tag:blogger.com,1999:blog-9066214101060043282024-03-13T10:59:32.546-07:00Starring ScarlettThe story of Scarlett's battle with congenital glioblastoma diagnosed when she was 2 months old. She is now a survivor!Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.comBlogger403125tag:blogger.com,1999:blog-906621410106004328.post-1684468062993864582023-10-16T21:50:00.002-07:002023-10-16T21:50:58.469-07:00Thirteen - Part 5 - Emergency Again<p> <span style="font-family: Arial, sans-serif; font-size: 11pt; white-space-collapse: preserve;">A few weeks into the new medication, she complained of stomach pain a few times. We dismissed it. A few days later, she had a painful episode at school and they called us to pick her up; her school aide mentioned it seemed like constipation. We attempted to treat for that with fluids and juice. Another episode of pain here and there, both at home and school, and we tried other remedies. One day, it seemed so bad that we gave her a suppository to encourage movement. Every time, she seemed fine after a while.</span></p><span id="docs-internal-guid-c525e7a1-7fff-3b06-c1e8-ae760749dd3c"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">When the neurology appointment finally came, Chris pushed that we needed her off the medication if seizures were not likely to recur, since it was causing constipation. The doctor thought that was strange; constipation is not a common side effect of Keppra. They want her to stay on it, so they prescribed liquid instead to see if that helped ease her discomfort.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">A few days later, she started again. It was Monday evening, and we were trying to get everyone into bed. She sat on the couch and just screamed. We tried drinks of water, heating pad, rubbing her belly, snacks to distract her, but nothing calmed her down. She can’t really communicate specifics, but she can clearly say, “MY TUMMY HURTS!” and then she screams. After an hour, we were both exasperated and gave in; if we couldn’t help, we had to take her to the hospital.</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdvw3ZM7OKeAbCZm5HcWOMk8ocCgxnTLpjgmqk7CZ_Jze03Ze2bY5Aja5MemX7JlZ93YllnIQRFOy61N20W4OJKBUIAcXtc4iigKLtqpLFNVB1OYQ2wl3qnetCVzMpNcUYAM7ESiy9OGmXT9KmDBTcuFOgBE7T9siAWuY055SwWECzp0r3zvyrLW0ejKNM/s4080/IMG_20231003_172947_01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4080" data-original-width="3072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdvw3ZM7OKeAbCZm5HcWOMk8ocCgxnTLpjgmqk7CZ_Jze03Ze2bY5Aja5MemX7JlZ93YllnIQRFOy61N20W4OJKBUIAcXtc4iigKLtqpLFNVB1OYQ2wl3qnetCVzMpNcUYAM7ESiy9OGmXT9KmDBTcuFOgBE7T9siAWuY055SwWECzp0r3zvyrLW0ejKNM/s320/IMG_20231003_172947_01.jpg" width="241" /></a></div><p></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">We hated this idea; it was late, we have been so, so busy and didn’t need an all night constipation monitoring trip. She seemed in pain, and we figured she needed an ultrasound or x-ray to rule out anything more serious. I dressed her, Chris packed a bag and then took off with her into the night. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">They waited in the ER all night. She was given some pain medication and quieted down, but still was uncomfortable. I tried to sleep while the kids slept, worrying about what a mess I would be the next day at work. I woke at 5, and started to strategize with Chris, who had not slept at all. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif;"><span style="font-size: 14.6667px; white-space-collapse: preserve;"><br /></span></span><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJAs1BiczRvNS2F8oJniHcAgJ_7wT3a1mUaIHy9w23q3vOc2_hXPu8e3cKiburk9hbw1WBNmJgwSQuf301Lnc5G593TgUU3_1jTtThoE8T1Jpo_CWE4nxO87CnojBPyxM14wOKjnfLsx6aKZyyeVIuEERt1j79-6udgkROR6lN7dX93luJOqwhZlb3DNdZ/s4080/PXL_20231005_013619669.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4080" data-original-width="3072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJAs1BiczRvNS2F8oJniHcAgJ_7wT3a1mUaIHy9w23q3vOc2_hXPu8e3cKiburk9hbw1WBNmJgwSQuf301Lnc5G593TgUU3_1jTtThoE8T1Jpo_CWE4nxO87CnojBPyxM14wOKjnfLsx6aKZyyeVIuEERt1j79-6udgkROR6lN7dX93luJOqwhZlb3DNdZ/s320/PXL_20231005_013619669.jpg" width="241" /></a></div></span><p></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">They still hadn’t had an ultrasound, but they were waiting for one. If he couldn’t leave the hospital by 6, there was no way for him to get home in time for me to get to work in time. The kids needed to get to school, too. Another crazy night, another round of emergency sub plans; I would head in after lunch for a half-day.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I got Benny and Evie to school and picked up around the house while I waited for news. The ultrasound finally analyzed, they had an inkling of a problem - she had gallstones, and they could not rule out her appendix. Appendix I could understand, but gallstones?! Straight out of left field.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">The details began to come together. Gallstones, and gallbladder was badly infected, causing pain. She needed it removed. She was being admitted for surgery. Because of her shunt, she needed IV antibiotics to prevent the infection in her abdomen from spreading to the tubing that leads to her brain. Her current shunt has lasted a notable many years and any infection could lead to needing it replaced.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">We felt terrible. We had been dismissing her pain for days and weeks. We had been treating her for constipation, which was one issue, but was likely not the root cause of her pain. We had been impatient and irritated with her complaints, overwhelmed by her being sent home from school and frustrated with her inability to stay calm about what we thought was minor discomfort. She historically responds very dramatically to minor issues, so we just thought she was putting on a show for attention…poor girl. I still feel terrible. It’s one of the issues we deal with regularly, her being unable to clearly communicate what she thinks, feels, needs or wants. We try to interpret what is happening, take her words, drawings, actions and routines into account to figure it out, and sometimes we miss the mark. Usually it is something minor; this was serious.</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl5dnj_NsQfCg0_vSK0NCWK6ha4ArBy3jYs59f1gB-wT_SAbTbb1kAmMV5QUyH7xRnhQbhkx-oJ8F4LVHXH4BcGv364mVQuKoWkPQtAOrWdeX7US3cyKe2u1XqRKKk9iU76r8syQLVj5PH6FbX20UaLcZwKwH8IewJdAYZV2BOuu-vbfhyj_PfjFJ8LzHg/s4080/PXL_20231004_023612973.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3072" data-original-width="4080" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl5dnj_NsQfCg0_vSK0NCWK6ha4ArBy3jYs59f1gB-wT_SAbTbb1kAmMV5QUyH7xRnhQbhkx-oJ8F4LVHXH4BcGv364mVQuKoWkPQtAOrWdeX7US3cyKe2u1XqRKKk9iU76r8syQLVj5PH6FbX20UaLcZwKwH8IewJdAYZV2BOuu-vbfhyj_PfjFJ8LzHg/s320/PXL_20231004_023612973.jpg" width="320" /></a></div><p></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I met Chris at the hospital after working for a few hours. He hadn’t slept for over 40 hours and was exhausted. I got there just in time to move Scarlett from the ER to the surgical floor; she would have surgery sometime the following morning. I got reacquainted with the inpatient procedures and spaces - she hadn’t been admitted in many years. She got a “dinner” tray of clear fluids and I settled in for a night of semi-restful sleep on the same fold-out chairs that I had spent weeks in almost 13 years ago.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Surgery happened first thing the next morning. She was prepped and ready by 8:00. We woke early when the morning nurse was doing vitals. As soon as she saw me awake, the nurse introduced herself, gave me a quick rundown of the plan, and then told me she remembered us. She had been one of the nurses who cared for Scarlett in the days before she went into surgery, in January 2011, the last time we were on that floor. She remembered Scarlett, and me, very vividly, and was so happy to see how well she was doing (other than the gallbladder part!) </span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ1ycU1jkLuJ_lEga1QKJNs2JgI1EDf7_3wk1dUsnaG3IGeb-3HNOf9-kUShjUb4JFs_EZrgIyxOPJpxHqW04kelQ2EnHvgn3wZ4YAWYpWwOdXnMPoXZwQbrzcnJGrdVoPHJ_fA1eizch0iCUSUjdnQuVvjzIqiPsbXDb_CCCudf9tbge8uDZCsvN7BSC4/s4080/PXL_20231005_034338225.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3072" data-original-width="4080" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ1ycU1jkLuJ_lEga1QKJNs2JgI1EDf7_3wk1dUsnaG3IGeb-3HNOf9-kUShjUb4JFs_EZrgIyxOPJpxHqW04kelQ2EnHvgn3wZ4YAWYpWwOdXnMPoXZwQbrzcnJGrdVoPHJ_fA1eizch0iCUSUjdnQuVvjzIqiPsbXDb_CCCudf9tbge8uDZCsvN7BSC4/s320/PXL_20231005_034338225.jpg" width="320" /></a></div><p></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">We got down to the surgical waiting room, and the doctor came out to ask her which bandaids she wanted - she chose princesses. We gave her a pre-anesthesia sedative - she gets very anxious with any kind of procedure now, so medicating her before putting on a mask or starting a procedure that will scare her is calmer and safer. Once she was asleep, I walked to the cafeteria for some coffee.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Surgery took about 2 hours. I met her back in the recovery room. A nurse came in while we were waiting, and asked if this was Scarlett. She said, “She’s been here before, right?” I said yes, but it has been quite a while. She responded, “I remember. She had two EVDs (external ventricular drains - “brain drains”) in the window space of the PICU.” I was shocked - that was exactly right, almost 13 years ago. I confirmed that this was in fact her, and we joked that it must have been quite an experience for her to remember after all this time.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">She had 4 small incisions on her belly that seemed to cause her very little discomfort. The surgeon explained that there was a lot of adhesions throughout her abdomen from her shunt, so it had been rather challenging to reach her gallbladder, so despite the small holes, a lot had happened inside. He was not as reassuring about solving her pain; he hoped that this would help, but pain is hard to track and he couldn’t guarantee this would be the end.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I asked what in her history might have led to this; surely something so strange was caused by some medication, procedure or illness in her complex medical history….but no. They insisted that is was most likely unrelated, just a fluke. Gallbladder issues are becoming more common, especially among females. I am not fully convinced that this is the end of that, but I haven’t had a chance to dig further.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUxHNV2fsUV3Wn08ianuMN4RiHRuNsxU3Bn-IEA3jz3l2IPNf2wCPRIVxIs4z3hsHaMNj2_jDJlttMAKf8SD4XGd6SJHP5UwC3tEZOi0RydEH2YEak5A1e-5bnp2j2B0gR2iHwM4vAmdj9nTNQybq9WmZdqfh8suMqxpXjpCdwMnbaVXxGKNUNt7RfMjVN/s4080/PXL_20231005_221939836.PORTRAIT.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4080" data-original-width="3072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUxHNV2fsUV3Wn08ianuMN4RiHRuNsxU3Bn-IEA3jz3l2IPNf2wCPRIVxIs4z3hsHaMNj2_jDJlttMAKf8SD4XGd6SJHP5UwC3tEZOi0RydEH2YEak5A1e-5bnp2j2B0gR2iHwM4vAmdj9nTNQybq9WmZdqfh8suMqxpXjpCdwMnbaVXxGKNUNt7RfMjVN/s320/PXL_20231005_221939836.PORTRAIT.jpg" width="241" /></a></div>The rest of the hospital stay was uneventful. Two days of IV antibiotics and pain management, which Scarlett spent primarily in bed watching her tablet and coloring. She loved having her meals delivered on demand and getting to wear a hospital gown that matched the walls and curtains.<p></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">She came home on Friday. Within 5 minutes of getting in, she ran to the trampoline and started jumping. She was in no pain and we gave no pain medication after discharge, not even Motrin. She went back to school the following Monday and has been pain free so far. She might have some digestive issues related to her lack of gallbladder as time goes on, but should otherwise be okay.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><br /></div><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Who knows what comes next. If the year behind us has taught us anything, it is to expect the unexpected, be ready for anything, and lock the door.</span><p></p><div><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></div><br />Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com0tag:blogger.com,1999:blog-906621410106004328.post-29525468924796248232023-10-16T21:42:00.002-07:002023-10-16T21:42:42.958-07:00Thirteen - Part 4 - Seizure<p> <span style="font-family: Arial, sans-serif; font-size: 11pt; white-space-collapse: preserve;">The day before school starts is a crazy day for teachers. We are trying to get everything ready to welcome new students, adjusting out of our summer lives and back to work life.</span></p><span id="docs-internal-guid-b2df3c66-7fff-3192-d07d-42e62e2a81c5"><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I was just finishing up some paperwork or laminating. My phone dinged and I casually looked over at it. Our doorbell camera sensed a passing vehicle - a firetruck. I thought, “Oh, our poor neighbors! I wonder who is having a problem.” And then, I noticed the very end of the clip - a firefighter jumping off the back of the truck in front of the house.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I clicked the notification and opened the app. The camera showed a firefighter running up the walkway to the front door. I swiped it away and called Chris.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I don’t know how he is always so calm. My reaction to stress is so very opposite, I can’t always process his reactions. My brain is screaming, my heart is racing, my voice is loud, and I am trying to slow down enough to make even one concrete decision. I often cry, or freeze up. His brain takes in the information and sorts it out, makes quick decisions, remembers details and files through every past situation for what we need.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">So, I sputter out, “What is happening?!” and he responds in an even tone, “You should come now. Scarlett is having a seizure. The ambulance is here and we are going to the hospital.You can meet us there.”</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I grab my bag and run. I lock my classroom door and debate if I should yell down the hall that I have to leave; I decide not to, since I don’t want to throw everyone’s day into chaos. I run over to the next room and just blurt out something like, “I have to go, my daughter is having a seizure.” I run through the office and say it again. I nearly run into the principal, who thankfully knows me well enough to know that when I am running out, something is serious. I tell her I have to go to the hospital. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I jump in the car and try to get out of the lot without screeching my tires. I made a call and had a substitute teacher arranged before I even got to the freeway. I hurry to get across several lanes of traffic to the express lane and go as fast as I can.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">It’s about 15 miles from work to home, and another 5 miles or so further to the hospital on some of the most traffic-plagued stretches of road in the country, but that day, I lucked out and hit very few snags. I pulled off the highway toward the hospital and the ambulance was directly in front of me. I watch them pull into the emergency room bay, and continue to the parking lot.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I got into the ER as they were assessing her. We are giving her history, automatically regurgitating birthdate, medications, dosages, last doses, last medical visits.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">“What seizure medication does she take?”</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">“None. She hasn’t had a seizure in 9 years.”</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">She had seizures with the initial tumor at 2 months old, and then at 3 years old, had a mysterious bout with absence seizures, estimated to have been hundreds a day when we finally figured it out. Since those resolved, she has not had any seizures or noticeable neurological disturbances.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">This time, she was napping on the couch. Nothing out of the ordinary had been happening, just a normal day. Her caregiver noticed her moving strangely, and quickly recognized it as a seizure. Thankfully she was trained for seizures with a previous client and knew what to do and not to do. Chris arrived home 2 minutes later, and they called 911.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Scarlett’s full body seized violently. When the paramedics arrived, they noticed she was beginning to overheat; they asked Chris to get all the frozen food from our freezer and began to pack them around her body to bring her body temperature down. They administered a nasal medication to stop the seizure. After a few minutes of no change, they gave it again. The seizing finally stopped more than 20 minutes after it began. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">By the time she got to the hospital, she was resting peacefully. Her body temperature had normalized and all her vital signs were normal. Chris took the car and went back home to relieve Briana, who had stayed with Benny and Evie; I settled in for whatever was coming.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Our first instinct is to consider tumors and shunt issues. She got a quick-scan MRI to check for shunt malfunction. She had an x-ray series to rule out any other shunt-related issues. They drew labs - nothing of note. No one says explicitly “No tumor” but I try to tell myself that no news is good news in that department. I asked several times what might bring this on if it isn’t that; no one has a clear answer for me. Someone mentions that it can just happen sometimes in puberty. We’re definitely in that zone, so maybe it’s a factor, but I haven’t ever heard of seizures being a typical issue in puberty…is she “lucky” or is there some correlation to something else? No one knows. I ask when we will see a neurologist; they are noncommittal.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">They decide they have to rule out a urinary tract infection; again, since when is a 20+ minute seizure a side effect of UTI? But we have to rule it out, and that means we need a urine sample. So, I try to get her to drink. We get some dinner before the cafeteria closes. I get juice and a popsicle from the nurse, and then ice water. I give sips and more sips. She notoriously avoids using the bathroom when she doesn’t want to. After a while and a few drinks, I try to get her to the bathroom. We hobble our way through the ER to the restroom and we try to collect a sample…but nothing. I ask about the neurologist. They say that meds have been ordered - Scarlett will start Keppra. I pause, because no one has talked to us about this at all. She was on this before, and it didn’t work; different year, different seizures, but same kid. I asked if we needed to be concerned with interactions with any of her other medications. The nurse, who I had really liked and had been chatting with a lot, lost me when he casually said, “Oh, probably not. Everyone gets Keppra.” No, everyone doesn’t, and not with a history like Scarlett.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">More fluids, another try, nothing. It’s getting later and I am getting anxious about school. I had arrangements if needed, but I hated to miss the first day of school. I teach first grade; the first day is a big deal. We decide to hook her up to an IV to push fluids and hurry this along.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">We get moved from the big critical care room to a small room. It’s further away from the nurses, so we stop seeing them very often. The next in a series of doctors comes through, and I ask again when I will see a neurologist, I have questions about this medication and feel like this urinary tract infection is a dead end. The doctor tell me that no one from neurology is going to see her, that we will follow up later, and we have to do all the tests before they will consider anything else. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">That was the end of my patience. I was frustrated, tired, cold, and worried. My concerns had been repeatedly minimized. I was anxious about work. I lost my cool with the doctor, snapped at her and then cried about how frustrated I was. “Do you see any other signs of a UTI? Is there any other symptom indicating that might be an issue?” She apologized that I had misunderstood what we were waiting for - anyone who knew anything about a brain tumor - and said we had to rule it out, then left me to wait for pee.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">The fluids ran for an hour or so, and Scarlett slept. I write some skeleton of sub plans to relieve myself of the work stress - if I can take that off my plate, just let it go, I can put my focus back where I am now. Work will be fine, the kids will be fine and my coworkers know how to support my students (and know I would never have done it if I didn’t have to!) Letting go of that was a relief.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">When the doctor came back, I apologized for my poor response before, and explained why I had felt so pressured to get out as soon as I could. At least now I could just wait.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I gave the fluids about 30 mins, and then made Scarlett wake up to use the bathroom. Finally! Success. We delivered the sample and then waited for results. No surprise, she didn’t have a UTI. Finally, around 11 pm, we were discharged with two new prescriptions - one for daily seizure prevention and one for emergency “rescue” doses to have in case she had another - but no answers about why it happened.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">And now, more than 2 months later, we still have no answers. It took over a month to get a new referral for a neurologist and schedule an appointment. She hadn’t needed one in so long that she had been dropped from their rolls. When we finally got the referral, they wanted an EEG; we tried, but Scarlett took one look at the leads to be glued to her head and she threw a tantrum that would not allow it. She is on daily medication until further notice; we have yet to remember the rescue dose when we go anywhere. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">There have been no other seizures. Just a dramatic emergency blip in her timeline, I suppose.</span></p><div><span style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></div></span><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHO1_lDxBscBZhRAJEPchYqIS8hefv4t3eHZW-2EJguKdCXnxZCKMZW4ojiqUZw52MKasAcDGyD73dT0b5iIyv6kBQjOXGuYpMNZsnnA2PxnZ-QePc1RHbXKg5sQq7sWA45rAXG5lrvaOIGRa9MCv-orGOEJ99uQiqpp4DSlHD0UZz9X8ti_8pnQaLri57/s3913/PXL_20230809_021427829.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3913" data-original-width="2919" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHO1_lDxBscBZhRAJEPchYqIS8hefv4t3eHZW-2EJguKdCXnxZCKMZW4ojiqUZw52MKasAcDGyD73dT0b5iIyv6kBQjOXGuYpMNZsnnA2PxnZ-QePc1RHbXKg5sQq7sWA45rAXG5lrvaOIGRa9MCv-orGOEJ99uQiqpp4DSlHD0UZz9X8ti_8pnQaLri57/s320/PXL_20230809_021427829.jpg" width="239" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><br /></td></tr></tbody></table><br />Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com0tag:blogger.com,1999:blog-906621410106004328.post-6479069413422864472023-10-16T21:30:00.002-07:002023-10-16T21:30:29.597-07:00Thirteen - Part 3 - Another EscapeA few weeks passed after returning from the mountains. We told our story to family and a few friends that we saw… “Your spring break looked so fun! I can’t believe how much snow there was!” “Oh, it was great, except for this one part…” My friends at work are just used to my insane stories by this point…just another day for us.<br /><br />Cosmo had been deteriorating; at 14 years old, he was moving less, eating less and seeming less like himself. He hadn’t slept through the night without needing to go out for months. I was used to his low growl and shifting around that signified I had better get up. I picked him up - he couldn’t reliably walk on the hardwood floors, and turned for the hall.<br /><br />The light was on.<br /><br />Scarlett’s light was on. That was never a good sign. Maybe she was coloring on the wall again, or had dumped all the houseplants again. Maybe she was on the trampoline again. I started looking. Not in her room. Not on the couch. Not in the bathroom, or the kitchen. Not on the trampoline. <br /><br />Here we go again.<br /><br />I yell for Chris. He comes running. We look on the side of the house and see it…the gate is open. DAMN IT. The gates have combination locks on them to prevent her from opening them. She has never gotten them open. Someone left it open. We run out and look in the front yard - nothing. Down the sidewalk - no sign of her.<br /><br />Here we go again.<br /><br />Chris grabs his keys and I grab the phone. I open the camera app and look for her last movements. She walked into the backyard around 11. She looked at the trampoline, looked around once, and ran to the side gate - how did she know it was unlocked this one time? She lifted the latch and went straight through, laughing. She walked out the sidewalk, and ran to the left down the street, and disappeared from view. It had already been over an hour, and we were only just starting to try to catch up to her.<br /><br />I call 911 and start the same song and dance…me trying not to panic, trying to calmly describe what has happened and what she looks like. I don’t remember how tall she is or her most current weight. I realize then that she is wearing the exact same pajamas as the last time. They take the report, and since we are home, an officer is at the house within a few minutes. I text him the exact same photo I had used the last time - same pajamas, same hair. I quickly inventory her room; as far as I can tell, she didn’t take any shoes.<br /><br />He checks the house, looks through her room and the closets. He flashes his light under the trampoline and around the shed. He tells me they have officers out looking.<br /><br />At some point, another officer arrives. They talk to each other under their breath in the front yard, and he asks me the same questions again…and then asks if I have dental records. <br /><br />Again, my TV and movie experience has taught me why police use dental records - to identify dead bodies. I catch my breath. My brain is screaming, “ARE WE IDENTIFYING A DEAD BODY?” Somehow I say they exist, but we don’t have them at home. <br /><br />Do other people have those kinds of dental records at home? I have a lot of strange imaging - MRIs, 3d CT scans - but no dental records.<br /><br />The officers eventually have everything they need from me and say they are going out looking. I see police cars pass our street every few minutes, search lights going down our small street. They come by, stop in front of the house, and then keep going. It was painfully quiet in the house. I had nowhere I could go - the younger kids were peacefully sleeping, and I was assigned to stay home “in case she came back” (which she has no way of doing). It felt wrong to scroll on my phone. I realized that no matter what happened, I would not be any shape to be functional at work in the morning, so I put in for a substitute for my class and tried to focus on writing somewhat coherent sub plans.<br /><br />As we rehashed the night later, Chris told me what it was like for him this time around. He drove around our neighborhood looking for clues. He flashed his phone flashlight into parked cars. He searched the playground that we frequently visit, where he ran into suspicious police officers and had to explain who he was and why he was there. He drove around to the big furniture store around the corner and dug through the dumpsters of cardboard. He watched for anything suspicious, any clue that there was a reason to look closer. He saw nothing. Again, we texted back and forth, called every once in a while to hear each other’s voice and try to think of anything else we could do. At one point, I thought she might have taken her tablet - it looked like she was holding it in the video footage. If she had it, we could use the device tracker to find it. We began frantically trying to figure out which account and log in would allow us to track the device…only to hear the tablet alarm from her blankets.<br /><br />Minutes and then hours passed. Sometime after 2am - she had been gone 3 hours already - I saw another police officer outside. I walked out to see if there was any update. It was the first female officer I had seen, and she was more gentle with me. She told me that, luckily, it was pretty quiet in the rest of the area, so they had the entire city department out looking, and had made a report again to the National Missing Children’s registry. Some kind of accomplishment to be on it twice in a month. <br /><br />The officer then brought my attention to the sound that I had not noticed. A helicopter was approaching overhead. She said, “They're here for us.” A police car at the end of our street was signaling with lights to the helicopter team from the California Highway Patrol, and they were searching the neighborhood from above.<br /><br />She then told me she would be looking in the yards up and down our street, just to be sure. I thanked her, and went back inside to sit and wait.<br /><br />Not long after, I heard steps and radio voices on the porch. I opened the door before she could even knock. She was talking but her face told me they had found her. In her radio talk, I heard them talk about stopping the trains; she had been spotted on the Union Pacific tracks more than a mile from our house.<br /><br />Here’s what I pieced together: Scarlett ran for several blocks with no shoes or jacket. At some point as she wound her way through the neighborhood, she reached the railroad tracks, and started to follow them.<br /><br />One of the things the police had done in their search was to alert the unhoused people living in the vicinity. They showed her picture to some of their more reliable “sources” from the homeless encampments nearby. One of the people they contacted saw her. Several of the people she encountered along the tracks had tried to stop her, but she kept running. One man finally got her to stop, knew who she was from the description and contacted the police. She was cold, and he gave her his sweatshirt while they waited for the police to come. She was not hurt.. It had been almost 4 hours since she ran out the yard into the dark.<br /><br />Has any child ever been so unlucky and lucky at the same time?<br /><br />When the officer at the house described this to me, I was completely floored and in shock. I sat in the doorway shaking. I laughed. I swore. I called Chris to come back. The police had an emergency hold put on the trains; it is a busy section headed to the Oakland shipping piers, and trains pass regularly. Scarlett was retrieved by the police and brought home in the front seat of a police car. When the car pulled up, I looked through the windshield and saw her. She just smiled. When I opened the door, she said, “I’m so sorry” in her playful way. I carried her in to the couch to inspect her and see what needed to be done next.<br /><br />She smelled like a combination of putrid sweat, urine and smoke thanks to the sweatshirt that had been given to her. She was totally unhurt - sore feet (NO SHOES!!), cold, but not a single cut or scrape. We went through the motions of calming her, warming her up, checking her over and trying to get her to tell us if she was hurt. The only things she said were, “I’m so cold,” and “I’m so sorry.” The police were visibly relieved and left us quickly once they saw that she was all in one piece. We promised, yet again, that we would add more safety measures to the house, and profusely thanked them for their help. I mentioned to the one officer how much I had appreciated her calm and understanding, since other officers had asked for dental records and in previous episodes, made comments about our poor parenting. She apologized for them unnecessarily, and reassured me that she saw what was happening and knew we had done what we could.<br /><br />We gave Scarlett a warm bath and packed her into bed. Chris fell asleep, but I was up for the day. When morning came, we let Scarlett sleep but got the other kids off to school. I started searching and calling security alarm companies to see if anything could help. The technicians I talked to said they didn’t really have anything that would improve on the cheap magnetic alarms we already had; they could better protect from people getting in, but weren’t sure how to better secure us from having anyone leave.<br /><br />We have upgraded our protective layers many, many times. When she first started opening doors to go out - even before she could walk, she would stand to open, then crawl out - doorknob baby guards stopped her. When she could stand and figured out the doorknob locks, we added chain locks to the top of the doors. When she figured out how to drag a chair over (or got help from a very sweet but misguided little brother), we added a spring-loaded security lock (the best so far, still unbreached) and a small, loud “bing bong” alarm to the front door. After this, we added a wireless doorbell to the back door and put the alarm box in our bedroom.<br /><br />When she tried to climb the fence and pulled a large section of it down, we replaced the fence with taller panels. When she kicked out the old boards on the original gates, we replaced them with all new gates, and added the combination locks that she could not open. We added motion-sense cameras to the front door, driveway, backyard, and both sides of our 1200 sq. ft. house, as well as inside the kitchen. We give her high dose, extended release melatonin, by prescription, to help her settle into sleep more reliably; she often just entertains herself well into the early morning if we don’t catch her.<br /><br />We have a <a href="https://www.jiobit.com/" target="_blank">Jiobit </a>GPS tracker that we have her wear when we go out. We have notified every neighbor, school support, and every relative, though they have all been through it with us (or when they have tried to keep her on their own). When we are out, we are vigilant; anyone with us knows we have an eye on her at all times, check in with each other before one of us leaves the area, and will jump up and run if we think she has wandered.<br /><br />And she still gets out. We live with the daily cacophony of noise if any door is opened, constant phone alerts for motion on our cameras, and a device we try to keep charged and on her, and she still gets out. Inevitably, something goes unchecked, batteries die or we just miss something once in a while. Nine times out of ten, she won’t do anything. We let our guard down unintentionally, and then it happens.<br /><br />A few weeks ago, we found her at midnight, stuck on top of the fence. She had gone out - the batteries on the door alarm were out and we hadn’t noticed - and she found the ladder had been left out from tree trimming a few days prior. She carried the ladder, set it up and tried to climb over the fence, but got stuck. She was there for several minutes before her screams woke us (and somehow not our neighbors, whose bedroom window is equidistant.) We got her down, brought her in, and just wordlessly put her to bed. <br /><br />When we have traveled since these events, we take the plug-in doorbell alarms with us. We use painter’s tape to attach them temporarily, and set up an alarm on every door. This worked well for hotels and rental houses across our road trip, in hotels for short stays and in the cabin at family camp. We often set up "boobytraps" of chairs or tables after she is in bed - at least to slow her down, maybe to deter her. When we went camping, both Chris and I had trouble sleeping, worried she would try to get out of our tent. We ended up using a twist tie from something to tie the zippers together so, if she did try to get out, at least she would likely be noisy and wake us up. She never once tried to get out on any of our recent trips, at least that we know of.<br /><br />She remembers now. If we mention her running away, she knows it was bad. I think she remembers feeling unsafe, even if she is not sure why. She feels embarrassed and insists she won’t do it. But I don’t think that, when the opportunity presents itself, the past memory will stop her.<br /><br />It is mentally and emotionally exhausting to be on high alert every night. Any sound in the night makes my heart race. We frequently get out of bed before falling asleep to do one last check. The first thing I do every time I get up is check her door. For now, we have enough safety nets that I can sleep. At some point in the future, I expect she will do it again, and we will be thrust back into the panic again. And, hopefully, we will find her.<br />Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com0tag:blogger.com,1999:blog-906621410106004328.post-66015127159540819242023-10-16T21:23:00.004-07:002023-10-16T21:23:58.704-07:00Thirteen - Part 2 - Trips and Escapes<p><span face="Arial, sans-serif" style="white-space-collapse: preserve;">This was two posts, but I just put them together for a long read.</span></p><p><span face="Arial, sans-serif" style="white-space-collapse: preserve;">--</span></p><p><span face="Arial, sans-serif"><span style="white-space-collapse: preserve;">We have been traveling more. Last summer, we planned a road trip for the first time. We had a lot of stops, and a few big </span><span style="white-space-collapse: preserve;">way points</span><span style="white-space-collapse: preserve;"> that kept us going. In 10 days, we went to Monterey, then LegoLand, through Joshua Tree National Park, to Arizona to see cousins, then back through Morro Bay. It went much better than we expected! Everyone had fun, even with challenges. Two weeks later, we flew to Texas for our first visit with the big cousins. It was a great summer!</span></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1EetaGde-Tb2q5-HoAokZ0YwATwl6uQFNz92qVa4BPT6Z8v-eb8pnYkRTtICB1dCC1u3VVj9hUohLLFBmL87iPJuyNmfZxXHQ194ljkTNMp8pI64Ey7TZrHg_V-jE5QdWYMcD4wVqIqKxYpwLHUjLXbj0xVnFv0sk63DuulK9koVT3FxITle3MLbynYYn/s4032/PXL_20220705_172955429.MP.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1EetaGde-Tb2q5-HoAokZ0YwATwl6uQFNz92qVa4BPT6Z8v-eb8pnYkRTtICB1dCC1u3VVj9hUohLLFBmL87iPJuyNmfZxXHQ194ljkTNMp8pI64Ey7TZrHg_V-jE5QdWYMcD4wVqIqKxYpwLHUjLXbj0xVnFv0sk63DuulK9koVT3FxITle3MLbynYYn/s320/PXL_20220705_172955429.MP.jpg" width="240" /></a></div><br /><span id="docs-internal-guid-786198e8-7fff-457c-c957-0c982189fc9d"><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">In January, we went to Disneyland. We almost didn’t make it. Scarlett got sick with her first ear infection - both ears and high fever. Antibiotics were hard to come by in the days between Christmas and New Years and we barely got them in time to get her back on track. Then Chris and I started to feel sick. We each had a bad day or two, and started to look at canceling. New Year's Eve came and we were on the road to recovery, no fevers and just a little stuffy, so the trip was on. The weather was terrible at home and we knew the trip would be a wet one, but we had ponchos and extra shoes. Then, our roof sprung a leak; thankfully it was patch-able. We were packed and had several hard-to-get reservations. We got on the plane and were ready for fun! We were worried about Scarlett’s ears on the plane, so Chris was watching her carefully during takeoff, when suddenly his own eardrum burst! He was in a lot of pain and could not really hear from one side. He was a little off his game, but we made it work. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTlHPVqQnYOJZSu_HTLnBlfr1bjpu2oKqvk-Y1vEy24OyHVAPtdn2Blpl8NVPH22-vWGbr-95FrQr3qLUtwDxM1C6SzkLBnu9mwQNjO5EegzrYsQh0HfhDgeDwc7uTiqDG5IG34DteJ0jSywdoJubsVCr2mETdXXjxuRm-ooekIoUni74DzQU6RhzknpPW/s3473/PXL_20230103_174941856~2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3473" data-original-width="2507" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTlHPVqQnYOJZSu_HTLnBlfr1bjpu2oKqvk-Y1vEy24OyHVAPtdn2Blpl8NVPH22-vWGbr-95FrQr3qLUtwDxM1C6SzkLBnu9mwQNjO5EegzrYsQh0HfhDgeDwc7uTiqDG5IG34DteJ0jSywdoJubsVCr2mETdXXjxuRm-ooekIoUni74DzQU6RhzknpPW/s320/PXL_20230103_174941856~2.jpg" width="231" /></a></div><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p>We had a fabulous time, despite the heavy rain. It was Evie’s 4th birthday. We made sure each of the kids got to do their one big favorite - Evie met Mirabel from Encanto; Benny rode all the “mountains”, since he was tall enough now; and Scarlett met Judy Hopps. Finding characters between the rainstorms was tricky, but we did it! Chris was okay, and went to the doctor when he got home. No damage, though his hearing took several weeks to fully recover.</span><p></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif"><span style="white-space-collapse: preserve;"><br /></span></span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1J6xtL0FIF_rHKxwOy2YCUvVIJX-5inoKyrZuvj4kKnfdm-inWqXTQtXqgX-5L72shdgOK0V-YiBPrvCSdVNB0V5aIXllrkfOqIXc_wB2yoTj37zH5avDcs31HSpTd2_2IDJRaEMh_Jx3dIzSSY2iCs1iiLi02jkgCMVuz48dWm1bmGQhRWoszSV6yqYl/s4032/PXL_20230104_223741090.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2268" data-original-width="4032" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1J6xtL0FIF_rHKxwOy2YCUvVIJX-5inoKyrZuvj4kKnfdm-inWqXTQtXqgX-5L72shdgOK0V-YiBPrvCSdVNB0V5aIXllrkfOqIXc_wB2yoTj37zH5avDcs31HSpTd2_2IDJRaEMh_Jx3dIzSSY2iCs1iiLi02jkgCMVuz48dWm1bmGQhRWoszSV6yqYl/s320/PXL_20230104_223741090.jpg" width="320" /></a></div></span><p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">We felt brave, so we decided to go bigger this summer. We try to plan around big stops, like national parks, theme parks, visiting family or touristy spots that we think the kids will enjoy, with no more than 5-6 hours of driving each day, and at least one “play” day between long drives. We got Scarlett the <a href="https://www.nps.gov/subjects/accessibility/interagency-access-pass.htm" target="_blank">Access disability lifetime pass</a> for National Parks, so we decided to add a few of them to our itinerary. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">This year’s trip started with two days to get to Las Vegas. We did a full day bus tour from there to the West Rim of the Grand Canyon, then spent 4th of July there. It was about 115 degrees most of the time we were there. The next day, we drove to Zion National Park. We rode the bus and did a short hike, but the heat, late start and crowds didn’t give us much time to explore. We drove from there to Bryce Canyon the next day. The kids were burned out that day and mostly stayed in the van, but Chris and I really enjoyed every stop.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1hQxsmOQNr7unaN3YrtEics6RwO_mjS2yRKOuZ-z_TADANo0zXZ_szZH4g4BnH-AoS-0Q6znYgzBZ30ha4JoxbT0v_N3RN-oDFTnmJsXvlE5AgDDGmq0cV2WhY6OkQ3uF_rloMVbQASwG7eH-8DbZrJwq1jV4hqwZ5H-vX0AlLyRg0WoiNp4wR1qGOudY/s4080/PXL_20230705_035712640.MP.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4080" data-original-width="3072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1hQxsmOQNr7unaN3YrtEics6RwO_mjS2yRKOuZ-z_TADANo0zXZ_szZH4g4BnH-AoS-0Q6znYgzBZ30ha4JoxbT0v_N3RN-oDFTnmJsXvlE5AgDDGmq0cV2WhY6OkQ3uF_rloMVbQASwG7eH-8DbZrJwq1jV4hqwZ5H-vX0AlLyRg0WoiNp4wR1qGOudY/s320/PXL_20230705_035712640.MP.jpg" width="241" /></a></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p>Scarlett uses a stroller-style wheelchair for big outings. She has really low endurance, especially in the heat, and can be unstable walking on uneven surfaces or in crowds. She loves to watch and explore from the chair, and pushing her through most of the walking paces saves her energy for doing more in a day, so it goes on adventures with us. We tried to research the most accessible way to enjoy the parks, but some of what we were told did not pan out…like the paved train in Zion that ended after a short distance and had a sandy walk to the river, and then a hard-packed dirt section. Pushing a 100-pound child in a 50+ pound chair in 100 degree heat was not ideal. And let me tell you, there was not a single Uber driver in Vegas that was happy to see us at pick up, but too bad. The staff at the glass overlook bridge at the Grand Canyon let us skip the long line with the wheelchair and cleared the bridge for us to have it to ourselves for a few minutes, but the site was otherwise really not wheelchair-friendly.<p></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvUxPTVlWi7JTlSv8v2XWfQ1c1m6U1Jo7KxvLHc2WF52RKnWegA6PRGpUha160yGzAZGsyc0oUQxebKfsexLXzGm-X89CMd443GvB5MwMjX9r9EfHRMtOMKuIrkz7makBRF8QT5PG4bmziaPQtQ3rwg6DuAqVzIE4iXVksw_0LP3Z486gpd7cOrnzYaFjN/s4080/PXL_20230705_185716616.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3072" data-original-width="4080" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvUxPTVlWi7JTlSv8v2XWfQ1c1m6U1Jo7KxvLHc2WF52RKnWegA6PRGpUha160yGzAZGsyc0oUQxebKfsexLXzGm-X89CMd443GvB5MwMjX9r9EfHRMtOMKuIrkz7makBRF8QT5PG4bmziaPQtQ3rwg6DuAqVzIE4iXVksw_0LP3Z486gpd7cOrnzYaFjN/s320/PXL_20230705_185716616.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4P5p3tkHO13UWal35rpFpyRdevNl7KqRfpDB8-ave1o86NEuLBzsWmaLAuNQ5C0u4KA9Ch_pdnLZQ4jSs8H3wTIouexy4yYMHHeRI-q3xm_KVa4GoCRkNtvb_d2_4KXKwX0rRKceULBAitTf2N7DLPU56GQfRxGy_N-5tu7dPwhX0kubzwgBVGh6zAG4V/s4080/PXL_20230705_200140841.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4080" data-original-width="3072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4P5p3tkHO13UWal35rpFpyRdevNl7KqRfpDB8-ave1o86NEuLBzsWmaLAuNQ5C0u4KA9Ch_pdnLZQ4jSs8H3wTIouexy4yYMHHeRI-q3xm_KVa4GoCRkNtvb_d2_4KXKwX0rRKceULBAitTf2N7DLPU56GQfRxGy_N-5tu7dPwhX0kubzwgBVGh6zAG4V/s320/PXL_20230705_200140841.jpg" width="241" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Pushing one and carrying the other through Zion<br /><br /></td></tr></tbody></table>We left Bryce Canyon and headed to Sedona, stopping at Horseshoe Bend. We tried to do Slide Rock Park, but it was just too much for us to manage for more than a few minutes. We got to our rented house in Arizona and played with cousins for a few days, and made a wise trip to Great Wolf Lodge for the day - the house had a pool, but it was too hot to use it, so we enjoyed having some freedom at the indoor water park. Benny especially enjoyed the big slides, and Scarlett floated around the lazy river over and over and over.</span><p></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">As we packed to leave AZ, we had another unwelcome surprise - Chris got stung by a scorpion. We tried not to panic, but it was scary. He called our doctor back in CA and they said they didn’t know, go to the ER…while the local AZ people said ice and pain medication, so that’s what he did. His whole arm burned for a day or two, and feeling fully returned after about 4 days. Quite the parting gift from the desert; we weren’t sad to say goodbye!</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Then, we surprised the kids with going back to Disneyland. We knew we would be passing by, and needed a waypoint before we were ready for our last stop. Our last trip had been rainy…so we went for it. I had secretly packed all our Mickey paraphernalia into a bag that was stuffed under the seat of the van. They didn’t know where we were headed until we walked in. It was our first time trying it with no extra adult - just the 5 of us and the Disability Access Service that lets us move through the park a little easier. It was hot but we had a ton of fun. We really can't beat a Disney vacation for Scarlett - everything is done so well for her, and it's fun for us all.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Our final stop was at a friend’s in Southern California, and then headed back home. We were on the road for 16 days total. It was a great adventure, and despite the heat, crowds, scorpions and other stuff, the kids had so much fun. We are already thinking ahead about next summer’s adventure.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">–</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">We planned a trip to play in the snow during Spring Break. We found a cabin in a quiet mountain neighborhood and planned to stay a few days to sled, tube and sight-see for a few days before the snow melted. My parents were going to come, but my mom was getting her first dose of chemo the day before, and she was worried that she would be too sick to enjoy herself. She was going to come for just a day, but decided it was best to stay home. The kids were already building snowmen in their heads, so we went. We unearthed our old snow gear, borrowed to fill in for the kids and drove out to the mountains. We got settled into the house, played in the small drifts still piled around the house and settled in for the night. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6v7NyL-AsDv1GJsA4_iPfLhnmh6LaQLN_mhxDgDfW1yS7nWgyqJ9TaYM0rfIhUd1nKxc8Y0gs4hZvLZvr86PUd8C4_ZH82s3hJMeoR_t1erpkpmJZac9FEG_bbyRSvKYIOYmpjdgRATn6XqcGLwD4g3X0_cZiqXwN8lPdGLSDnpbLVa2Rls7dOpBl4yp6/s4080/PXL_20230408_193127049.PORTRAIT.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4080" data-original-width="3072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6v7NyL-AsDv1GJsA4_iPfLhnmh6LaQLN_mhxDgDfW1yS7nWgyqJ9TaYM0rfIhUd1nKxc8Y0gs4hZvLZvr86PUd8C4_ZH82s3hJMeoR_t1erpkpmJZac9FEG_bbyRSvKYIOYmpjdgRATn6XqcGLwD4g3X0_cZiqXwN8lPdGLSDnpbLVa2Rls7dOpBl4yp6/s320/PXL_20230408_193127049.PORTRAIT.jpg" width="241" /></a></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p>The bedrooms were downstairs from the main part of the house. The house was dog-friendly, so we had our old blind and deaf puppy Cosmo along for the ride. We used the provided baby gate to block him from falling down the stairs. The property owners had warned us to be cautious as several bears had been sighted, hungrily coming out of hibernation. We kept him close by on a leash; he didn’t want to wander - he had no patience for the cold ground. As usual, the little kids shared a room, and Scarlett had her own. There was a door in her room, and we laughed that at least it was barricaded by a snow drift…and still dragged a dresser in front of it. We locked up, tucked everyone in and went to bed around 10.<p></p><br /><div style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Around midnight, I woke up suddenly. My mom brain knew something wasn’t right. I jumped up and immediately noticed that there was a light in the hall. Scarlett’s door was open. I ran up and was horrified to see the baby gate was open. The front door was wide open. She was gone. </span></div><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I don’t remember exactly how the next steps went, but they involved me screaming for Chris, him running up and down the street looking for her. We had only been there a few hours, so we didn’t know much about where we were. We checked her room, every room, and around the house. Her shoes were gone, but her coat was still there. Her favorite toys were still tucked in the blankets. The other kids were sound asleep in the other room. But she was gone.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">There were no other cars. A few dim lights on the surrounding cabins. No other people we had seen; the snow season was nearly over, so this neighborhood of cabins was mostly deserted, waiting for the browning snow to melt and make way for the summer lake people. No footprints, no sounds.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">She has done this before, but never like this. At home we have locks, alarms, cameras; she finds a way through. We have made the fences taller, added more locks and told every neighbor in the vicinity that they they should take her hand and bring her home if they see her alone. She is on file with the police as “At Risk” with their Autism outreach program, even though she doesn’t have Autism. But this time, we were away from home, it was cold, it was the middle of the night and there were maybe bears.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Everytime she has run off, we have taken the same roles; it’s faster and more efficient if we do the same thing, and honestly, we do what we both are capable of in the moment. Chris grabbed his boots and car keys and started driving; I called 911. I tried to stay calm as I gave a report - my disabled daughter had left the house. She is wearing pink and purple tie dye pajamas, pink shoes and no jacket that I know of. She’s 12, blond hair, blue eyes. </span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">They never understand immediately. They tell me to look in the house; I do. I am running up the stairs, down the stairs, from room to room, opening every closet, from one side of the street to the other. There was nothing to see. The 911 operator is having a hard time hearing me; reception is poor in the mountains. They keep asking if she met up with someone, if she ran away. They don’t understand that she has no way to contact anyone, no friends to call, no interest in going away with someone else. She’s 12 on the outside, but maybe 4 on the inside. She doesn’t understand what could happen. She takes the opportunity and just goes.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">The police officer is having such a hard time hearing me that we resort to texting. I can hear them, but they can’t hear me, so I text my responses. I text them a picture of her that I had taken earlier in the evening. I text some of the big medical things - had a brain tumor, has a shunt, scars on her head and belly, runs unevenly. They keep asking if she has any friends who would drive to pick her up, or if she went to a neighbor’s house, or if she is hiding. I respond no every time.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Then they tell me it might be another 45 mins until someone can get to us. I became hysterical. Please, please, I am begging you, please send someone to help us. They say they will try, just wait on the phone.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Luckily, it didn’t take that long; maybe 20 minutes. An officer pulls up in front of the cabin. He is scoping me out; I have seen enough TV and movies to know what they are thinking. I describe what I know, he searches the house again, including under the beds where the little ones are sleeping. He sees her bed full of stuffed animals and crayons, her jacket on the hook. He says more are coming, but they have several calls simultaneously, so it might be awhile. I found out after it was all over that they had gotten two other missing child calls at almost the same time as mine, and both others were more suspicious, which led them to scrutinize my call.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">The police officer walked around the cabin and surrounding houses. A fire truck came eventually. They checked in with the officer, and then headed off to search. It had been about an hour since I woke up; we don’t know how long since she had been gone. They told me that she was being submitted to the National Missing Children’s registry, and that shortly, they would activate the county’s volunteer search and rescue. He tried to reassure me that they had the biggest, most robust team in the state…somehow, it didn’t help.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Chris drove by intermittently as he circled through the dark streets. He told me later that he had scraped up his arms and legs jumping down ravines and climbing back up any time he thought he saw something. He was driving around with the windows open and his eyes on the snow, watching and listening. We texted every few minutes:</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Anything?</span></p><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">No.</span></p><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Police are here.</span></p><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Ok.</span></p><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Firetruck is looking.</span></p><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Ok.</span></p><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Anything?</span></p><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">No.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">The officers were looking and left me. I didn’t know where to be. Outside it was freezing, but it was the only way to see and hear anything. I saw in a rocking chair on the porch with blankets wrapped around me until I was too cold. Inside, the dog demanded my attention; he didn’t care what else was happening, or maybe he sensed how unsettled I was and was trying his best to be close. I walked him up and down the driveway mindlessly. I made tea and sat more. Evie woke up, because she almost always wakes up in the night. She cried for me, like she always did, until I told her what was happening, that I was waiting to talk to the police, and she could just stay awake and sit on the couch. She sat almost silently with the dog, waiting.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">The thoughts that go through my head during these long, intense moments are not healthy. I’m not a calm or particularly patient person by nature; my anxiety, strengthened by the events of the last 13 years, takes over pretty quickly and my mind races. I am exhausted and feel like I will never sleep again. I worry about all the things that I am going to have to do - who I have to tell, what people will think, the terrible things I am going to have to see, say and do if she is not found safely. </span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I don’t remember exactly how it happened, but the police officer came back, and told me they had her. The firefighters had found her, running in the middle of the dark road on the other side of the neighborhood. She was okay. She kept running away from them; I told him to tell them to GRAB HER. </span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">I texted Chris and told him to get back, we had her. </span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">Before we saw her, they asked if we wanted an ambulance; they would take a while to arrive, so we needed to get them started. We said yes. She had been gone at least 2 hours, hypothermia was a major concern.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">The firetruck pulled up, and they hoisted her down from the seat. She jogged over to us and said, “I’m so cold.”</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">We brought her in, covered her with blankets and made her some cocoa. I slipped her wet shoes off - no socks - and tried to warm her freezing feet. As soon as the officers saw us talk to her, heard from us that her broken, slurred words were her typical baseline, watched her crawl into my lap and bury her face in my arm, they relaxed. They finally understood. They shifted from suspicious of us to sorry for us. </span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">She had fallen on her hands and knees at some point, but was unhurt. She complained of being cold, but had no signs of hypothermia or other injury. The ambulance arrived, and she refused to allow them to touch her; we apologized for bringing them all the way out for nothing. They checked her over, saw that she was stable and let us sign off that we had rejected care. We thanked everyone for their help and they filed out.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">We washed her hands and feet and put on clean pajamas. We sat numb for a while. We watched some mindless TV to help us calm down. We finally ambled toward bed again around 5 am, me in bed with Scarlett and Chris with Evie. Benny never woke up; he is the sleeping champion in our house.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">We woke up late the next morning, not sure how to proceed. There wasn’t much else to do, so we just continued with our plans….snow play, pizza, carrots for the Easter Bunny. We called a few people to just tell the story; it’s easier to tell it after, when it’s incredulous and funny that something so ridiculous has happened, yet again. </span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">And then we go back to our lives, thinking it won’t happen again, it couldn’t possibly, that we will be better next time.</span></p><br /><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space-collapse: preserve;">But, she did it again.</span></p>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com0tag:blogger.com,1999:blog-906621410106004328.post-91745788818901797962023-10-16T21:21:00.002-07:002023-10-16T21:21:16.404-07:00Thirteen - part 1<br /><br />We have come around the sun a few times since the last time I wrote; Scarlett is thirteen this week! <br /><br /><br /><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1xcxdac0bRRCgdEseYSL_RZKe6mXduYln-5-n1snbv4JhmF1HLq5FU6VCfBzWKZh9vwyRyU6YWaYtJ-fFCDvVa6tQVXdu70G1cesuMnIC60dB_TxhkuuaQdWO80FpHtjyKXkO5RmwJOvK1WToCgfGHvo1uI36O-qsk9BZ-qFy1nkxqoSb7t1pKmjiQwny/s3611/PXL_20231016_235945013.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1xcxdac0bRRCgdEseYSL_RZKe6mXduYln-5-n1snbv4JhmF1HLq5FU6VCfBzWKZh9vwyRyU6YWaYtJ-fFCDvVa6tQVXdu70G1cesuMnIC60dB_TxhkuuaQdWO80FpHtjyKXkO5RmwJOvK1WToCgfGHvo1uI36O-qsk9BZ-qFy1nkxqoSb7t1pKmjiQwny/s320/PXL_20231016_235945013.jpg" /></a></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBCuNvvADQHizeU4XICbYuv2DAdHvvobe5R0c5WXbJUy0wneQnGbm36B98e7_dzGiyH8HoZA26UANTjc5KgowNVnL7xL6e4d15CvlwwcnGDHK-svlmHvavC0h8aXst-238Sh8csVdzQtbh3soh00fSv_E4-7yfFN5_2MGwy6xd0-gl1g8VBK8I8tWxhoRM/s4080/PXL_20231014_165906699.PORTRAIT.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBCuNvvADQHizeU4XICbYuv2DAdHvvobe5R0c5WXbJUy0wneQnGbm36B98e7_dzGiyH8HoZA26UANTjc5KgowNVnL7xL6e4d15CvlwwcnGDHK-svlmHvavC0h8aXst-238Sh8csVdzQtbh3soh00fSv_E4-7yfFN5_2MGwy6xd0-gl1g8VBK8I8tWxhoRM/s320/PXL_20231014_165906699.PORTRAIT.jpg" /></a></div><div><br /></div>Scarlett at thirteen is probably the best Scarlett yet. She is funny, silly, independent in her own way and fascinating to know. Like all teenagers, she is aching to find ways to be her own person, to push the boundaries she has known and to try new things. She loves a good outfit - usually monochromatic - and has strong opinions about how her hair should be. She carries a Pokemon backpack with her most of the time - sometimes with snacks, sometimes with doll clothes. She loves her dolls and dresses them for occasions, often to match her own clothes if she can, and packs bags for them for our vacations, complete with bottles. She is still deeply attached to her favorite stuffed toy, Judy Hopps from Zootopia. Judy goes everywhere with her, and “waves” to people she passes. <br /><br /><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1PCnSXsFJpfG8clG9oclGxFKHbvNZeDFBAwsaK97VuA1PLk24xlonaDFnvPwlmWbynRWfPFytCxEZCtd5B1DbWu3yLIfp2QSMzHner4JHlPyLeCLAIzsKDqeFOJZcLAirHPB7wxJR4X3Cb50aD3rTiYhC2ZOTDinbuxrY-0yGuxY2eUGxcHaZPl9-hMJ-/s4080/PXL_20230713_160849143~2.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1PCnSXsFJpfG8clG9oclGxFKHbvNZeDFBAwsaK97VuA1PLk24xlonaDFnvPwlmWbynRWfPFytCxEZCtd5B1DbWu3yLIfp2QSMzHner4JHlPyLeCLAIzsKDqeFOJZcLAirHPB7wxJR4X3Cb50aD3rTiYhC2ZOTDinbuxrY-0yGuxY2eUGxcHaZPl9-hMJ-/s320/PXL_20230713_160849143~2.jpg" /></a></div><br /><br />The last year has been tumultuous for Scarlett - or for us - and I spent the last few weeks thinking about how to manage it. I started writing here 13 years ago to keep track of what was happening, and try to help explain and connect with others. The last year might be the most traumatic and challenging we have had since her first year, so I find myself back to needing to write it to remember it, to document it for ourselves, to share it so that anyone who wants to can try to understand the scope of what it means to travel the road of survivorship. I decided to write it in a few parts, so here is the disclaimer: There is a lot of good, and then things get a little dark, but she is okay. She is, in fact, great, as are the rest of us. So, if you decide to read further, know that we come out the other side okay.<br /><br />She loves her brother and sister. Benny is 8 and Evie is 4. They are her biggest cheerleaders, despite the frequent irritation they all cause each other. Siblings will be siblings. They are learning how to engage with her, and watching them use the things they learn from us and her therapists to get her attention and include her in their games warms my heart. She is not alone.<br /><br />It’s hard to describe her communication. She prefers to speak to communicate her thoughts, but she understands us better when we include sign language; unfortunately, she only has that from us at home, so she makes due everywhere else. She got new hearing aids this year that connect with Bluetooth to her tablet, and suddenly, she will wear them everywhere. She went from wearing them about 30 mins at a time, with a fight, to asking for them and keeping them in without issue for full days. She still uses familiar phrases to communicate most of the time, but will use longer sentences with novel ideas and words when she needs to - though we often can’t understand her on the first go. She is very observant and notices what is happening around her. She gets self-conscious of making mistakes and apologizes a lot, sometimes to fill when she isn’t sure what she is supposed to say.<br /><br />She loves music. She is listening to something most of the time at home, the louder the better. She loves the IHeartRadio Family app on her tablet where she can swipe between channels quickly. She has favorites that we hear her sing along to - One Call Away by Charlie Puth comes up a lot. She loves having a bluetooth speaker to play things LOUD. She carries them with her in backpacks or purses, puts them on the edge of the trampoline and sets them up next to the bathtub. She has gone through several little ones, and bemoans their loss every time one is broken. We keep looking at concerts to take her to, but they are so expensive and crowded I haven’t been brave enough for more than KidzBop. I looked again and again at the Taylor Swift tickets when her tour was coming through, but it seemed like just too much - and then the movie version came! I got tickets for her and I to go this weekend and she loved it. She got dressed up, and the fans there made it so fun for her with dancing, friendship bracelets and lots of compliments on her dress. <br /><br />--<div><br />Over the last year, she has begun to draw. She used to resist any writing or drawing, color with us for a few minutes at a time in a coloring book or on a restaurant menu but otherwise ignoring crayons. Her OT goals still include writing her name legibly and reasonably sized. But, then she discovered Number Blocks. She is OBSESSED. She loved the show for a while, and was happy to see and hear it. And then she started drawing the characters. On paper. On post-its. On books. On the floor, walls and her own skin. Everywhere. More than once we woke up in the night to her awake and drawing all over the walls with crayons, markers, sharpies, chalk, anything she could find.<br /><br /><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdpQlYVZWStJWaBtYl3siHWTvi1mbGJzFzMLwkNjLA4CanjWgdkx0udpyUFm0lmImp_9CCCi1zdH64YsmvvOBKMgmTstIhyphenhyphen9VKsGuw3OOBIBx0-reYgQvME1Rf1nhnJEPBn-liNMfWsqxmUIg2neX6Mvd1I8fv2Nn-1_JgB-O1SpY7kk0e_2vPy_QxkXj_/s4080/PXL_20231013_002034165.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdpQlYVZWStJWaBtYl3siHWTvi1mbGJzFzMLwkNjLA4CanjWgdkx0udpyUFm0lmImp_9CCCi1zdH64YsmvvOBKMgmTstIhyphenhyphen9VKsGuw3OOBIBx0-reYgQvME1Rf1nhnJEPBn-liNMfWsqxmUIg2neX6Mvd1I8fv2Nn-1_JgB-O1SpY7kk0e_2vPy_QxkXj_/s320/PXL_20231013_002034165.jpg" /></a></div><div style="text-align: center;">Mad about a tummy ache</div><div style="text-align: center;"><br /></div><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip0d_KiggKVYFPngOmMOPgmxeQNgsF7tTHsSxp8-KPcHdc0MIe_B34VHHXZv8coZcIHHzhE8-x-b_l8bNvtPMyBbnzSr7QorlPzCdmuqUn2vvKQnRm2_V1gUsBBY-0sOlfUrJ2XavmFhfOTaQXsCdy_MxSE6KyfutsboAFqBhVx58L3T8FwgQZSYvgm_e4/s4080/PXL_20231010_002547298.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip0d_KiggKVYFPngOmMOPgmxeQNgsF7tTHsSxp8-KPcHdc0MIe_B34VHHXZv8coZcIHHzhE8-x-b_l8bNvtPMyBbnzSr7QorlPzCdmuqUn2vvKQnRm2_V1gUsBBY-0sOlfUrJ2XavmFhfOTaQXsCdy_MxSE6KyfutsboAFqBhVx58L3T8FwgQZSYvgm_e4/s320/PXL_20231010_002547298.jpg" /></a></div><div style="text-align: center;">Number Blocks</div><br /><br /><br /><br /><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3HL7La1ERMwPCd9JM6D8myGvkRBiC1p4o_Jsm3tUnLw_5HB5JfKhc9xtzcZR3ivInRBu7T8y8CJWviIEym30N5yEOYMeKSiEwfaLxLnh-F9FlsbNziSew1JyCfGSv5Ui5RZKA30jiKXBXdc_-sVZrBz6R6H1P599-BzeaPtEirqtcodmoTP_BM2-ljzrf/s4080/PXL_20230716_185750760.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3HL7La1ERMwPCd9JM6D8myGvkRBiC1p4o_Jsm3tUnLw_5HB5JfKhc9xtzcZR3ivInRBu7T8y8CJWviIEym30N5yEOYMeKSiEwfaLxLnh-F9FlsbNziSew1JyCfGSv5Ui5RZKA30jiKXBXdc_-sVZrBz6R6H1P599-BzeaPtEirqtcodmoTP_BM2-ljzrf/s320/PXL_20230716_185750760.jpg" /></a></div><div style="text-align: center;">Scarlett sad, with Number Block #1 sad, because our dog was sick</div><div style="text-align: center;"><br /></div>We repeatedly told her not to draw on the walls, and showed her to use a piece of tape to hang her drawings. She then began to hang every page in her own galleries, and tape together pages to make bigger things. She still drifts to the walls and floor on occasion; it reminds me, I need to add some Magic Erasers to my shopping list…<br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFngT9l5nMJyrZU1pVFiSMm92vnIWSMpZ_aaOacX6JxNvpA2ITEFmkAy9C3emMFy0WtevI8E6rD8jdA5axJ2nprWHs9MYbSf6esH1dUKuYYEqWuDtCU3dxUhyphenhyphenFVOipV_aLTmJD4XYyj9K4VQSzDma2DH3VHxhxaLyI6bUtkTWzHfrKOvBb5Jtf8P81LCGy/s4080/PXL_20230815_021124212.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFngT9l5nMJyrZU1pVFiSMm92vnIWSMpZ_aaOacX6JxNvpA2ITEFmkAy9C3emMFy0WtevI8E6rD8jdA5axJ2nprWHs9MYbSf6esH1dUKuYYEqWuDtCU3dxUhyphenhyphenFVOipV_aLTmJD4XYyj9K4VQSzDma2DH3VHxhxaLyI6bUtkTWzHfrKOvBb5Jtf8P81LCGy/s320/PXL_20230815_021124212.jpg" /></a></div><div style="text-align: center;">Number Block in tape</div><div style="text-align: center;"><br /></div><br />Then she started to build them with other things. Blocks. Strips of paper she cut. Carrots at Disneyland. Train track toys. Boxes. Anything she can get her hands on. She dresses as the characters, and then uses a post-it or paper taped to her shirt as a label. “I’m One!” or “I’m Four!” When she isn’t being another number, she is just 12 - she sticks it to her shirt and makes sure everyone sees it - and we had better call her by that name, too.<br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHAdfh4wEsnCo7fXPUmjOGUeVzA7QvEQ0jn7u3n1BHJGzxc78XqNFwWwMI1cPCBoKMw5xyp4vr7eHEvHekw69k4Y16coIPd4RScdcuIAWxJTbbwtX9-2feyu160GqY1u7rP20idVgZmKy9drzAfGbpBLLvnKQF8qyLGmIfo6HWvI_71kAU3RlTPj1VkaeX/s4080/PXL_20230715_215909969.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHAdfh4wEsnCo7fXPUmjOGUeVzA7QvEQ0jn7u3n1BHJGzxc78XqNFwWwMI1cPCBoKMw5xyp4vr7eHEvHekw69k4Y16coIPd4RScdcuIAWxJTbbwtX9-2feyu160GqY1u7rP20idVgZmKy9drzAfGbpBLLvnKQF8qyLGmIfo6HWvI_71kAU3RlTPj1VkaeX/s320/PXL_20230715_215909969.jpg" /></a></div><div style="text-align: center;">Number Block in road tracks</div> <div style="text-align: center;"><br /></div>She has filled sketchbook after sketchbook, gone through reams of drawing paper and rolls of tape, and boxes and boxes of markers. She has branched out from only Number Blocks and draws herself and other people and her favorite toys. She uses her drawings to explain how she is feeling - Scarlett with a sad face, Scarlett with a tummy ache (sad face + scribble on belly), Scarlett loves Mommy (many hearts). She draws bunnies, cats, rainbows and her siblings. Sometimes she adds words, or draws what she wants us to know (while I type this, she is sitting beside me drawing the pink cupcakes she wants for her birthday celebration.)<br /><br />I am so happy she has found this way to express herself. I hope we can continue to foster this skill for function and joy. If she can’t make her mouth say the words she wants to tell me, I am happy to take it in crayons.<br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhniiCXrHZsp0BzTq5ezN-phW7T312uH3y28OYML01G0KoOo6ChMejd7LKjrDkKuPlRBqJMukS3M6ESJPjnHFIRkSPE4h3a4FTUTueJXq5TJy5HkHNghIPM1rMqe-seGBhItw6wdydOZ228kQMHoeXmYzE0oVWHYdzz20SNsJ8Yua8S2M3SQrm_xzcRJ9jo/s4080/PXL_20230917_050544347.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhniiCXrHZsp0BzTq5ezN-phW7T312uH3y28OYML01G0KoOo6ChMejd7LKjrDkKuPlRBqJMukS3M6ESJPjnHFIRkSPE4h3a4FTUTueJXq5TJy5HkHNghIPM1rMqe-seGBhItw6wdydOZ228kQMHoeXmYzE0oVWHYdzz20SNsJ8Yua8S2M3SQrm_xzcRJ9jo/s320/PXL_20230917_050544347.jpg" /></a></div><div style="text-align: center;">Mommy, Scarlett, Benny and Evie</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><br /></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><p></p></div>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com1tag:blogger.com,1999:blog-906621410106004328.post-39437484178683191502020-10-17T22:56:00.003-07:002020-10-17T22:56:43.131-07:00Decade<p><span style="font-size: 11pt; white-space: pre-wrap;"><span style="font-family: verdana;">It can’t possibly be ten years. </span></span></p><span id="docs-internal-guid-0f801d40-7fff-e7e8-4ff8-d14669d31159"><span style="font-family: verdana;"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Ten years ago, we walked into the hospital to have a baby. Nothing has ever been the same.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-RlgUHXCNBLI/X4vKyZRmfrI/AAAAAAABZ_A/aLjwy7QF6ho_8jEPBkFvoWn6XGJmBxzIwCPcBGAsYHg/s1600/IMG_0141.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" src="https://1.bp.blogspot.com/-RlgUHXCNBLI/X4vKyZRmfrI/AAAAAAABZ_A/aLjwy7QF6ho_8jEPBkFvoWn6XGJmBxzIwCPcBGAsYHg/s320/IMG_0141.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-0IOGaxc_cPE/X4vKyVr3aPI/AAAAAAABZ_A/9b-HfraNUjM70jQ9hB0A53TstALNl2N7QCPcBGAsYHg/s1600/P1040178.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1061" data-original-width="1600" src="https://1.bp.blogspot.com/-0IOGaxc_cPE/X4vKyVr3aPI/AAAAAAABZ_A/9b-HfraNUjM70jQ9hB0A53TstALNl2N7QCPcBGAsYHg/s320/P1040178.JPG" width="320" /></a></div>Ten years ago, I knew so little. Yes, about cancer, about parenting, about chemo and therapy and IEPs. But about me. About us. I don’t even know who we were back then. I don’t remember how I thought or what was important or why we did anything. I know it was me, I remember the events, but to look back and think about what has happened over the last decade is only to say we have transformed.</span></span><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Ten years later, Scarlett has made us into so much more than we would have ever been. She has forced us to grow, to consider, to prioritize, to imagine. She has brought us the most profound challenges and the most epic rewards. That baby from 10 years ago was the tiny seed of a life that we could not have envisioned, and together we have grown stronger and more powerful than we ever could have been. </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-bR38C9ZLnmA/X4vQ1aTz-6I/AAAAAAABZ_0/xhhMbumQxLQ-wGdzxNpzYgLX7SbDPC-YACLcBGAsYHQ/s2048/IMG_20190823_155242_040.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1638" height="320" src="https://1.bp.blogspot.com/-bR38C9ZLnmA/X4vQ1aTz-6I/AAAAAAABZ_0/xhhMbumQxLQ-wGdzxNpzYgLX7SbDPC-YACLcBGAsYHQ/s320/IMG_20190823_155242_040.jpg" /></a></div><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">It’s always interesting to read what I wrote before (another two years, oh well). As far as we have come, we always seem to be in some of the same places. She is healthy, 7 years off chemo, and more independent than ever. She still loves many of the same things - dressing up (though she prefers jeans and a carefully-chosen top to dresses), dolls, and Shakira. She has left behind princesses and Mickey for Pokemon, which she discovered entirely on her own thanks to her adept control of Netflix. She is still hilarious and loves anything silly. She is loving and sweet, even though sometimes it is hidden under some less-friendly behaviors.<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-sHlIsBoVV3I/X4vP9x7pjvI/AAAAAAABZ_o/Un6ZUIjfBgIE_8f9nsZ8FU1rmHU5Xl20wCPcBGAsYHg/s4032/PXL_20201016_132545758.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://1.bp.blogspot.com/-sHlIsBoVV3I/X4vP9x7pjvI/AAAAAAABZ_o/Un6ZUIjfBgIE_8f9nsZ8FU1rmHU5Xl20wCPcBGAsYHg/s320/PXL_20201016_132545758.jpg" /></a></div></span></span><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">There is an endless list of challenges that we face day-to-day, month-to-month; we are learning how to adapt our life to her needs rather than wait for her to change. She still wakes up incredibly early most days. She still runs as fast and as far as she can at the first opportunity. We have added alarms, taller fences, cameras and locks and still check and double check her location every few minutes during the day. She is still taking medication to help her brain attend to surrounding stimuli and also to bring more impulse control; they don’t really make much difference, but we haven’t given up. We have added a behavior therapist to her team, but we have had a terrible time getting a regular provider with the appropriate skills to actually be helpful, so we’re waiting for yet another to get up to speed.</span></span></p><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-M3-_q36nU0s/X4vXn934oUI/AAAAAAABaBU/X85mdm5UKzcY9PYRamH58tVDZNjbXto1ACLcBGAsYHQ/s2048/P1012175.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://1.bp.blogspot.com/-M3-_q36nU0s/X4vXn934oUI/AAAAAAABaBU/X85mdm5UKzcY9PYRamH58tVDZNjbXto1ACLcBGAsYHQ/w320-h240/P1012175.jpg" title="Rockwall climbing at Camp Arroyo" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-R395oldg2dk/X4vXoexakEI/AAAAAAABaBY/BOfB-Vpg29Enz2LMVQebbZ3odJNjAvu8ACLcBGAsYHQ/s2048/P1012212.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://1.bp.blogspot.com/-R395oldg2dk/X4vXoexakEI/AAAAAAABaBY/BOfB-Vpg29Enz2LMVQebbZ3odJNjAvu8ACLcBGAsYHQ/w320-h240/P1012212.jpg" title="Made it up the pole, across the wire and rode the zipline down!" width="320" /></a></div><br /><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Her speech has improved since we have been home together more. She uses many more complete sentences - “Do you want to play with me?” “I have a present for you!” “What are you thinking?” - but often still babbles and needs one of us to help her communicate with anyone else. We are seeing improvements in her fine motor skills, and are always looking for ways to keep her physically active. Her preference is always to snuggle, listen to music on her tablet or play with toys on the floor. </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-DKTbXXs_00A/X4vP9881mKI/AAAAAAABZ_o/1jLY8_vZHroslBJp-YmlQrMkt2M5fK7NACPcBGAsYHg/s4032/PXL_20200919_021616099.NIGHT.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="3024" data-original-width="4032" src="https://1.bp.blogspot.com/-DKTbXXs_00A/X4vP9881mKI/AAAAAAABZ_o/1jLY8_vZHroslBJp-YmlQrMkt2M5fK7NACPcBGAsYHg/s320/PXL_20200919_021616099.NIGHT.jpg" width="320" /></span></a></div><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">School is a work in progress always. Pandemic aside, we moved her to a specialty program that we had hoped would be good but we are increasingly concerned about the lack of support. I don’t know what will happen, but at this point, it does not matter much, since we aren’t in actual school right now thanks to that rotten little virus. I feel like we’re out of options at this point, so we are just waiting out the school closures and hoping for the best whenever we get back to school.</span></span><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-A8YmhWv1kG4/X4vNtOEoZCI/AAAAAAABZ_Y/vCdbH11VqrUpbUL4Q1IX1jUyj8rrm5dZwCPcBGAsYHg/s4032/IMG_20200717_123951.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://1.bp.blogspot.com/-A8YmhWv1kG4/X4vNtOEoZCI/AAAAAAABZ_Y/vCdbH11VqrUpbUL4Q1IX1jUyj8rrm5dZwCPcBGAsYHg/s320/IMG_20200717_123951.jpg" /></span></a></div><span style="font-family: verdana;"><div><span style="font-family: verdana;"><br /></span></div>At her last annual MRI (all clear!) we discussed with her doctor how challenging it is to explain and categorize Scarlett’s needs the further we get from diagnosis and treatment. She said we need to start looking at more resources and support as a Traumatic Brain Injury (TBI) than brain cancer. Scarlett’s needs at this point and moving forward are as much or more related to the stroke she had in surgery and the physical damage to her brain from the tumor’s position and rapid growth than from the tumor type or the chemo. This is a whole new ball game that we have not really explored. I assume there are a lot of crossovers, but it hasn’t been a good time to delve into a new project just yet. </span><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-T6cmqQTmdzE/X4vNtD50KhI/AAAAAAABZ_Y/rumrxN2tsSshU2Tizd_6eeD1alP9M1O_QCPcBGAsYHg/s2592/20191129_133551.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="2592" data-original-width="1458" height="320" src="https://1.bp.blogspot.com/-T6cmqQTmdzE/X4vNtD50KhI/AAAAAAABZ_Y/rumrxN2tsSshU2Tizd_6eeD1alP9M1O_QCPcBGAsYHg/s320/20191129_133551.jpg" /></span></a></div><span style="font-family: verdana;">We are in the process of moving nearly all of her medical support to UCSF from Stanford. They offer a much more comprehensive after-care program that we just were not getting. If nothing else, we are hoping that new eyes and ears will try new things and help us problem-solve some of the lingering issues we have been dealing with for the last several years. Most of the appointments we had to move this process along were cancelled for COVID and have not been able to be rescheduled, but we are in the process of sleep studies, new neuropsych testing, medical speech therapy and more. Hopefully things settle down enough that we can get back to our regular schedule of appointment after appointment.<span style="font-family: verdana;"><img border="0" data-original-height="2268" data-original-width="4032" src="https://1.bp.blogspot.com/-RDl_uI9Zp4k/X4vNtEBIWAI/AAAAAAABZ_Y/oRm5CTzzL28HOt2WVsEcImMs1s1pqmMoQCPcBGAsYHg/s320/20190719_121909.jpg" width="320" /></span></span><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Then, there’s the rest of us.</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">We adopted Benny when he was 3.5. He is now 5 and started kindergarten. He is just the coolest. He loves Hot Wheels and reading, and anything he can push buttons on or take apart. He is a sweet and gentle kid that asks a constant stream of thought-provoking questions that I can never quite keep up with. </span></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-bYB5NI_L2js/X4vNtDsoMDI/AAAAAAABZ_Y/y81mgc2hkFASXJCLeZGRosRmPeS2IINrwCPcBGAsYHg/s4032/00100trPORTRAIT_00100_BURST20200513143444372_COVER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://1.bp.blogspot.com/-bYB5NI_L2js/X4vNtDsoMDI/AAAAAAABZ_Y/y81mgc2hkFASXJCLeZGRosRmPeS2IINrwCPcBGAsYHg/s320/00100trPORTRAIT_00100_BURST20200513143444372_COVER.jpg" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-eFL7kIzG2eg/X4vNtCNwPwI/AAAAAAABZ_Y/gY71t8fdQtgyDPDy-tyY6mZ009uSiYHfwCPcBGAsYHg/s4032/00100trPORTRAIT_00100_BURST20200516110907356_COVER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://1.bp.blogspot.com/-eFL7kIzG2eg/X4vNtCNwPwI/AAAAAAABZ_Y/gY71t8fdQtgyDPDy-tyY6mZ009uSiYHfwCPcBGAsYHg/s320/00100trPORTRAIT_00100_BURST20200516110907356_COVER.jpg" /></span></a></div></div><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">A few weeks after his adoption was finalized, we were feeling good. We were ending the holiday break from school after our first Christmas as a family of 4. We had a short, casual conversation about how the ups and downs of fostering had been so worth it, and maybe we would try again some day.</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Days later, a call came. We ignored it at first - why would the social worker call so late? Must be a mistake. And then we heard a message in the morning to call right away. I headed to work while Chris returned the call…</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">A healthy 2 day-old baby girl needed to go home with someone that day. Could we take her?</span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://1.bp.blogspot.com/-F2Um6NkAvaA/X4vXnvzAeYI/AAAAAAABaBQ/mQ1BWEmEBAcIQchLQoiz4kVNZYR2VqUTACLcBGAsYHQ/s2048/IMG_9439.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1365" data-original-width="2048" src="https://1.bp.blogspot.com/-F2Um6NkAvaA/X4vXnvzAeYI/AAAAAAABaBQ/mQ1BWEmEBAcIQchLQoiz4kVNZYR2VqUTACLcBGAsYHQ/s320/IMG_9439.jpg" width="320" /></a></span></div><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-RDl_uI9Zp4k/X4vNtEBIWAI/AAAAAAABZ_Y/oRm5CTzzL28HOt2WVsEcImMs1s1pqmMoQCPcBGAsYHg/s4032/20190719_121909.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div><span style="font-family: verdana;">And that’s how Everly came to us. We had about 8 hours to get ready. We had gotten rid of all the baby gear, passed on all the clothes and toys. Friends from work ran to grab things from their garages. I stopped at Target for a few staples. And she came home at dinnertime.</span><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><br /></span></div><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;"><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-KeZ42521Hyg/X4vNtEu3siI/AAAAAAABZ_Y/NpBKJgSCb540lZ5LHgLyhELeiJbsbEmYACPcBGAsYHg/s4032/20190228_202217.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://1.bp.blogspot.com/-KeZ42521Hyg/X4vNtEu3siI/AAAAAAABZ_Y/NpBKJgSCb540lZ5LHgLyhELeiJbsbEmYACPcBGAsYHg/s320/20190228_202217.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-A1wgOf28Gwc/X4vNtI7ZtbI/AAAAAAABZ_Y/eW0bT7Qq13UjGNTQrAcrBrCIGqrD7wUHQCPcBGAsYHg/s4032/20190113_161212.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" src="https://1.bp.blogspot.com/-A1wgOf28Gwc/X4vNtI7ZtbI/AAAAAAABZ_Y/eW0bT7Qq13UjGNTQrAcrBrCIGqrD7wUHQCPcBGAsYHg/s320/20190113_161212.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-VTVJ-4MYwT4/X4vYjvL1tdI/AAAAAAABaB4/iXxBP2a9DT83XTPOBsFCVHAFPTZn8WG9ACLcBGAsYHQ/s2048/20190218_202649.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://1.bp.blogspot.com/-VTVJ-4MYwT4/X4vYjvL1tdI/AAAAAAABaB4/iXxBP2a9DT83XTPOBsFCVHAFPTZn8WG9ACLcBGAsYHQ/s320/20190218_202649.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div>Scarlett and Benny did not get much chance to adjust to the idea of being a big brother and sister, but they adapted really well. We all just made it work together. We had trips planned, so she just came along. I didn’t really have time off available, so I worked with a newborn at home and the big kids to manage. And it was all fine. We had several months of unknowns as we navigated the foster system with her; it was very different than our previous experiences. However, the decision was made that she would stay and we jumped at the chance to finalize her adoption as soon as possible.<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-5tkDE_n__L8/X4vXm2VDSaI/AAAAAAABaBE/HHehI61wZ90wLpenp3niPZLpAlsJrS2hwCLcBGAsYHQ/s600/E%2B-%2BFive%2BMonths.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="413" height="320" src="https://1.bp.blogspot.com/-5tkDE_n__L8/X4vXm2VDSaI/AAAAAAABaBE/HHehI61wZ90wLpenp3niPZLpAlsJrS2hwCLcBGAsYHQ/s320/E%2B-%2BFive%2BMonths.jpg" /></a></div></span></span><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">And now she’s running, jumping, talking (and screaming!). She is almost 2, and hilarious. She knows EXACTLY what she wants (Elmo!) and what she hates (bed!) She is an amazing, tiny firecracker that keeps us all on our toes (a lot like her big sister!)</span></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-xagDq636JlI/X4vNtAnRktI/AAAAAAABZ_Y/u26a2rg-Bw8GWA4WvnKw2XmJj8hP02nqACPcBGAsYHg/s4032/00100lrPORTRAIT_00100_BURST20200522110501217_COVER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://1.bp.blogspot.com/-xagDq636JlI/X4vNtAnRktI/AAAAAAABZ_Y/u26a2rg-Bw8GWA4WvnKw2XmJj8hP02nqACPcBGAsYHg/s320/00100lrPORTRAIT_00100_BURST20200522110501217_COVER.jpg" /></span></a></div><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-I4PsP1Q2qjs/X4vP92P1T4I/AAAAAAABZ_o/mMJOZ40BzvEEYms-BjAbL_LzXroD2QfiwCPcBGAsYHg/s4032/PXL_20201011_170411295.PORTRAIT-01.COVER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://1.bp.blogspot.com/-I4PsP1Q2qjs/X4vP92P1T4I/AAAAAAABZ_o/mMJOZ40BzvEEYms-BjAbL_LzXroD2QfiwCPcBGAsYHg/s320/PXL_20201011_170411295.PORTRAIT-01.COVER.jpg" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><br /></span></div><a href="https://1.bp.blogspot.com/--O-P3QI3hJQ/X4vNtKGuNZI/AAAAAAABZ_Y/nxaibRBthBMFz47s7sznBo8sBMJb8Ru4gCPcBGAsYHg/s4032/00000PORTRAIT_00000_BURST20200815093731806.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://1.bp.blogspot.com/--O-P3QI3hJQ/X4vNtKGuNZI/AAAAAAABZ_Y/nxaibRBthBMFz47s7sznBo8sBMJb8Ru4gCPcBGAsYHg/s320/00000PORTRAIT_00000_BURST20200815093731806.jpg" /></span></a></div><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Chris started a new business in the midst of the pandemic. He is using his acquired skills around supporting people with disabilities to become an independent facilitator for CA’s Regional Center clients. He helps families like ours fight for budgets and services that will improve the life of their disabled family member. He has more clients than he can manage on his own, and has been bringing in new people to train and help support the ever-growing need.<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-weLWnKoIuPI/X4vNtMXp08I/AAAAAAABZ_Y/BiC0mLdATYQYje-AJYE5a5QEOEujUoCzQCPcBGAsYHg/s4032/20191109_164500.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2268" data-original-width="4032" src="https://1.bp.blogspot.com/-weLWnKoIuPI/X4vNtMXp08I/AAAAAAABZ_Y/BiC0mLdATYQYje-AJYE5a5QEOEujUoCzQCPcBGAsYHg/s320/20191109_164500.jpg" width="320" /></a></div></span></span><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">I’ve been teaching from home, or from an empty classroom, since March. It’s been nothing short of insane relearning everything I have ever done as a teacher. It’s leveling out, starting to feel like some version of normal, and likely to continue through the new year at this point.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Chris and I both volunteer with the <a href="www.pbtf.org" target="_blank">Pediatric Brain Tumor Foundation</a> as parent mentors, trying to bring a little light to those who are still walking in the darkness we have been through. I meet parents of new kids diagnosed with the same tumor every so often, and am shocked to find out these teeny babies are still getting the same highly-toxic treatment that Scarlett did. The fight is not over for more awareness, funding and research to find better treatments, therapies and cures.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-hXWJLIfNbUE/X4vYrDC33HI/AAAAAAABaB8/K-R2V9BovC4CbNiFDnxINDcXQE0V-j0VgCLcBGAsYHQ/s2048/2019-05-04%2B16.08.38.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-hXWJLIfNbUE/X4vYrDC33HI/AAAAAAABaB8/K-R2V9BovC4CbNiFDnxINDcXQE0V-j0VgCLcBGAsYHQ/w240-h320/2019-05-04%2B16.08.38.jpg" title="Okizu 2019" width="240" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-size: 14.6667px; white-space: pre-wrap;">We lost a treasured place this summer when <a href="www.okizu.org" target="_blank">Camp Okizu</a> <a href="https://www.sacbee.com/news/california/fires/article245622730.html" target="_blank">burned in a wildfire. </a> There is hope that they will rebuild, but after missing camp due to COVID, knowing we won't be back for a long time to come is sad. The other camp we visit often, hundreds of miles from Okizu, was threatened by fires but stayed safe. </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-yIRftAmnUHo/X4vRVrSQfCI/AAAAAAABaAE/MO00uO9nJsUg5q88YwFhioWQK0Vk8Ao4gCLcBGAsYHQ/s2048/81592916_10108152758528383_5922445191750352896_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="2048" data-original-width="1365" height="320" src="https://1.bp.blogspot.com/-yIRftAmnUHo/X4vRVrSQfCI/AAAAAAABaAE/MO00uO9nJsUg5q88YwFhioWQK0Vk8Ao4gCLcBGAsYHQ/s320/81592916_10108152758528383_5922445191750352896_o.jpg" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><br /></span></div><a href="https://1.bp.blogspot.com/-bmua3cfxvxo/X4vNtH3KDMI/AAAAAAABZ_Y/RGLTCR2TRIU8enhL5dulx9l7VGVDyNcQACPcBGAsYHg/s4032/20200103_171131.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="2268" data-original-width="4032" src="https://1.bp.blogspot.com/-bmua3cfxvxo/X4vNtH3KDMI/AAAAAAABZ_Y/RGLTCR2TRIU8enhL5dulx9l7VGVDyNcQACPcBGAsYHg/s320/20200103_171131.jpg" width="320" /></span></a></div><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;"><div><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>We are all healthy and happy, despite whatever 2020 wants to throw at us. </span></span><div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-jDPGc1YIMWk/X4vW95ATM9I/AAAAAAABaAw/1rGX9RgYAYkeMA0GZw38f7l-2CawCS5HwCLcBGAsYHQ/s4032/00100lrPORTRAIT_00100_BURST20200615113336449_COVER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://1.bp.blogspot.com/-jDPGc1YIMWk/X4vW95ATM9I/AAAAAAABaAw/1rGX9RgYAYkeMA0GZw38f7l-2CawCS5HwCLcBGAsYHQ/s320/00100lrPORTRAIT_00100_BURST20200615113336449_COVER.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-5RiVuPBCIn0/X4vW93BHiuI/AAAAAAABaA0/yzCTNtV4bPw2UXp36J2gPyApPRqj0t8PwCLcBGAsYHQ/s3264/00100sPORTRAIT_00100_BURST20200208145319848_COVER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2448" data-original-width="3264" src="https://1.bp.blogspot.com/-5RiVuPBCIn0/X4vW93BHiuI/AAAAAAABaA0/yzCTNtV4bPw2UXp36J2gPyApPRqj0t8PwCLcBGAsYHQ/s320/00100sPORTRAIT_00100_BURST20200208145319848_COVER.jpg" width="320" /></a></div></div><span style="font-size: 14.6667px; white-space: pre-wrap;"><span style="font-family: verdana;"><br /></span></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"></div><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Will the next ten years bring this much? I can’t see it now, but I’ve learned that the universe knows better than me. </span></span></div><div><br /></div></div>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com17tag:blogger.com,1999:blog-906621410106004328.post-16242854130073348812018-10-17T20:39:00.003-07:002018-10-17T20:39:39.443-07:00Eight<span style="font-family: Verdana, sans-serif;">It's been a long time. I have debated when to write, what to write, how to write.</span><br />
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<span style="font-family: Verdana, sans-serif;">Yesterday Scarlett turned 8 years old. I am always nostalgic on her birthdays. I miss her baby days, my baby days with her. I miss the tiny clothes, naps, and splashy baths. But I love this big girl, too.</span><br />
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<span style="font-family: Verdana, sans-serif;">We celebrated her birthday with family and friends and princess.</span><br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-hjAqa0gOoRg/W8Vfpgsl3FI/AAAAAAAAlTo/RooPpJX6OjUEommUloCDaGkJF26lJoDuQCLcBGAs/s1600/2018-01-18%2B20.02.47-1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" data-original-height="1566" data-original-width="1600" height="313" src="https://1.bp.blogspot.com/-hjAqa0gOoRg/W8Vfpgsl3FI/AAAAAAAAlTo/RooPpJX6OjUEommUloCDaGkJF26lJoDuQCLcBGAs/s320/2018-01-18%2B20.02.47-1.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Scarlett and Rapunzel, both going through a bandaid phase</span></td></tr>
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<span style="font-family: Verdana, sans-serif;">It's been so long, but a lot has not changed. She loves stuffed animals, baby dolls and animals crackers. Her favorite color is still purple, but she picks pink things most of the time. She loves to sing - she got a karaoke microphone for Christmas last year and loves to rock out with her favorite Disney songs ("Try Everything" by Shakira from Zootopia is #1 by far.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">First day of first grade!</span></td></tr>
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<span style="font-family: Verdana, sans-serif;">Now she has discovered a love for clothes. She loves to dress up, or change outfits several times a day. She is particular about matching pieces that she likes together. She will choose a dress over pretty much anything else, unless there is something new - a new outfit wins over anything that has been worn before. She loves to shop online with me, choose something and then have it delivered - a very dangerous game! When any package arrives, she is ecstatic, and can't wait to see the package opened - only to be devastated when it is something boring (read: anything not for her.) As soon as she has a great dress on, you will find her dancing like a ballerina or setting up a show with her karaoke machine. She made a splash at school this year bringing her ukulele for an impromptu show. She is a performer!</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Dinosaur head. Backpack. Christmas leggings. Daddy's boots.</span></td></tr>
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<span style="font-family: Verdana, sans-serif;">Medically, she is stable. Most importantly, no change on annual MRIs. That puts us at 5 years off treatment, a big milestone. We removed her g-tube in May after not using it for a full 6 months. After years of keeping it from being pulled out and having an emergency replacement on hand at all times, we pulled it out ourselves at home on the couch and it healed up almost completely within a day. She still makes a terrible mess when she eats, but she gets enough calories in to maintain her weight and enough liquids to keep her hydrated. It's not perfect, but it's enough to build on without a tube.</span><br />
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<span style="font-family: Verdana, sans-serif;">The biggest challenge that we deal with is behavior. She is relatively happy and compliant most of the time, but when she is unhappy, frustrated or confused, she doesn't really have the language to express herself. Instead, she acts out by hitting, pinching or biting, not to hurt but to get your attention. She resorts to biting her own hand, which has caused extensive skin damage over the last few years. Thankfully she has eased up enough that skin has healed a little and is not as cracked and bleeding. It is painful for her, but she can't stop herself, and we can't take her hand away (though we have tried gloves and even asked about a cast.)</span><br />
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<span style="font-family: Verdana, sans-serif;">She als elopes; if she sees an open door, she goes for it. She has escaped our house several times, n matter how many locks we add (we currently have a deadbolt with a sensor alarm, a chain lock up high, and a Ring doorbell with motion alarms). We have had to call the police twice when she has escaped and we could not find her. Over the summer, she escaped from her camp and was found running down the road after kicking off her shoes. Even our yard is not always safe; she has pulled down sections of the fence to go to a neighbors yard and kicked out a panel of the gate to squeeze through and run down the street. We have alerted a of our neighbors to PLEASE take her hand and bring her home if she is out on her own. We added a <a href="https://www.jiobit.com/" target="_blank">Jiobit</a> GPS tracking device to her daily outfits. It allows us to track her on our phones...if she will wear the tag. We were doing well until this week, when she tossed it somewhere and it disappeared (we think it got broken and will no longer connect to the app.) It keeps up up at night - every sound makes us jump and check all the doors. We can barely carry a conversation when we are out because our heads are constantly swiveling around to keep her in eyesight. I hope she outgrows the desire to run soon...there are only so many ways to keep her in as she gets taller, stronger and craftier.</span><br />
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<span style="font-family: Verdana, sans-serif;">She made it though kindergarten last year. It wasn't always easy, but we made some adjustments along the way. After much discussion with various doctors and other parents of brain tumor survivors, we started Scarlett on a low dose of Adderall for attention. It doesn't fix everything, but it helps her be a little more aware of herself and what is happening around her. It helped her stop having accidents at school (because she was ignoring her body's cues), gave her the focus to get socks and shoes on by herself and brought about some minor miracles of her noticing to put her plate in the sink or wiping her own nose. We are still tweaking dosages with her psychiatrist, but it seems to be an overall win for us all. The only real downside right now is that she is going through a loooong phase of waking up early...like fully-dressed-in-princess-gear-at-3am early. We have an <a href="https://www.amazon.com/Wake-Childrens-Alarm-Clock-Night-Light/dp/B002RNKOM2/ref=asc_df_B002RNKOM2/?tag=hyprod-20&linkCode=df0&hvadid=191991632329&hvpos=1o1&hvnetw=g&hvrand=11416720513545665888&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9032040&hvtargid=pla-302915584716&psc=1" target="_blank">OK to Wake</a> clock, a reward chart for when she stays in bed and we take turns to get up with her, but it's been several months now. We just want to sleep until 6 once in a while.</span><br />
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<span style="font-family: Verdana, sans-serif;">School has been a challenge for all of us. Last year, she attended the school where I teach. She was much adored by other students. She was figuring out the routines. Then, after we moved last year, her transfer into my district was denied and we made the last-minute decision to stop fighting administrators that were making our lives miserable and see what happened with our local schools. Luckily, it has been a great move for her, and while we are still fine-tuning her school needs, it seems to be working well for her and us. She knows a lot of words, and is starting to read. She writes her name and counts everything.</span><br />
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<span style="font-family: Verdana, sans-serif;">Over the last two years, we have been trying to get Scarlett connected with services and supports that will enhance her day-to-day life, give her independence as she is ready for it and help us connect with other kids and families. First, we found a camp that gives her weekends, and now full weeks, away. <a href="http://www.viaservices.org/services/via-west" target="_blank">Via West</a> is respite camp for kids and adults with disabilities. Scarlett gets 21 days each year of camp with a 1:1 aide, where she gets to do crafts, cooking, field trips and other adventures. She loves packing up her sleeping bag and going to camp - I don't think she misses us a bit.</span><br />
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<span style="font-family: Verdana, sans-serif;">We have been trying to get her into sports or classes for a long time, but finding the right class has been a challenge. We want her to have the experience of doing it "on her own" but most special needs classes through rec centers or private lessons are intended for the parents to be the child's aide through the class. There are some excellent programs in our area that are designed for kids like her, but there are long wait lists...we have been on the waitlist for a swimming program for more than 2 years. We just joined an equestrian therapy waitlist with an expected wait time of 2+ years. But we did recently find an inclusive dance class for the whole family and are getting registered with the Special Olympics in our area for the Spring.</span><br />
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<a href="https://4.bp.blogspot.com/-iOap9cZsgKM/W8futh1u8rI/AAAAAAAAlVg/dFLcxATCbIUuYbcUSZR53U4SfCLB89qKgCLcBGAs/s1600/2018-07-31%2B11.47.28.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://4.bp.blogspot.com/-iOap9cZsgKM/W8futh1u8rI/AAAAAAAAlVg/dFLcxATCbIUuYbcUSZR53U4SfCLB89qKgCLcBGAs/s320/2018-07-31%2B11.47.28.jpg" width="240" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">The biggest thing that has happened for Scarlett over the last two years is that she is now a big sister! After her 6th birthday, we decided that we wanted to grow our family. We chose to go through the process to become foster parents with the plan to adopt. We were certified in February 2017 and got our first placement, a baby boy, in April. Over the next few weeks, we helped his doctors and social workers discover that there was much more support needed than was originally understood; we happen to have a very specific set of skills involving infant neurology, and we were able to help connect him with some very much needed services. We all made the decision that his needs would be better met in a different placement, so he moved that summer. It was overwhelming, exhausting and disappointing to have to say goodbye, but it was the right thing for him and us.</span><br />
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<span style="font-family: Verdana, sans-serif;">Right as we were learning he would be leaving, we found out that we would have to move. Were able to buy a house a few cities away, which was a welcome surprise and blessing - no more rentals being sold out from under us! A few months after we were moved in and settled, we reconnected with the adoption agency and told them we were ready to try again...and a few months later, they had a little boy that was ready to come live with us.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Daddy and little brother watching planes land</span></td></tr>
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<span style="font-family: Verdana, sans-serif;">We will finalize his adoption next month. He is 3.5 and the sweetest, spunkiest little boy. He has adjusted so well over the last 7 months and is a complete joy. We can't share his photo yet, but they are so sweet together (unless they are fighting!) They are brother and sister 100%. </span><br />
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<span style="font-family: Verdana, sans-serif;">So we are on to another year with more adventures and challenges. Scarlett is finding her way in the world and we are following close behind, trying not to get in her way. If you have hung in this long, thanks for caring to check in on our girl. I share on our <a href="https://www.facebook.com/starringscarlett/" target="_blank">Starring Scarlett Facebook</a> page slightly more frequently than here, or you can follow me on <a href="https://www.instagram.com/brandinamarina/" target="_blank">Instagram</a> if you want to see more.</span><br />
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<span style="font-family: Verdana, sans-serif;">Until next time (maybe not two years from now)....</span><br />
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<br />Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com10tag:blogger.com,1999:blog-906621410106004328.post-11014784563257706312016-10-18T20:31:00.000-07:002016-10-20T20:11:14.501-07:00Spectacular Six<span style="font-family: "verdana" , sans-serif;">It has been a full year since I updated. I just reread my post from last year, and it made me laugh to see what has changed and what has not.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Scarlett is six! This weekend we celebrated her birthday with family and friends in a rainstorm. When people commented on the bad luck of rain, I reminded them that it rained the day she was born, too. Can't be too bad of luck!</span><br />
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<span style="font-family: "verdana" , sans-serif;">She is full of life. She wakes up with the sun ready to play and love, and fights going to bed so she can fit in a few more snuggles or an extra story. She fills every day with smiles and hugs.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Much of last year's post is still true - she still loves purple. She still loves to carry around her dolls, through now she makes them walk around and talk to things. She still sings a lot - and now carries around her new ukulele for random strumming sessions, or demands we all stand and dance when the ending credit songs play for her favorite movies.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Much of what she was doing this time last year has grown. She knows all her letters, capital and lowercase, numbers to 10, counting to 20, colors and shapes. Now we consistently get 2-3 words at a time, usually describing something she wants - "big bed", "TV on", "black shirt" "My Cosmo!" (our beleaguered dog who just barely tolerates her overly-enthusiastic love). She likes to get our attention by screaming "MAMA! DADA!" then just laugh when we look her way. She has some longer phrases that she uses - "I'll be right back!" She is relentlessly polite, saying please, thank you, bless you at every opportunity - even if she hears a sneeze from the other end of the house. A lot of her speech is still unintelligible, even to those of us who spend a lot of time with her. She is unphased - she will chatter on for paragraphs while we just nod and say "Oh, really?" She is showing herself to be much more of an oral/auditory communicator; she signs when she needs to get her point across, but she is much more likely to put effort into having her speech understood than to attempt a sign. This has been a signal we have been watching for as we look for the next school placements; that's not to say she won't be signing, but it may not be the biggest focus of her next placement.</span><br />
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<span style="font-family: "verdana" , sans-serif;">She gets physical and occupational therapy only at school now - she outgrew most of what was available. OT will will continue to be a need, both in and out of school, but we are waiting until her school schedule is a little more forgiving. She tires out in the afternoon with a long drive home and does not really have the stamina for therapy after.</span><br />
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<span style="font-family: "verdana" , sans-serif;">We have made some significant headway with potty training, and felt confidant enough to throw out the diaper pail! She is dry through the day most of the time and gaining independence slowly. I look forward to the days when we can go through ONLY 1-2 pairs of pants in a day!</span><br />
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<span style="font-family: "verdana" , sans-serif;">We have yet to get her feeding therapy in place. It's almost comical at this point, except that it's frustrating and disappointing. After going through months of denials, proposing alternatives, attempting to contact said alternatives, only to have them say they don't offer that service, to now being approved but waiting for the providers to actually be able to find a person with a schedule that can accommodate her...we've made baby steps but keep pushing. She wasn't going to just wait around, so she made some significant progress on her own. She will now eat a whole applesauce/baby food pouch on her own - sometimes even two. We brought them back into regular rotation when she got overly reliant on graham crackers. We were noticing her weight increasing a little too quickly, so we got the go-ahead to cut out one tube-fed meal a day and instead let her eat by mouth one meal a day. Then, while out to dinner one evening, she just up and decided she could use a straw. Both of these skills have been attempted for years, and we made NO progress all this time...until I suddenly thought of a way to explain the necessary mouth position in a way she could understand. It turns out that sucking on a straw is the same as kissing, and she's a pro at that! Giving her some independence with cups and pouches has encouraged her to be a more "productive" swallower, so it has been a win-win situation.</span><br />
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<span style="font-family: Verdana, sans-serif;">She has adopted one scary habit - "elopement." She gets out. And runs. The first time was last year - a gate was open, and she took off running, ending up at the school across the street. The staff there picked her up and had her in the office, about to call the police, when Chris breathlessly arrived. Someone outside saw him looking frantically for her and led him to the office. After that, we added a new reinforced gate and locks to the yard.</span><br />
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<span style="font-family: Verdana, sans-serif;">Then, this summer she got out again. This time, it was in the morning as we were getting ready to a long day of outings, company and a party. She just opened the front door and let herself out. Unfortunately, we didn't realize it for several minutes. She was nowhere to be seen. Chris jumped in the car to look; his mom was visiting and took off down the street. I was left in the front yard paralyzed. I couldn't go in any one direction because I had no idea which one was right. After a few minutes, I called the police. As I described what had happened, what she looked like and what officers were looking for, I was in hysterics. I could barely breathe. </span><br />
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<span style="font-family: Verdana, sans-serif;">A few minutes later, two cars pulled up in front of the house and I saw another two at the end of the street. Thankfully, she was just 2 blocks down - and the dog had gone with her and stayed close. When the officers approached her, she laughed and ran into the street. They finally blocked her into the parking lot of the school and I jumped into one of the cars to help catch them both. Even then, I struggled to hold on to her while I explained a little to the officers and they took her picture and created a file for her in case the situation should repeat itself. They gave her a sticker and sent us home to recover.</span><br />
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<span style="font-family: Verdana, sans-serif;">But that was just the beginning. She ran out that night during the party, effectively ending it. She did a few more time that weekend. We added a latch to the top of our front door. She climbs her highchair to reach it or watches for it to be left open. We added a child-proof lock on the handle and that stopped her for now...we're erring on the side of safety and try to use multiple locks just in case.</span><br />
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<span style="font-family: Verdana, sans-serif;">Now, she's started to do it at school too. Just yesterday, she got out through a door while they were playing outside. She was running down the street when someone saw her through the window and ran after her. Everyone was distraught - they have not had that problem in the 30 years of the school. New measures are in place to keep her in, and to keep her from having the chance to teach the other kids how she did it.</span><br />
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<span style="font-family: Verdana, sans-serif;">We have resorted to using a leash backpack when we dare to leave the house. It's the easiest way to keep a handle on her without her fighting us. She loves her "monkey backpack" and wears it around the house even when we are just at home, so I try not to feel too bad about it. We are working on getting behavioral therapy as part of her school and home services to help address it. It's harrowing to have her try to run down the street every time we take out the trash, so the goal is to help teach and reinforce the idea that she has to stay with us, and the boundaries of sidewalks. Hopefully we can get her to recognize the need to stay safe before we lose our minds!</span><br />
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<span style="font-family: "verdana" , sans-serif;">She has been through a few minor procedures in the last few months. She was referred to a new dentist that works through the hospital, and that offered some "perks," if you can call it that...since she can't really understand to sit still for dental x-rays or cleanings, they arranged to do a full cleaning and x-rays while she was under anesthesia for her MRI. This made for a long day for her, but killed two birds with one anesthesia IV. We discovered that she has some damage to her teeth (which her doctor feels is not from chemo...but how could it not be??), including very thin enamel and shallow roots on her permanent teeth and one whole tooth missing...like, it isn't in her jaw and will not grow in. It's not critical, but overall, a situation we will watch closely. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Last week, she had a procedure we have been eagerly awaiting - drool reduction! Her oral motor control is weak, and she has reduced sensation in her face, so she was always super drooly. Her chin, neck, cheeks, shirt - sometimes down to her belly button - were wet to the point of needing a new shirt multiple times a day. We tried a medication, but it just made her drool into a thick, snot-consistency (sorry - it was gross for us too!) So, we opted for the semi-long-term option: Botox. In a few minutes, they injected Botox into her passive salivary glands and BOOM! Less drool. Not none, and she still salivates with food, so that hasn't been an issue. A definite win for the laundry pile!</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">With cousin Caleb</span></td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-5_-E30Dke1M/WAbTBdPcVkI/AAAAAAAAgds/jmyagHF4AMgd0vNUzPmSGe3WkLYeU1_mwCEw/s1600/IMG_5848.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="259" src="https://1.bp.blogspot.com/-5_-E30Dke1M/WAbTBdPcVkI/AAAAAAAAgds/jmyagHF4AMgd0vNUzPmSGe3WkLYeU1_mwCEw/s320/IMG_5848.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">With cousin Olivia...somehow we don't have one with twin Andrew!</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">One of the most exciting moves has been to just annual MRIs - no sign of tumor activity for 4 years! Now we hit the brain tumor patient jackpot and only have to have scans once a year. She will continue these indefinitely - tumor growth monitoring will always be a part of her life. </span><br />
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<span style="font-family: "verdana" , sans-serif;">We learned some interesting things at her last appointment in September. Back when she was treated with chemo for the second time for recurrent tumor, we pressed the doctors for a "Plan B" in case the chemo didn't work; they told us we would go to Boston Children's Hospital for proton radiation. It was a long shot - she has had pretty much all the chemo her body can ever have, and any more would be severely damaging. Radiation is a last resort, and it was what we were prepared to do if needed. Boston - a cross-country trek for us from our home in the Bay Area - had the longest-running, most established proton therapy clinic for children, so our team felt most comfortable with that option should it be needed.</span><br />
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<a href="https://1.bp.blogspot.com/-TiUXXuAHw8k/WAbXcVeRnqI/AAAAAAAAgfA/TlMsLohjOZsXfT--ogMqmgz-S9cXbFQNACEw/s1600/2015-12-05%2B12.49.36.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://1.bp.blogspot.com/-TiUXXuAHw8k/WAbXcVeRnqI/AAAAAAAAgfA/TlMsLohjOZsXfT--ogMqmgz-S9cXbFQNACEw/s320/2015-12-05%2B12.49.36.jpg" width="320" /></a></div>
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<a href="https://1.bp.blogspot.com/-4igZGEdd0t0/WAbXpScVzMI/AAAAAAAAgfA/eWJRuU-1NwMn7EoHR1Bc7OlZWAVhBODEACEw/s1600/2016-06-04%2B14.44.26.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-4igZGEdd0t0/WAbXpScVzMI/AAAAAAAAgfA/eWJRuU-1NwMn7EoHR1Bc7OlZWAVhBODEACEw/s320/2016-06-04%2B14.44.26.jpg" width="180" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">We're just 4 years out from that conversation, and everything has changed. Proton radiation - a much safer, controlled alternative to the old radiation treatments - is available in several of our more-local hospitals and would likely not require us to leave home. But even better, advances in immunotherapy have made it the next best option. Doctors can now personalize treatment to patients' immune systems with a lot of doctor science that I don't understand, but am grateful for. When I asked what the "Plan B" would be should we see tumor growth now, Scarlett's doctor said she would hope we never have to consider radiation. I'm hedging my bets on no treatment ever, but I'm glad to hear that scary lasers aimed at by child's head are off the table.</span><br />
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-HTy5FmRa-bs/WAbkdoJwbTI/AAAAAAAAgfc/NLKWVUAbSYU1c1xkYyIhpg0jgBq7HxlhwCLcB/s1600/2016-07-27%2B13.31.09.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-HTy5FmRa-bs/WAbkdoJwbTI/AAAAAAAAgfc/NLKWVUAbSYU1c1xkYyIhpg0jgBq7HxlhwCLcB/s320/2016-07-27%2B13.31.09.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">Scarlett driving!</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">Chris and I are making some progress, too. We have lived in Scarlett-land since the minute she was born (or, really, since we found out I was pregnant). In many ways, that was how we survived - we focused on what she needed, and if that was taken care of, we were maxed out. Over time, things have slowly evolved to where we are beginning to find a balance. We are starting to look for ways to regain, or maybe just establish, who we really are as adults. I am forging ahead at work, pushing to bring technology to my students, going after new grants for materials and building new content for my students. Chris has several projects he is working on, from business ideas to advocating for an accessible playground in our city. He still spends a lot of time on Scarlett business, but he is finding ways to expand his projects when he can. </span><br />
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-DK15bCgiXb0/WAbkenQy3FI/AAAAAAAAgfg/ZelrLTgqyqwRCX5YCXj78sPxL56mKLBkQCLcB/s1600/2016-07-31%2B03.18.54.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://4.bp.blogspot.com/-DK15bCgiXb0/WAbkenQy3FI/AAAAAAAAgfg/ZelrLTgqyqwRCX5YCXj78sPxL56mKLBkQCLcB/s320/2016-07-31%2B03.18.54.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">Chris checking off his bucket list with skydiving!</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-jncPKoAxxho/WAbkdGKRDAI/AAAAAAAAgfY/Se3qpRJ47ywsFs6vQjuAMSUhS7mvJimQwCLcB/s1600/2016-08-11%2B08.06.47.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://2.bp.blogspot.com/-jncPKoAxxho/WAbkdGKRDAI/AAAAAAAAgfY/Se3qpRJ47ywsFs6vQjuAMSUhS7mvJimQwCLcB/s320/2016-08-11%2B08.06.47.jpg" width="252" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">Mommy and daddy-only trip in the summer!</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">Together, we embarked on a new diet in the summer. It has been pretty successful, and we've been able to stick to it for nearly 6 months. I've lost weight for the first time in my life that didn't involve childbirth, and have a slowly growing pile of clothes that are too big - a definite first. It's a big move for us psychologically, to put our own health as a priority. It signals a change in our state of mind that is healthier in many ways.</span><br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-fUGZrIBjJNs/WAbXuiXzjOI/AAAAAAAAgfA/1Qwq_FUIvAwhSjlDO5dzyVCceebAC_ZPwCEw/s1600/2016-08-25%2B06.57.16.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="253" src="https://1.bp.blogspot.com/-fUGZrIBjJNs/WAbXuiXzjOI/AAAAAAAAgfA/1Qwq_FUIvAwhSjlDO5dzyVCceebAC_ZPwCEw/s320/2016-08-25%2B06.57.16.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">First day of school 2016</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">We have also been looking for ways to give back more. We are becoming more active in the <a href="http://www.wecan.cc/We_Can/Home.html" target="_blank">California Chapter of the Pediatric Brain Tumor Foundation</a> (formerly We Can Pediatric Brain Tumor Network). We have been going to camps with them for years, and were asked to be parent leaders, so we give feedback and help plan camps and offer support to other families as we can. We have asked our main doctor at Lucile Packard to keep us in mind should parent advocacy or support roles open up - and she said she had already recommended us! We want to make more of this experience than just a sad story that happened to us once upon a time; we will keep looking for ways to support others and advocate for Scarlett and kids like her to give them the best lives they can have.</span><br />
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<a href="https://4.bp.blogspot.com/-kbvNugmX1v8/WAbSoXcNr4I/AAAAAAAAgds/fP6299n1SMkC9kkn1Ht_JavfONSJVTKJgCEw/s1600/_MG_0093.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="256" src="https://4.bp.blogspot.com/-kbvNugmX1v8/WAbSoXcNr4I/AAAAAAAAgds/fP6299n1SMkC9kkn1Ht_JavfONSJVTKJgCEw/s320/_MG_0093.JPG" width="320" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">We're all excited for one thing on the horizon...Disneyland! We are have always dreamed of taking Scarlett, and an opportunity has come up. We are in full Disney-fication mode - movies, t-shirts, dolls and birthday parties, getting Scarlett ready to understand some of the magic at the Happiest Place on Earth. She loves rides, recognizes characters and is learning about parades and shows. I'm researching all the ways we can make the most of our trip, and make it as Scarlett-friendly as we can. We're going to an <a href="https://foxrwc.showare.com/eventperformances.asp?evt=88" target="_blank">Autism-friendly stage performance of Beauty and the Beast</a> across the bay next month, too.We're going in February, but I'm about ready to start a countdown now!</span><br />
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<a href="https://3.bp.blogspot.com/-t5AIuulH4f8/WAbkPhYX5ZI/AAAAAAAAgfQ/vrUeJVaMWNkTg79U5DAf67VvXpn_BowtQCLcB/s1600/2016-10-16%2B09.27.22.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-t5AIuulH4f8/WAbkPhYX5ZI/AAAAAAAAgfQ/vrUeJVaMWNkTg79U5DAf67VvXpn_BowtQCLcB/s320/2016-10-16%2B09.27.22.jpg" width="213" /></a></div>
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<a href="https://2.bp.blogspot.com/-D7_ytGqrvsE/WAbkQTqjEYI/AAAAAAAAgfU/XOmYB4J7q8QclDHKNfKr5mUSjPbwqYsrACLcB/s1600/2016-10-16%2B12.02.32.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="233" src="https://2.bp.blogspot.com/-D7_ytGqrvsE/WAbkQTqjEYI/AAAAAAAAgfU/XOmYB4J7q8QclDHKNfKr5mUSjPbwqYsrACLcB/s320/2016-10-16%2B12.02.32.jpg" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-HH2uw3VaNio/WAbkOTrYq9I/AAAAAAAAgfM/ntpHJvYi-NonWba7bQ2cEdDW7ISXrsmkACLcB/s1600/2016-10-16%2B13.53.20.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-HH2uw3VaNio/WAbkOTrYq9I/AAAAAAAAgfM/ntpHJvYi-NonWba7bQ2cEdDW7ISXrsmkACLcB/s320/2016-10-16%2B13.53.20.jpg" width="256" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">Mommy made the Minnie cake!</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">Six years later, we are so proud of this girl. She makes every day special, interesting, challenging and important. We are learning how to be better versions of ourselves for her; loving her brings out the best in us.</span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com18tag:blogger.com,1999:blog-906621410106004328.post-87103973699796719652015-10-15T21:26:00.004-07:002015-10-17T11:13:32.768-07:005<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Nearly 5 years ago, we sat together in a small clinic room
with a doctor and nurse practitioner. We
had left Scarlett, just a few days out of surgery, in the hospital with my
sister nervously watching her while we traveled down the Bay to see the doctors
at a separate hospital. We joked that it
was the closest to a “date” we had had together since she was born 3 months
earlier.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">We were there to learn about the chemotherapy regimen we
would be embarking on with Scarlett. The
first hurdle – removing the massive, deadly tumor from her brain in two 12-hour
surgeries – had been jumped. The next
stage was much longer, and much more mysterious to us.<o:p></o:p></span></div>
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<a href="https://2.bp.blogspot.com/-_kH7SxquMGo/TSN2bDsARBI/AAAAAAAAAXk/DzmGQrKNkWA/s1600/january%2B2010%2B040.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://2.bp.blogspot.com/-_kH7SxquMGo/TSN2bDsARBI/AAAAAAAAAXk/DzmGQrKNkWA/s320/january%2B2010%2B040.JPG" width="320" /></a></div>
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<span style="font-family: Verdana, sans-serif;">We listened carefully as the year-long process of killing
our baby’s cancer cells was explained to us.
She would need to be in the hospital for days, maybe weeks, at a
time. She would need an implanted port
catheter to allow chemo to be pumped into her body, as well as blood when she
needed it. She would need additional
medications to help protect her other organs from the poison. She was going to be very, very sick.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">We were obviously distressed. A box of tissues seemed to magically appear
in every one of these tiny rooms we had visited over the last few weeks, and I
put them to good use. We had planned the
start date, with another minor surgery, as soon as she was expected to be
released from the surgeon’s care at the other hospital; there was no time to
wait, process or deliberate.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">We needed to know – is this going to work? Are we going to put her through this torture
for no reason? If she is going to die
anyway, shouldn’t we just let her die peacefully? The doctor told us: Let’s look ahead to why
we are doing this. Let’s think about
what we might see when she is 5. She
might have some issues with her hearing, maybe her vision. She might struggle with balance. Math might be harder for her than other
kids. She will walk into kindergarten. She will go to school with other kids, and
she can be happy and learn.<o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-6lfEAPUc2Wg/TS4Bwnt34oI/AAAAAAAAAYE/e944luuVd7s/s1600/holding.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="http://2.bp.blogspot.com/-6lfEAPUc2Wg/TS4Bwnt34oI/AAAAAAAAAYE/e944luuVd7s/s320/holding.jpg" width="240" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">We hung on to that.
We have fought every single day for 5 years for that image. We have believed in her when no one was
sure. We have agreed to medicines,
surgeries, procedures, therapies and trials, all with the belief that if we
kept pushing, she could do exactly as he said so long ago.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">And today, she turns 5 years old. FIVE! And she has plenty to show them.<o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-kVVoDCK84P8/ViB4Yb9LOVI/AAAAAAAAcH4/u9aAjWBnVpU/s1600/2015-05-17%2B11.02.06.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="http://1.bp.blogspot.com/-kVVoDCK84P8/ViB4Yb9LOVI/AAAAAAAAcH4/u9aAjWBnVpU/s320/2015-05-17%2B11.02.06.jpg" width="180" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">She is not a baby anymore.
She is almost 40 pounds! She walks, or runs, everywhere, unless she
doesn’t feel like it (“HUG!” she demands.) She sings constantly (while I type
this, her song of choice is “Row, Row, Row Your Boat.” Other hits include “Twinkle, Twinkle Little
Star” and “Jingle Bells.” Every song ends with “Yea!!” and clapping.) She signs and says "I love you" all day long. She loves mermaids, graham crackers, baby
dolls, toy cars and the color purple.
She asks for foods she wants – yogurt (with a “spoon!”), grapes, apples,
bananas, watermelon and peas rate highly.
Everyone is her friend, and gets a hug, high 5 and fist bump, but no one
outranks her cousin Caleb…though she is fond of kissing her baby cousins, too!</span><br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-SpvzvePlGKY/ViBuF97hNiI/AAAAAAAAcHY/YJeY1W6UZD0/s1600/4%2Bkids.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://4.bp.blogspot.com/-SpvzvePlGKY/ViBuF97hNiI/AAAAAAAAcHY/YJeY1W6UZD0/s320/4%2Bkids.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Scarlett, Andrew, Olivia and Caleb</td></tr>
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</span></o:p></div>
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<span style="font-family: Verdana, sans-serif;">She speaks in single words most of the time, but with the
prompt of a sentence, she tells us “I.want.a.cracker.” She has mastered “NOPE,”
and it is usually her first response; however, if she’s excited, she says
“OOH!” and claps her hands over her head. <o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-W6wIfP6tLSs/ViB4hirllmI/AAAAAAAAcIg/7Tg0YRIsVi0/s1600/2015-08-24%2B06.57.00.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="http://2.bp.blogspot.com/-W6wIfP6tLSs/ViB4hirllmI/AAAAAAAAcIg/7Tg0YRIsVi0/s320/2015-08-24%2B06.57.00.jpg" width="200" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">First day of school 2015</span></td></tr>
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<span style="font-family: Verdana, sans-serif;">We’re working on potty training. It’s been a while, and it’s going to take a
while, but we’ve made progress and we’re pushing ahead. She can get clothes off (a favorite pastime
of hers!) and helps to put them on (not as exciting). She does not like having her hair brushed,
but does enjoy choosing the bows for her hair.
She insists on her jackets being fully zipped, and her shoes before
going outside (“SHOES!”) She can navigate her iPad about as quickly as I can,
and likes to listen to songs and do puzzles, and asks to wear her headphones
(which mommy and daddy appreciate!)<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">At her IEP last month, we solidified the goals for the next
year. She can currently count to 10 and
sing the alphabet; she will be working on identifying numbers of things and the
letters in her name. She knows colors,
animals (plus sounds – “MOO!”), and is working on shapes. In fact, when we tried to count the words she
knows, both spoken and signed, we lost count at about 150. We know she understands far more, like “Go
close the door,” “Where are your shoes?” and “Caleb is coming!” (which we only
say when he is in sight, or else she cries at the window until he appears!)<o:p></o:p></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-TKw619Qewv0/ViB4YfF5ZHI/AAAAAAAAcII/EfR4G3ctxjQ/s1600/2015-06-21%2B10.27.47-3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="180" src="http://1.bp.blogspot.com/-TKw619Qewv0/ViB4YfF5ZHI/AAAAAAAAcII/EfR4G3ctxjQ/s320/2015-06-21%2B10.27.47-3.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">With Caleb!</span></td></tr>
</tbody></table>
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<span style="font-family: Verdana, sans-serif;">We are phasing out some things…physical and occupational
therapy only once a month…MRIs only every 6 months…port removed last week…no
more surgeries!<o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-XbfiEeP3izg/ViB4hLCQdqI/AAAAAAAAcIY/Oz1IWMFrTik/s1600/2015-08-19%2B08.27.58.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="180" src="http://1.bp.blogspot.com/-XbfiEeP3izg/ViB4hLCQdqI/AAAAAAAAcIY/Oz1IWMFrTik/s320/2015-08-19%2B08.27.58.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Boo boo face!</span></td></tr>
</tbody></table>
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<span style="font-family: Verdana, sans-serif;">But that’s not to say everything is simple.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span style="font-family: Verdana, sans-serif;">There are many challenges ahead. We are fighting for an effective feeding
therapy that will allow her to eat without using the G-Tube. We are currently waiting for an official
denial, which we will protest, which will be denied again, which will then
allow us to apply for outside funding. <o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span style="font-family: Verdana, sans-serif;">She should be entering kindergarten next school year. We are very torn on how to handle this
transition. She is so much younger than
her age suggests; is she really going to ready for a school with bigger kids? We
do not know what school she will attend once she is finished with preschool –
there is no school program near us that sounds like a god fit. She is making progress now, thanks to the
intense level of support she is receiving. How do we leave that behind for a mystery?
Right now, our best plan is that she continues in preschool an additional year,
until she is nearly 7, since we know her needs are being met there. It would give her a year to grow and mature a
little more before unleashing her on a bigger school. Her IEP team (10+ of us!) will come together
a few more times over the coming months, tour possible programs, watch her progress,
and discuss our options as time goes on. After that, there are decisions to be
made, priorities to be decided.<o:p></o:p></span></div>
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</div>
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<a href="http://3.bp.blogspot.com/-BpVkBbpQ8WI/ViB4V-SCoyI/AAAAAAAAcH0/ZGJaYRPV_KY/s1600/2015-06-12%2B19.49.56.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="http://3.bp.blogspot.com/-BpVkBbpQ8WI/ViB4V-SCoyI/AAAAAAAAcH0/ZGJaYRPV_KY/s320/2015-06-12%2B19.49.56.jpg" width="273" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">We requested a behavioral evaluation. We are very concerned about some of her
behaviors, especially those that are dangerous (like walking into streets),
self-injurious (like biting her hand when she is frustrated, to the point of
calluses and broken skin) or painful to others (pinching, biting, smacking,
hair-pulling). She is constantly
searching for sensory input, whether it is loud noises, vibration, or tight
squeezes; this deep need for incoming sensation drives her and us to keep
looking for the next new feeling, and it never seems to completely satisfy her.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">She will also be evaluated for an Augmentative and Assistive
Communication (AAC) device. They will
test to see if some kind of picture communication system (either using a tablet
or just printed pictures) could help her express herself better. Since her receptive language (what she
understands) is much more extensive than her expressive language (what she uses,
both speech and sign), this type of device or system might give her a way to
communicate more. We were hesitant at
first – no more devices! – but see her frustration, and hope to find a way to
give her more ways to communicate.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span style="font-family: Verdana, sans-serif;">She is still small.
Her weight is about the 50<sup>th</sup> percentile for weight, but only
about the 10<sup>th</sup> percentile for height. We are backing down on calories to find some
balance. Her doctors are monitoring her height closely, as many kids who have
been through what she has take growth hormones. She lost 2 teeth over the summer! The big, new teeth in the front of her mouth
look out of place…and are pushing the other teeth in her still-tiny jaw out of
place, too. We’ve been referred to a
more specialized dentist.<o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-wDts4z-9T_8/ViB4asol2hI/AAAAAAAAcIU/HnFb2dCJXb0/s1600/2015-06-22%2B07.46.31.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="180" src="http://1.bp.blogspot.com/-wDts4z-9T_8/ViB4asol2hI/AAAAAAAAcIU/HnFb2dCJXb0/s320/2015-06-22%2B07.46.31.jpg" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">Chris and I are still trying to learn what normal life with
Scarlett means. I have moved to teaching first grade from
kindergarten. My heart was torn over
this decision, in part because the kindergarten students I would be teaching
are 5…and I would be face to face with Scarlett’s differences every day. I was afraid, anxious, and just overwhelmed
at that prospect, so instead of facing it with a brave face, I fled. It wasn’t the only reason, but it was a
piece. I am enjoying the change,
embracing the opportunity to push myself a little more. <o:p></o:p></span></div>
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<a href="http://3.bp.blogspot.com/-DgctnVCMqTs/ViB4Q1VyUBI/AAAAAAAAcHs/DQKWUTLC0IM/s1600/2015-05-01%2B15.53.22.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="180" src="http://3.bp.blogspot.com/-DgctnVCMqTs/ViB4Q1VyUBI/AAAAAAAAcHs/DQKWUTLC0IM/s320/2015-05-01%2B15.53.22.jpg" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">Chris is still the full-time manager for Scarlett. He drives her about 90 minutes to school each
morning, then hangs around the school (volunteering in classrooms, taking
classes with other parents, and even being hired to do some work in the
business office lately), then drives her home.
After the last several months of this strenuous schedule, we have a new
schedule in place that we hope will begin soon; it includes a few hours of her
school’s on-site day care 2 days each week, and a chauffeured (taxi) drive home
(compliments of the school district, which currently pays for our
mileage). This, in conjunction with 30
hours a month of respite care at home, help to give him some time to make phone
calls, go grocery shopping and just do something for himself each week. It’s an exciting prospect for us both!<o:p></o:p></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-l1PWHa_459Q/ViB6nd_MuZI/AAAAAAAAcJY/9Cn17gG7LEU/s1600/2015-07-23%2B11.03.49.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="180" src="http://1.bp.blogspot.com/-l1PWHa_459Q/ViB6nd_MuZI/AAAAAAAAcJY/9Cn17gG7LEU/s320/2015-07-23%2B11.03.49.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">On vacation in Maui</span></td></tr>
</tbody></table>
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<a href="http://4.bp.blogspot.com/-ivoH_-9rUdc/ViB6jlvOSuI/AAAAAAAAcJI/zVMJkBiLo_Q/s1600/2015-07-23%2B17.55.15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="283" src="http://4.bp.blogspot.com/-ivoH_-9rUdc/ViB6jlvOSuI/AAAAAAAAcJI/zVMJkBiLo_Q/s320/2015-07-23%2B17.55.15.jpg" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;"> We are still learning
the ins and outs of the “system” for special needs children. System seems like a joke, since there is very
little connection from one step to the next; there is no guide, no manual, and
very few experts to which we can refer.
We currently deal with:</span></div>
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</div>
<ul>
<li><span style="font-family: Verdana, sans-serif;"><span style="text-indent: -0.25in;">California Children’s Services (CCS) – medical
services for medically fragile children in California.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Scarlett is under the “full scope” coverage,
which means most medical appointments, procedures, medical therapies,
appliances (like orthotics and hearing aids) and medications are covered</span></span></li>
<li><span style="font-family: Verdana, sans-serif;"><span style="text-indent: -0.25in;">Medi-Cal: </span><span style="text-indent: -24px;">Chris receives pay via In Home Supportive Services (IHSS) to make it possible for him to stay home and care for Scarlett.</span><span style="text-indent: -24px;"> </span><span style="text-indent: -24px;">He gets paid for performing all of the needs that would otherwise require specialized care (dressing, diapering, tube feeding, food preparation, medical appointments, etc.)</span></span></li>
<li><span style="font-family: Verdana, sans-serif;"><span style="text-indent: -0.25in;">Regional Center of the East Bay (RCEB) –
County-based services for kids with special needs.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Currently provides diapers (and pull ups!),
30 hours/month respite, and soon a full time aide to allow Scarlett to
participate in the “regular” child care offered at her school.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">When CCS officially declines feeding therapy
twice, we can apply to have it covered by RCEB.</span></span></li>
<li><span style="font-family: Verdana, sans-serif;"><span style="text-indent: -0.25in;"><span style="font-size: 7pt; font-stretch: normal;"> </span></span><span style="text-indent: -0.25in;">School District – Provides out-of-district
preschool, including speech therapy, occupational therapy, physical therapy,
behaviorist, and transportation to school.</span></span></li>
</ul>
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<a href="http://4.bp.blogspot.com/-cHZSU75jMPY/ViB4hiE74yI/AAAAAAAAcIo/eqckjxjzPwM/s1600/2015-06-23%2B21.18.23.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="180" src="http://4.bp.blogspot.com/-cHZSU75jMPY/ViB4hiE74yI/AAAAAAAAcIo/eqckjxjzPwM/s320/2015-06-23%2B21.18.23.jpg" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span style="font-family: Verdana, sans-serif;">It’s a full time job to deal with the paperwork, phone calls
and appointments. For instance, Chris
has made follow up phone calls, e-mails and office visits for over 7 months
waiting for an approved document…and it has still not arrived. Every time we are told it is in the mail, it
doesn’t arrive. So we call again, wait
for a call back, clarify what is needed next, yet again, and wait, yet
again. If it is this difficult for us, I
wonder, what would it be like if we did not speak and read in English? What if we simply could not afford for him to
be home to make the endless phone calls?
As we have seen for nearly 5 years, the system in place is not
intuitive, and parents must often fend for themselves.<o:p></o:p></span></div>
<br />
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<span style="font-family: Verdana, sans-serif;">We chose to throw a birthday party instead of a blood drive
this year. Scarlett understands cake,
candles, and the Happy Birthday song, and so we wanted to give her a chance to
enjoy that. We don’t really have the
bandwidth for two big events, so party it was.
Last weekend, we surrounded ourselves with Bubble Guppies and friends.<o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-INiubI8-lBc/ViB7RlXNafI/AAAAAAAAcJ4/Qg1FvefD3iM/s1600/12107229_10103938345056763_8885936600467851850_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="http://1.bp.blogspot.com/-INiubI8-lBc/ViB7RlXNafI/AAAAAAAAcJ4/Qg1FvefD3iM/s320/12107229_10103938345056763_8885936600467851850_n.jpg" width="176" /></span></a></div>
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<a href="http://2.bp.blogspot.com/-UPl5y9q6eDo/ViB7Ru_JVMI/AAAAAAAAcJ8/N7uvoWFOAm0/s1600/12140595_10103938345505863_8449476027824691274_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="180" src="http://2.bp.blogspot.com/-UPl5y9q6eDo/ViB7Ru_JVMI/AAAAAAAAcJ8/N7uvoWFOAm0/s320/12140595_10103938345505863_8449476027824691274_n.jpg" width="320" /></span></a></div>
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<a href="http://2.bp.blogspot.com/-Nz3uJqh4F7c/ViB7RAdul2I/AAAAAAAAcJk/IXns5PEoNvg/s1600/12079054_10103938345695483_824099475015303758_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="180" src="http://2.bp.blogspot.com/-Nz3uJqh4F7c/ViB7RAdul2I/AAAAAAAAcJk/IXns5PEoNvg/s320/12079054_10103938345695483_824099475015303758_n.jpg" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">She had a blast.<o:p></o:p></span></div>
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<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">From here, we can only go up. We are watching, practicing and trialing to
learn how Scarlett learns. We are trying
to celebrate even the smallest triumphs, because some days, we need to distract
ourselves from the struggles we encounter.
We worry. We take turns being the
one to panic over simple things like fevers and upset tummies. We teach her jokes and tricks to make her
giggle. We try to appreciate her as she is, find joy in her now, rather than
focus on what to work on next…and sometimes we succeed.<o:p></o:p></span></div>
<br />
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<a href="http://4.bp.blogspot.com/-qOcfg-oIJcQ/ViB7Q03vSjI/AAAAAAAAcJc/qK2qQWJw2rA/s1600/12079284_10103945926488513_8759796719995320020_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="http://4.bp.blogspot.com/-qOcfg-oIJcQ/ViB7Q03vSjI/AAAAAAAAcJc/qK2qQWJw2rA/s320/12079284_10103945926488513_8759796719995320020_n.jpg" width="180" /></span></a></div>
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<a href="http://2.bp.blogspot.com/-GvMXAZT62_Q/ViB7RHXBcBI/AAAAAAAAcJg/cqrk6mj_hHM/s1600/12088503_10103945926423643_1729230821475798511_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="http://2.bp.blogspot.com/-GvMXAZT62_Q/ViB7RHXBcBI/AAAAAAAAcJg/cqrk6mj_hHM/s320/12088503_10103945926423643_1729230821475798511_n.jpg" width="180" /></span></a></div>
<span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: Verdana, sans-serif;">I wonder where we will be in 5 more years.</span><span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: Verdana, sans-serif;">As long and arduous as it has been, I look at
her and can’t believe this climbing, chatting little person is the frail baby I
held back then.</span><span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: Verdana, sans-serif;">She’s so different, so
strong.</span><span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: Verdana, sans-serif;">I’m different, too.</span><span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: Verdana, sans-serif;">We are taking the next steps together.</span><br />
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<o:p></o:p></div>
Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com17tag:blogger.com,1999:blog-906621410106004328.post-74248434621788575682015-04-11T09:31:00.001-07:002015-04-11T09:31:30.542-07:00Spring Break Update<span style="font-family: Verdana, sans-serif;">It's the end of our Spring Break, heading into the home-stretch of the school year and some crazy weeks around the house, so I though I would try to sneak in an update.</span><br />
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<a href="http://2.bp.blogspot.com/-EDMvGoC6dsQ/VSlBFFtGU2I/AAAAAAAAbB8/WbnY2nzeRx4/s1600/2015-03-21%2B14.08.34.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" src="http://2.bp.blogspot.com/-EDMvGoC6dsQ/VSlBFFtGU2I/AAAAAAAAbB8/WbnY2nzeRx4/s1600/2015-03-21%2B14.08.34.jpg" height="180" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">First, Scarlett is doing amazingly. She is EVERYWHERE - running, climbing on everything, up and down stairs, and just about as mobile as she can be. She is still wearing a brace on her left foot to help support it, but even that is making good progress (her ankle is no longer rolling in). She is FAST, and gets away from us if we're not watching. We had our first real stroller-free family fun outing to the <a href="http://www.baykidsmuseum.org/" target="_blank">Bay Area Children's Discovery Museum</a> yesterday - Scarlett walked herself everywhere, and asked for a "huuuug" when she needed a break.</span><br />
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<a href="http://1.bp.blogspot.com/-Rhe9U_Kf4KI/VSlBU3dwbdI/AAAAAAAAbCg/yXYrcdAn42Q/s1600/2015-04-05%2B10.12.07.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" src="http://1.bp.blogspot.com/-Rhe9U_Kf4KI/VSlBU3dwbdI/AAAAAAAAbCg/yXYrcdAn42Q/s1600/2015-04-05%2B10.12.07.jpg" height="180" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">She is eating better. She suddenly decided she likes yogurt, so she can eat an entire 6 oz yogurt cup now, and it is starting to carry over to other purees like baby food. We have been using the pouches of baby food to feed her by tube for years, so now to be able to feed her at least some by mouth is great. It's challenging to be feeding a 4.5 year old in the same manner that you would feed a 1 year old - adult holding the spoon to keep her from throwing it everywhere, tiny bite-size pieces of finger foods, bibs, walls splattered with food...but we're making progress, and that's what we try to focus on. We are waiting to hear on a feeding clinic we hope to work with - they have a good track record with G-Tube fed kids, and will work with her at home and school intensively rather than a weekly clinic or missing school for other intensive clinics. The only hang-up is the months-long approval process that any kind of private therapy takes to get coverage.</span><br />
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<a href="http://2.bp.blogspot.com/-wsf_2yU5rU4/VSlBFYQBqlI/AAAAAAAAbCE/wzegvh538Ao/s1600/2015-03-28%2B10.07.37.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" src="http://2.bp.blogspot.com/-wsf_2yU5rU4/VSlBFYQBqlI/AAAAAAAAbCE/wzegvh538Ao/s1600/2015-03-28%2B10.07.37.jpg" height="180" width="320" /></span></a></div>
<span style="font-family: Verdana, sans-serif;">She LOVES school. She always has, but she is really able to show it now. She is learning a lot - she knows several colors, sings several songs, can count to 10, names many animals, body parts, and familiar things. Something things she uses her voice - counting, singing, saying "Hello!" - and other things she signs - for help, to turn on lights, for foods. Her school focuses on using both, and it seems to be working for her. We feel like we are on he cusp of a big language growth spurt, as we are starting to understand her much more often, and she is beginning to understand the benefits of using words and signs to communicate - she gets what she wants when she tells us what it is!</span><br />
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<a href="http://3.bp.blogspot.com/-OCVigWYSHV4/VSlBXENsn_I/AAAAAAAAbCo/B7ZK1OJMg4w/s1600/2015-04-10%2B14.00.20.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" src="http://3.bp.blogspot.com/-OCVigWYSHV4/VSlBXENsn_I/AAAAAAAAbCo/B7ZK1OJMg4w/s1600/2015-04-10%2B14.00.20.jpg" height="180" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">She's still waiting for surgery. We scheduled it 6 times - SIX! It's been almost a year since she was first scheduled to have it, and she has somehow wormed her way out of every single time. Now, things are wild again, so we think that we will probably just wait until summer again. We're waiting for a call back from the neurosurgeon's office to attempt another one...we'll see how that goes.</span><br />
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<span style="font-family: Verdana, sans-serif;">The wildness...things have gotten a little crazy in the last few weeks. First, the new baby cousins arrived! Olivia and Andrew were born on March 29. They were a few weeks early, so pretty teeny still - 5 lb 4 oz and 4 lb 14 oz - but are doing well and were all home by Easter. Scarlett isn't really too interested in them, other than to give a wave and a kiss and then get back to playing. She's a good distraction for her cousin Caleb, who is adjusting to big brother life. I'm getting my baby snuggles as much as I can!!</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">New baby cousins Andrew Douglas and Olivia Michelle</span></td></tr>
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<span style="font-family: Verdana, sans-serif;">Then, we found out we have to move. We have lived in our house for a little over a year, and just signed the new lease in February. Then...the owner passed away. We always knew that if she were to pass away, her family would have to sell the house. When we signed the lease, it seemed all was fine, and then it very quickly wasn't. Since the lease was signed, we had until it ended next January to find a new place and move, so we weren't in a rush. Then, a coworker suddenly had their renter give notice and needed to find someone new... BAM! Now we're moving in a few weeks. The rental market is tight here, and expensive, so it's a gift to not have to search and to be able to save a little every month on the new place.</span><br />
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<span style="font-family: Verdana, sans-serif;">Before the move came about, Chris took on some new roles, too. Several months ago, he was asked to join the local special needs family resource network as a parent advocate. He did a training over several weekends, and then was asked to attend a summit in Sacramento to address some legislators about big changes coming to medical coverage for kids with special needs in California. From his contributions there, he was asked to participate in two work groups that are building the legislation for the new programs that will provide medical coverage for complex kids like Scarlett. He is the only parent on one of the committees, working with medical professionals, hospital administrators, legislators and others to shape who will qualify for what kids of care, and how kids as complicated as Scarlett (and those with more) will have the continuous coverage and services they need. He really hopes to bring some fluidity of care to families who are not able to navigate the system as we have fought to do for the last 4.5 years.</span><br />
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<a href="http://4.bp.blogspot.com/--uvAGTrxgqY/VSlBSlUtGWI/AAAAAAAAbCY/flQtFYzaCnA/s1600/2015-04-10%2B13.58.53.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" src="http://4.bp.blogspot.com/--uvAGTrxgqY/VSlBSlUtGWI/AAAAAAAAbCY/flQtFYzaCnA/s1600/2015-04-10%2B13.58.53.jpg" height="180" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">That's not to say he has it all figured out - he spends the majority of his days trying to manage the things we already have in place. Most recently, he has battled in home supportive services (IHSS) for an adequate number of hours. This program pays him to care for Scarlett in place of a hospital or professional facility - basically makes it possible for us to have a full-time parent to care for her. He fought to have them more accurately assess Scarlett's daily needs to modify the hours he is paid for - things like diapering, mobility, feeding, food preparation, dressing, appointments. She qualifies for things that are outside of "typical" age - like diapering, since she is 4.5, as well as things that would have to be done by a trained medical provider - like tube feeding. It's been an uphill battle of documentation, interviews and follow up with in person, since the phone system has been non-functioning for 3+ months. It's in the final approval stage, so it's looking like a win!</span><br />
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<span style="font-family: Verdana, sans-serif;">In addition, he has been nominated as Volunteer of the Year in our city for his work in my school's garden. He didn't win his bid for school board, but that didn't stop him from pursuing his pet project of the garden, as well as signing up for the area special education oversight committee.</span><br />
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<span style="font-family: Verdana, sans-serif;">The days are full of the good kind of busy. Hopefully the summer will bring some vacation, because we are going to need it!</span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com3tag:blogger.com,1999:blog-906621410106004328.post-20931183963515477042015-02-12T19:09:00.003-08:002015-02-12T19:09:46.182-08:00Surgery tomorrow? Nope.<span style="font-family: Verdana, sans-serif;">Scarlett has successfully avoided this surgery 5 times now. Once in June, when she suddenly started having hundreds of seizures a day, and then abruptly stopped (and hasn't had a single one since). Twice in December, first for an emergency and then for a cough that developed the morning of the surgery. </span><br />
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<span style="font-family: Verdana, sans-serif;">Last week, Chris arrived for the scheduled pre-op appointment to be told "There's no surgery scheduled for this week." After some high-tension phone calls, we were told that somewhere along the line, the message was crossed, and there was never a surgery scheduled for February 6. Chris solidly remembers the conversation where it was scheduled, but that doesn't change what was on the surgeon's schedule. In their minds, it was always scheduled to be the 13th.</span><br />
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<span style="font-family: Verdana, sans-serif;">So, this week we were ready, yet again. And...bam. Runny nose. Coughing when laying down. Waking in the night. We called Wednesday to check in, not wanting to go to the lengths we did before only to be turned away after putting on her surgical gown. Surgery checked with anesthesia, and they shut it down. So, no surgery yet again. We'll try again next month.</span><br />
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<span style="font-family: Verdana, sans-serif;">We're going to enjoy our Valentine's Day at home, gardening and working on projects for the new baby cousins!!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">"Hello, Doctor. I won't be coming in for that surgery you keep telling my parents I need. Maybe next time!" </td></tr>
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<span style="font-family: Verdana, sans-serif;"><br /></span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com4tag:blogger.com,1999:blog-906621410106004328.post-56769018212324934022015-02-06T07:00:00.001-08:002015-02-06T07:00:02.411-08:00Scratch that...Next week<span style="font-family: Verdana, sans-serif;">Don't have time for much, but the bottom line is that surgery is now next Friday. Apparently what we heard as "February 6" was actually "February 13"...not sure how that happens. I think we would have connected that we scheduled a surgery on Friday the 13th...and the day before Valentine's day, which is a long-running theme in Scarlett's life. Anyway, one more week of freedom for the little one.</span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com2tag:blogger.com,1999:blog-906621410106004328.post-44045420507604136512015-02-02T22:10:00.005-08:002015-02-02T22:10:50.735-08:00The Surgery that Wasn't (But Will Be)<span style="font-family: Verdana, sans-serif;">You probably think we fell off the face of the earth. We didn't.</span><br />
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<span style="font-family: Verdana, sans-serif;">I'm sorry! I was so burned out after the surgery planning...and then the day came.</span></div>
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<span style="font-family: Verdana, sans-serif;">It was scheduled for a Tuesday. We had worked really hard to plan out all the details - all of Scarlett's classes, therapies and appointments had been rescheduled; I had 4 days of lesson plans for my class, including their field trip and holiday party; we were ready.</span></div>
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<span style="font-family: Verdana, sans-serif;">Which, really, should have been my first clue that things were bound to derail.</span></div>
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<span style="font-family: Verdana, sans-serif;">The neurosurgeon's office called Monday afternoon to tell us they had an emergency case that would delay Scarlett to Friday. It was frustrating, but we understood - we have been that emergency case more than once. I talked to my boss, and together we agreed I should just take the scheduled time off since I had already done all the planning and the students and parents were already prepared.</span></div>
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<span style="font-family: Verdana, sans-serif;">Instead of work or sit in the hospital, I spent a few glorious days just relaxing - taking Scarlett to school, finishing shopping and wrapping gifts, and planning for holiday cooking.</span></div>
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<span style="font-family: Verdana, sans-serif;">On Wednesday, she went to the pre-op appointment, and was cleared for take-off. On Thursday, they called to confirm times and that she was still well. We made sure to make a last minute stop at Santa's workshop, then did the pre-surgical bath, packed our bags, read our books about the doctors and hospitals once more, and set our alarms for the early morning trip to the hospital.</span></div>
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<tr><td class="tr-caption" style="text-align: center;">I am pretty convinced that she wish for a no surgery Christmas from Santa...how could he have resisted?</td></tr>
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<span style="font-family: Verdana, sans-serif;">Then came Friday at 5:00am. We were all groggy and anxious. We started driving, and then we heard the dreaded sound from the back seat - COUGH. COUGH. COUGH COUGH COUGH.</span></div>
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<span style="font-family: Verdana, sans-serif;">We checked in, but the first nurse who heard her through the curtain shut it all down. She called all the doctors and OR and told them all she was sick. She didn't both to tell us she was refusing to allow her to go through for a solid hour into waiting - after we had done all the pre-surgical checks, changed her into a gown and even had an anesthesia resident okay her (I made a stink about that!!) In the end, they didn't feel it was worth the increased risk of pneumonia or infection for an "optional" (not emergency) surgery.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">She sure didn't LOOK sick.</td></tr>
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<span style="font-family: Verdana, sans-serif;"><span style="font-family: Verdana, sans-serif;">After that, we were in a funk. We had been so revved up, it was hard to come down without the desired result. I felt like I cheated my class, did a ton of extra work and was just going to have to do it all over again. The next few days were grumpy, even though it really just meant that we would get to be home and enjoy the days before Christmas without pain medication. </span></span></div>
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<span style="font-family: Verdana, sans-serif;">In fact, Scarlett and I both ended up pretty sick by that point. Coughing, fever, all the delightful things that would have made her SO sick had they gone through with the surgery (I recognize this in hindsight, of course...)</span></div>
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<span style="font-family: Verdana, sans-serif;">So, then came Christmas (with me sick), New Years (with Chris sick), school starting back up and...well, here we are in February.</span></div>
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<span style="font-family: Verdana, sans-serif;">The good news is that we finally got her surgery rescheduled for this weekend. She is SCHEDULED to go in Friday morning and get this whole thing over with. It's a 3 day weekend for me, so that helps ease the workload; Scarlett should only miss a few days of school. We'll see...I know better than to try to plan too closely this time!</span></div>
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<tr><td class="tr-caption" style="text-align: center;">Christmas Eve with her best bud and cousin Caleb</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-qP-K71BTli0/VNBbKIYqDaI/AAAAAAAAamQ/mjZyBAjHaDc/s1600/2014-12-25%2B11.41.14.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-qP-K71BTli0/VNBbKIYqDaI/AAAAAAAAamQ/mjZyBAjHaDc/s1600/2014-12-25%2B11.41.14.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Spoiled rotten by Santa, mommy, daddy, grandparents, great grandma and aunties and uncles.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Helping Peter Pan walk</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Jackpot!</td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-YwFXmMtVN0k/VNBbMKyMH5I/AAAAAAAAamY/DfNGDPluXkY/s1600/2014-12-25%2B12.13.37.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-YwFXmMtVN0k/VNBbMKyMH5I/AAAAAAAAamY/DfNGDPluXkY/s1600/2014-12-25%2B12.13.37.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Testing out her new sleeping bag - she napped in it for days afterward.</td></tr>
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<a href="http://1.bp.blogspot.com/-yQZWnjlcs2M/VNBbVuw1ASI/AAAAAAAAamg/fPGfA-O_LWA/s1600/2014-12-25%2B13.53.32.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-yQZWnjlcs2M/VNBbVuw1ASI/AAAAAAAAamg/fPGfA-O_LWA/s1600/2014-12-25%2B13.53.32.jpg" height="213" width="320" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Test-driving her new wheels with her favorite co-pilots</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Loving Elsa at her friend's birthday party</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Last weekend...all the adults are tired of pulling the wagon, but the riders are waiting...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">"Helping" mommy build the baby swing for the new baby cousins</td></tr>
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Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com5tag:blogger.com,1999:blog-906621410106004328.post-28146170176956314512014-12-11T20:10:00.002-08:002014-12-11T20:10:12.935-08:00Surgery #15For the last 3 years, we have been working on fixing Scarlett's skull. It's finally time for the last step!<br />
<br />School was canceled today due to stormy weather (the first time I have ever heard of that around here). I got to go with Chris and Scarlett to both appointments - neurosurgery in Walnut Creek and neuro-oncology in Palo Alto. Unfortunately they landed on the same day, and there was no way to reschedule. We drove a lot, in sheets of rain, with lake-sized puddles on the freeways, but we made it to both appointments.<br />
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First and foremost, the neuro-onc appointment confirmed what we have waited two weeks to hear - her MRI is clean, no signs of tumor! Hooray! The rest was a lot of catching up, us sharing all the great things Scarlett is doing, blah blah blah.<br />
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With the neurosurgeon, we discussed his plan for surgery. A little history...<br />
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At 6 months old, Scarlett's first shunt failed. It was removed and replaced with a new one...the wrong one. The wrong shunt (a non-programmable type) over-drained and, since her skull was still healing after the tumor was removed from below it, it collapsed. She was in no pain, but too sick from chemo to undergo the surgery to repair it.<br />
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<br /><br />After chemo ended and she was safe for surgery, we had the first cranioplasty. At that point, her skull looked like this:<br />
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At about 18 months old, she had surgery to reset some of the bones in her skull to allow them to heal and grow correctly. Her head was relatively round, a fact her neurosurgeon is very proud of. <br />
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Then came the relapse. More tumor, more surgery to remove it, more chemo. During that time, the bone as not able to heal correctly, so it started to collapse again. It is not as serious a it was, but needs to be repaired. This was scheduled for June, when we were all out of school...until the explosions of seizures the week before.<br />
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We all decided that we needed to know where the seizures were going before we decided to go in for surgery - it was a possibility that she would need some type of surgery for the seizures, and we did not want to do anything twice, or that would put the new skull into jeopardy. So...we waited.<br />
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Now, it's another school break. Scarlett and I are both taking the last 4 days before the holiday break to have surgery. On Tuesday, December 16, she will go in for her 15th surgery (1 biopsy, 2 resections, port, a bunch of shunts and repairs to shunts, g tube, first cranioplasty, another shunt, another resection, another port). The surgeon is hoping to be able to use her own cranial bone to create some new bone (some sort of splitting and mesh-making...I don't really get it). He is not sure that her bone is thick enough to be used in this way. If it is not, then he will use a bone paste to create a new layer over the current hole. Either way will allow her skull to grow more normally, and be safer when she falls. <br />
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He is very optimistic that she will be out in two days...I think we will be happy to be home by the weekend (when he leaves for vacation!) From our previous experience, Scarlett will have some major swelling and need heavy duty pain medication for a few days. This was difficult with a one year old the last time around...now she's 4. She can walk, climb and fight against us (and the nurses). She is starting to have some fear of doctors offices and medical procedures (like blood pressure cuffs) that were previously not a problem for her - which is normal and typical for a preschooler. It's going to be difficult for her and us.<br />
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The good news is that, since this is the last surgical procedure we expect her to need - maybe ever? - she will have her port removed in February. We already made the appointment, so it's on the books! She has had a port for all but about 6 months of her 4 years - she is ready to have it out of her chest! Once that is done, we will only have MRIs and regular-kid maintenance, along with check-ups. No more huge surgeries looming over us for years at a time. Hooray!!<br />
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The reward for all this hard work is Christmas! We will get out of the hospital and it will be time to finish (start??) wrapping gifts and baking. Every year, Christmas seems to be the time when everything comes down on us...this year, at least it is planned and expected.<br />
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Our decorations are up, most of the gifts purchased, and plans for family fun in the days around Christmas are planned. We just have this one little thing to get out of the way first.<br />
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Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com4tag:blogger.com,1999:blog-906621410106004328.post-13662209444933065152014-10-20T19:56:00.000-07:002014-10-20T19:56:38.717-07:00One Two Three FOUR<span style="font-family: Verdana,sans-serif;">Last week, Scarlett turned FOUR!</span><br />
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<span style="font-family: Verdana,sans-serif;">Can you believe it? If you're still reading my sporadic updates, you've probably been around a while, and, like me, are completely floored that we are already at 4 years old.</span><br />
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<span style="font-family: Verdana,sans-serif;">This was the first time we felt like she would appreciate at least some part of it being her birthday. She loves the "Happy Birthday" song, balloons and cake, so what more did she need?</span></div>
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<span style="font-family: Verdana,sans-serif;">She woke up to a room and bed filled with balloons... </span></div>
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<span style="font-family: Verdana,sans-serif;">At school, her friends presented her with handmade cards. She also walked around a candle to represent her 4 trips around the sun, and shared pictures of her throughout her life. </span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-JIcGtXJ4dgQ/VEWpE1qLGzI/AAAAAAAAahQ/KXTWLzDpHB0/s1600/2014-10-16%2B11.52.23.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-JIcGtXJ4dgQ/VEWpE1qLGzI/AAAAAAAAahQ/KXTWLzDpHB0/s1600/2014-10-16%2B11.52.23.jpg" height="240" width="320" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;">That afternoon, her cousin came to play while we put together her birthday present: a new trampoline! We have been fighting to get her to stop jumping on the couches and beds, and thought a sanctioned, safer jumping space would help. Then we saw <a href="http://www.amazon.com/Skywalker-Trampolines-Seaside-Adventure-Enclosure/dp/B0064G8PZG/ref=sr_1_5?ie=UTF8&qid=1413855136&sr=8-5&keywords=children%27s+trampoline" target="_blank">this one on Amazon</a> and we thought it would work well - and it does!</span></div>
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<span style="font-family: Verdana,sans-serif;"> She can jump to her heart's content in there and I won't worry as much as I do when she's on the couch.</span></div>
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<span style="font-family: Verdana,sans-serif;">We wrapped it up with more cake - she blew out her candles (with minor help) and dug in!</span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-FiOlCwkUFeM/VEWm5FJzlsI/AAAAAAAAaf8/T-QmVcQgnpE/s1600/IMG_9170.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-FiOlCwkUFeM/VEWm5FJzlsI/AAAAAAAAaf8/T-QmVcQgnpE/s1600/IMG_9170.JPG" height="213" width="320" /> </a></span></div>
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<span style="font-family: Verdana,sans-serif;">4 year old Scarlett is a delightful handful. She is full of energy, and we jsut always hope she will use her powers for good rather than tantrums. She loves school and her cousin Caleb. She carries on full conversations in her own babble-speak, but also knows enough words to communicate exactly what (or who) she wants much of the time. Her favorite word is probably "no"; my favorite of her words is "flower", which she pronounces "wow-ah". She signs as much as she speaks, and when she puts the two together, we understand her best. She is getting better at just imitating what she sees or hears, so we hear more from her. She likes to count and sing.</span></div>
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<span style="font-family: Verdana,sans-serif;">She's a daredevil. She climbs on everything, and wants to go as fast as she can. If we turn our backs, it is not uncommon to find her standing on the kitchen table after climbing up the chairs, or hanging upside down on the bed looking at herself in the mirror. She has favorites - food (cookies and cake); toys (babies and animals); clothes (pink dresses...sigh.); people (Daddy and Caleb); places (school); shows (Signing Time and <a href="https://www.youtube.com/user/SuperSimpleSongs" target="_blank">Super Simple Songs</a>); books (The Hungry Caterpillar, in which she pretends to eat every food with a little "nom nom nom" as we read). She likes to be given a choice in what she wears or eats, which is just more of that 4 year old personality coming through. If she agrees, it goes smoothly; if it is not her idea, we have a battle ahead. Most of the time, she is quite the charmer. She smiles, giggles and tickles everyone she meets (even though it sometimes feels like pinching) and loves to hold hands while she walks.</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Her best buds.</span></td></tr>
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<span style="font-family: Verdana,sans-serif;"> This girl amazes us day in and day out. She surprises her specialists and therapists every time they see her, and those who have been with us since the beginning take as much joy in her as we do. We are proud and just plain happy to have her around.</span></div>
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<span style="font-family: Verdana,sans-serif;">Here's to a year of more firsts.</span></div>
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<span style="font-family: Verdana,sans-serif;">A few more pictures from the last few weeks...</span></div>
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<span style="font-family: Verdana,sans-serif;">At our alma mater high school's cancer awareness game.</span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://1.bp.blogspot.com/-VrazNtTQjiI/VEWpFiBdWMI/AAAAAAAAahc/-qaSXFRlUs0/s1600/2014-10-17%2B18.36.16.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-VrazNtTQjiI/VEWpFiBdWMI/AAAAAAAAahc/-qaSXFRlUs0/s1600/2014-10-17%2B18.36.16.jpg" height="320" width="240" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://1.bp.blogspot.com/-jNrXKS8_1g0/VEWpHlqzWyI/AAAAAAAAaho/XUA3n2d5S2Q/s1600/2014-10-17%2B18.36.31.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-jNrXKS8_1g0/VEWpHlqzWyI/AAAAAAAAaho/XUA3n2d5S2Q/s1600/2014-10-17%2B18.36.31.jpg" height="240" width="320" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"> Our fourth blood drive was smaller, but we still collected about 40 units of blood. </span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-DZEwqJ8QGH4/VEWpHhM_b5I/AAAAAAAAahk/Xk8EapfxGOo/s1600/2014-10-18%2B09.45.07-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-DZEwqJ8QGH4/VEWpHhM_b5I/AAAAAAAAahk/Xk8EapfxGOo/s1600/2014-10-18%2B09.45.07-2.jpg" height="320" width="240" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-kmHVNXUFNdc/VEWpIDOu_tI/AAAAAAAAahw/YeZDi1YrU-E/s1600/2014-10-18%2B11.31.43.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-kmHVNXUFNdc/VEWpIDOu_tI/AAAAAAAAahw/YeZDi1YrU-E/s1600/2014-10-18%2B11.31.43.jpg" height="240" width="320" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"> Pumpkin patch with the family...which is growing by TWO come Spring when Caleb becomes a big brother to twins!</span></div>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-0gNkAF7m3sk/VEWnykJOUuI/AAAAAAAAagU/6OZ6ts1SgjE/s1600/IMG_9016.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-0gNkAF7m3sk/VEWnykJOUuI/AAAAAAAAagU/6OZ6ts1SgjE/s1600/IMG_9016.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Walking in with GG</span></td></tr>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-EPDjRW_fYpY/VEWnyeGeg2I/AAAAAAAAagQ/Z6jefgByxm8/s1600/IMG_9022.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-EPDjRW_fYpY/VEWnyeGeg2I/AAAAAAAAagQ/Z6jefgByxm8/s1600/IMG_9022.JPG" height="213" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Those sassy hands on hips...watch out!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-CJoqoQ6dAa4/VEWnu8jYX7I/AAAAAAAAagI/Esvs8W2YYO0/s1600/IMG_9076.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-CJoqoQ6dAa4/VEWnu8jYX7I/AAAAAAAAagI/Esvs8W2YYO0/s1600/IMG_9076.JPG" height="320" width="213" /></a></span></div>
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<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F2.bp.blogspot.com%2F-9a-_WtAVKa8%2FVEWm2jKhjoI%2FAAAAAAAAafs%2Fj_FZ5LjgjGg%2Fs1600%2FIMG_9162.JPG&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://2.bp.blogspot.com/-9a-_WtAVKa8/VEWm2jKhjoI/AAAAAAAAafs/j_FZ5LjgjGg/s1600/IMG_9162.JPG" -->Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com13tag:blogger.com,1999:blog-906621410106004328.post-22748330971085987752014-08-25T20:51:00.002-07:002014-08-25T20:51:53.695-07:00Flower Girl<span style="font-family: Verdana,sans-serif;">Here is Scarlett's flower girl debut!
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-0z6ySopGDzo/U_wA4eqFC2I/AAAAAAAAaX4/ForWRpR6Qxo/s1600/IMG_1181.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-0z6ySopGDzo/U_wA4eqFC2I/AAAAAAAAaX4/ForWRpR6Qxo/s1600/IMG_1181.JPG" height="320" width="213" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">At the rehearsal</span></td></tr>
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<span style="font-family: Verdana,sans-serif;"><a href="http://1.bp.blogspot.com/-PA1N8Iv0uWY/U_wA4hDQJjI/AAAAAAAAaX8/Zw4k9CiJZiA/s1600/IMG_1214.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-PA1N8Iv0uWY/U_wA4hDQJjI/AAAAAAAAaX8/Zw4k9CiJZiA/s1600/IMG_1214.JPG" height="320" width="213" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://3.bp.blogspot.com/-7G3Xt9dlQhg/U_wA3UF18PI/AAAAAAAAaX0/DVDu1YiUfLU/s1600/IMG_1341.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-7G3Xt9dlQhg/U_wA3UF18PI/AAAAAAAAaX0/DVDu1YiUfLU/s1600/IMG_1341.JPG" height="320" width="213" /></a></span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://3.bp.blogspot.com/-7cm0Yf6UBDs/U_wDkC86Z-I/AAAAAAAAaao/2_-iVfob3JQ/s1600/IMG_1533-001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-7cm0Yf6UBDs/U_wDkC86Z-I/AAAAAAAAaao/2_-iVfob3JQ/s1600/IMG_1533-001.JPG" height="320" width="212" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">All glammed up!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;"><a href="http://1.bp.blogspot.com/-NM91rtXLLn0/U_wA91xbc5I/AAAAAAAAaYU/O2EauXS4UGU/s1600/IMG_1556.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-NM91rtXLLn0/U_wA91xbc5I/AAAAAAAAaYU/O2EauXS4UGU/s1600/IMG_1556.JPG" height="320" width="213" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-ZqEjI4copw0/U_wA_OV-EKI/AAAAAAAAaYY/Wdnm9LzQwcg/s1600/IMG_1565.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-ZqEjI4copw0/U_wA_OV-EKI/AAAAAAAAaYY/Wdnm9LzQwcg/s1600/IMG_1565.JPG" height="320" width="213" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-PdePwuGsThw/U_wBAxsmZII/AAAAAAAAaYk/7yD4cjvhpmY/s1600/IMG_1577.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-PdePwuGsThw/U_wBAxsmZII/AAAAAAAAaYk/7yD4cjvhpmY/s1600/IMG_1577.JPG" height="320" width="213" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://3.bp.blogspot.com/-Q9qjoUGA8bY/U_wBCdPvjjI/AAAAAAAAaYs/_UowQRQ_6sM/s1600/IMG_1583.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-Q9qjoUGA8bY/U_wBCdPvjjI/AAAAAAAAaYs/_UowQRQ_6sM/s1600/IMG_1583.JPG" height="320" width="212" /></a></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">With papa</span></td></tr>
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<span style="font-family: Verdana,sans-serif;"><a href="http://1.bp.blogspot.com/-CGtn4lEL7p4/U_wBH_5EE6I/AAAAAAAAaY8/ITdIbbIkWgQ/s1600/IMG_1593.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-CGtn4lEL7p4/U_wBH_5EE6I/AAAAAAAAaY8/ITdIbbIkWgQ/s1600/IMG_1593.JPG" height="320" width="213" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-E9Z8cSqOHO0/U_wBKAj4fKI/AAAAAAAAaZE/JyUf6UUsWYM/s1600/IMG_1596.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-E9Z8cSqOHO0/U_wBKAj4fKI/AAAAAAAAaZE/JyUf6UUsWYM/s1600/IMG_1596.JPG" height="320" width="213" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-eKucOYMF-qY/U_wBMqJZ-7I/AAAAAAAAaZM/38-qJPxOJBQ/s1600/IMG_1655.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-eKucOYMF-qY/U_wBMqJZ-7I/AAAAAAAAaZM/38-qJPxOJBQ/s1600/IMG_1655.JPG" height="275" width="320" /></a></span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-AsjKfS2Uts0/U_wBOdS3lVI/AAAAAAAAaZU/h7wOZFwPsIc/s1600/IMG_1666.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-AsjKfS2Uts0/U_wBOdS3lVI/AAAAAAAAaZU/h7wOZFwPsIc/s1600/IMG_1666.JPG" height="213" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">With Best Man Daddy</span></td></tr>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-lsGNwb3vK70/U_wBXE12a0I/AAAAAAAAaZw/br2x8so09TA/s1600/IMG_1762.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-lsGNwb3vK70/U_wBXE12a0I/AAAAAAAAaZw/br2x8so09TA/s1600/IMG_1762.JPG" height="320" width="213" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Uncle Danny and Auntie Allie</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Up bright and early the next morning for the first day of school!</span></td></tr>
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<br />Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com8tag:blogger.com,1999:blog-906621410106004328.post-47604977985223834472014-08-20T22:23:00.002-07:002014-08-20T22:23:45.850-07:00Summer<span style="font-family: Verdana,sans-serif;">It's been a long time since I've had a chance to write. I've gotten several messages asking how she is doing. Thankfully, we've been busy in all the good ways. I went through the pictures from the last few month to see what has not made its way here...we'll have to back up a bit.</span><br />
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<span style="font-family: Verdana,sans-serif;">For Mother's Day, we all went to Reno to visit my great grandma, Scarlett's great-great-grandma. </span><br />
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<span style="font-family: Verdana,sans-serif;">We have spent the majority of the summer chasing her - she's everywhere! This is her using a laundry basket as a stool, as the new stool we bought sits a few feet away. </span><br />
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<span style="font-family: Verdana,sans-serif;"><a href="http://3.bp.blogspot.com/-9sROUNMSV0A/U-w5K8FqRXI/AAAAAAAAaUc/DqslPIDBZYk/s1600/2014-05-26%2B13.25.30.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-9sROUNMSV0A/U-w5K8FqRXI/AAAAAAAAaUc/DqslPIDBZYk/s1600/2014-05-26%2B13.25.30.jpg" height="240" width="320" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;">We got a call one day from another brain tumor momma whom we met at camp. Her daughter Audrey had recently gotten a play house from the <a href="http://www.habitatebsv.org/cwp/playhouse-program" target="_blank">Habitat for Humanity Play House Project</a>. They were looking for another little one to give a house to...and we were available! A team from Samsung, as part of their team-building exercise, had two houses ready to go and no kids to give them to. We were on it! That evening, we watched as they finished painting, constructed and modified an adorable play house for Scarlett.</span><br />
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://1.bp.blogspot.com/-884IdTA-xQA/U-w5NJ0CJTI/AAAAAAAAaUo/mW9G6s9Hd70/s1600/2014-05-28%2B16.17.23.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-884IdTA-xQA/U-w5NJ0CJTI/AAAAAAAAaUo/mW9G6s9Hd70/s1600/2014-05-28%2B16.17.23.jpg" height="213" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Adding her handprint</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Checking out her new digs. They made Scarlett's house wheelchair accessible - not knowing that she wouldn't need that - which allows her to ride her bikes through without slowing down!</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Now it is pretty much her favorite hang-out spot.</span></td></tr>
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<span style="font-family: Verdana,sans-serif;"> She is a big fan of purses. Her favorite is a retired Seatbelt Bag of mine; she prefers it empty, despite how many times I have showed her that things can go inside. She swings it over her shoulder and takes off. </span><br />
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<span style="font-family: Verdana,sans-serif;"><a href="http://1.bp.blogspot.com/-pRX7FCztRTE/U-w-AJQGrsI/AAAAAAAAaVY/gNcOkA5ODq0/s1600/2014-06-23%2B11.02.10.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-pRX7FCztRTE/U-w-AJQGrsI/AAAAAAAAaVY/gNcOkA5ODq0/s1600/2014-06-23%2B11.02.10.jpg" height="320" width="240" /></a></span></div>
<span style="font-family: Verdana,sans-serif;"> Once my school got out in June, we had several adventures....camping with family was first. Then a Giant's game at AT&T park, 4th of July parades, and a few perfect-weather beach days. Chris and I went away for a few days where I attended the I Teach K kindergarten teacher's conference by day, and we explored the city by night. Grandma stayed home with Scarlett, and got her workout from the little lady! Scarlett "graduated" from the toddler class at her school, and will be starting the preschool class next week!</span><br />
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<span style="font-family: Verdana,sans-serif;"><a href="http://3.bp.blogspot.com/-KxIxU6iCH9A/U-xAZ-4A7DI/AAAAAAAAaVo/A0x1Nx5HAeI/s1600/2014-07-03%2B09.57.31.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-KxIxU6iCH9A/U-xAZ-4A7DI/AAAAAAAAaVo/A0x1Nx5HAeI/s1600/2014-07-03%2B09.57.31.jpg" height="320" width="240" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-cPkaxVW4MbA/U-xAZYZSSYI/AAAAAAAAaVk/q27n_rzH0w4/s1600/2014-07-26%2B17.16.00.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-cPkaxVW4MbA/U-xAZYZSSYI/AAAAAAAAaVk/q27n_rzH0w4/s1600/2014-07-26%2B17.16.00.jpg" height="320" width="240" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;">The most amazing thing? We have had only a tiny tiny handful of appointments this summer. Scarlett was originally scheduled to have surgery in July, but with the seizure activity in June and new medications to balance, we all decided it was best to wait. Since we left the hospital, we have seen NO seizures. She has weaned off of some of the medications, and is down to just one mild seizure control med, which is very tolerable for her and us. If this keeps up, she will have her reconstructive surgery around December. Until then, I am enjoying her full head of hair...</span><br />
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<span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-oe6DUkL8ay8/U-xAcaunNoI/AAAAAAAAaV8/2GEqDeTmFTU/s1600/2014-08-04%2B08.31.07-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-oe6DUkL8ay8/U-xAcaunNoI/AAAAAAAAaV8/2GEqDeTmFTU/s1600/2014-08-04%2B08.31.07-2.jpg" height="320" width="240" /></a></span></div>
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<span style="font-family: Verdana,sans-serif;">We haven't gone a day without commenting on how she is developing. She signs/speaks (usually together) constantly. She has learned so many new words in the last few months...bus, watermelon, star, night, butterfly, hungry, train, colors, body parts, animals...we stopped counting a while ago.</span><br />
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<span style="font-family: Verdana,sans-serif;">She is a dancer. Any music comes on, and she is moving. I won't say she has great form, but she has enough enthusiasm to cover it. She jumps, kicks her legs out, stomps, wiggles, shakes and </span><br />
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<span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-IlfeGl7Trzk/U-xAc4LnMII/AAAAAAAAaWA/PgC6ppE6Y7Y/s1600/2014-08-04%2B20.21.49.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-IlfeGl7Trzk/U-xAc4LnMII/AAAAAAAAaWA/PgC6ppE6Y7Y/s1600/2014-08-04%2B20.21.49.jpg" height="320" width="240" /></a></span></div>
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<tr><td class="tr-caption" style="text-align: center;">Beach lounging with Uncle Danny</td></tr>
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<span style="font-family: Verdana,sans-serif;">This weekend, Scarlett will be the flower girl in her Uncle Danny's wedding. There are several lists of things to do, especially since school starts for Scarlett and me the next day! We'll be incredibly busy for a few days, but it should be a good time. I promise I will post a pictures of her in the dress I made for the wedding before Christmas!!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Flower girl preview!</td></tr>
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Here's all the videos I could upload - enjoy!!<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/videoseries?list=PLaOhInqfOT7mgb8-JFYgiiMvRN1yBlbpl" width="400"></iframe>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com7tag:blogger.com,1999:blog-906621410106004328.post-39340087067370880302014-06-15T21:32:00.003-07:002014-06-15T21:32:31.706-07:00Seizures<span style="font-family: Verdana,sans-serif;">We are home after a 5 day hospital stay. Yuck.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Let me out!!</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-6eOEhbwDv-s/U55wAfTxFfI/AAAAAAAAaOo/m5MGeAHRmk8/s1600/legs.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-6eOEhbwDv-s/U55wAfTxFfI/AAAAAAAAaOo/m5MGeAHRmk8/s1600/legs.JPG" height="294" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Baby jail</td></tr>
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<span style="font-family: Verdana,sans-serif;">Scarlett has been having visible seizures for a few months. For the last few years, she has had none (that we knew about); it was one of the few "expected" brain tumor effects that we weren't dealing with. We noticed them right around her last MRI in March. Her doctors tell us they can just start sometimes, with no new cause. We had an EEG in April when we thought they were increasing; with confirmed seizure activity then, we began medication for them. A few weeks later, when the medication did not seem to have any effect, we increased it. And then increased it again. Then saw another neurologist, who added a second anti-convulsant. None of the medications worked, and the seizures have continued to increase in frequency.</span><br />
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<span style="font-family: Verdana,sans-serif;">Her seizures are not what most people think of: she does not fall to the ground convulsing. The typical pattern is that her eyes tick to the left repeatedly, her left hand opens and closes and her upper body twitches for 5-10 seconds. As soon as it is over, she is back to whatever she was doing, unphased by the interruption. Sometimes, she continues to move - putting food in her mouth, playing with a toy - through the seizure. If she is walking, she seems to sense it coming and can fall to her hands and knees safely, seize, then get up and keep going. It is strange, but not particularly invasive to her.</span><br />
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<span style="font-family: Verdana,sans-serif;">On Tuesday, she had another MRI. It was perfectly clear, so we are sure
that this is not tumor-induced, which is fantastic. However, that
leaves a long and arduous list of possibilities. We knew the seizures were continuing to increase in frequency, and we estimated 10 a day - that seemed like a lot to us. As we sat in the clinic room with the nurse practitioner, Scarlett had 5 in less than an hour. That prompted a discussion about how frequent they are really happening. It was a startling realization that with that kind of pattern, she was likely having upwards of 50 a day. This prompted her team to speed up their planned evaluations, specifically a 3-day long EEG that would give them a chance to look for patterns and a source of the seizures. That day, Chris drove Scarlett to the hospital in the morning for the MRI, then home; back in the afternoon for clinic with me, then home again; when we got home, we got calls from the hospital that they had a bed, and they were ready for her that night. She was admitted by 7:00pm.</span><br />
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<span style="font-family: Verdana,sans-serif;">EEGs measure electrical activity in the brain. The patient is fitted with electrodes to pick up changes in the brain activity. As the brain functions, it creates waves on the monitor connected to the EEG machine. Seizures, which are like electrical surges in the brain, show as sharp spikes and abnormal waves. Since Scarlett has had some strange behavior along with the seizures, they did a video EEG, so we had a video camera trained on her (and therefore us) at all times so that the doctors could compare her brain activity with her behavior in the moment. To help the doctors track the seizures, we were to push a button when we saw one; that would mark the time and we would type in notes about what she was doing or what we saw. The doctors were very impressed that Chris was catching almost all of the visible seizures within seconds. </span><br />
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<span style="font-family: Verdana,sans-serif;">In the first day, they got a reading on the actual frequency of seizures - more like 15 an hour, hundreds in a day. And that's with medication already firmly established. We only see some of them - they are often absent, where she might just blank out for a few seconds, others still follow the same twitching pattern we have seen for a few months. Over the last few days, we have tried several things to get a handle on them - varying medications at varying doses and steroids - and are just now starting to see a change that we hope will stick. She went down to 5-10 seizures a day early in the weekend, then only 1 in 12 hours overnight. With that, they let her go, and will check in again soon to see where we are.</span><br /><span style="font-family: Verdana,sans-serif;"></span><br />
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<span style="font-family: Verdana,sans-serif;">It's been wild, since this was the last week of school for me and I had to be packed up by Friday afternoon for construction to begin right away (and, in fact, they started on Friday, moving all my organized piles to the middle of the room to "help" me!) Chris spent 3 nights back-to-back in the hospital while I visited in the evenings. Finally, last night, I was free, so I stayed while he got to sleep at home. We're readjusting to hospital life - we haven't been inpatient at Stanford for a really long time, and things are different (mostly for the better)!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Don't touch my baby!</td></tr>
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<span style="font-family: Verdana,sans-serif;">The biggest change for us in hospital life is Scarlett. She is mobile and gets bored quickly. When she was an infant, she stayed in the crib or our arms without much complaint. Now, we are managing a jumping, climbing, walking escape artist! The medications kept her more sedated than usual, but she is still pretty lively. With the EEG on her head, and the video monitor on her, it's quite cumbersome to move around, and she easily got tangled or stumbled. Her favorite way to fill the boredom was to either eat - primarily graham crackers with crumbs everywhere - or to scoot her toy train around the room.</span><br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-Maw2Tz3VARw/U55wB43g3UI/AAAAAAAAaPE/5QlyBVlKZuA/s1600/photo+4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-Maw2Tz3VARw/U55wB43g3UI/AAAAAAAAaPE/5QlyBVlKZuA/s1600/photo+4.JPG" height="320" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jumping on the chair while wired up.</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/--sZUzdvIEfg/U55wBYvhTxI/AAAAAAAAaO8/uql89PnqUhU/s1600/photo+3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/--sZUzdvIEfg/U55wBYvhTxI/AAAAAAAAaO8/uql89PnqUhU/s1600/photo+3.JPG" height="269" width="320" /> </a></td><td style="text-align: center;"><br /></td><td style="text-align: center;"><br /></td><td style="text-align: center;"><br /></td><td style="text-align: center;"><br /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just plain bored.</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-lzWSAlJGb8Y/U55wCjnIVAI/AAAAAAAAaPQ/2ei2zRM-tL8/s1600/stand.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-lzWSAlJGb8Y/U55wCjnIVAI/AAAAAAAAaPQ/2ei2zRM-tL8/s1600/stand.JPG" height="320" width="274" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Despite the many toys we brought, she found the soiled linens bin to be most engaging.</td></tr>
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<span style="font-family: Verdana,sans-serif;">The next steps are vague - there are many approaches to seizure management, and we are getting an overwhelming amount of information about them all as we learn more. The doctors are working to find a medication solution that balances the sedation effects with effectiveness - stopping as many seizures as possible with the least impact on her daily life. This is proving difficult, but is critical before the next phase is discussed: surgery. She is slated for cranial reconstruction in July, so we need to make some big decisions on how to move forward. According to our doctors, they would usually take several months to try to manage seizures before even discussing surgery. However, with a brain surgery already on the books, we need to seriously look at the options before we move ahead or close any doors.</span><br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-0KNEb3MCos4/U55wAbRNWWI/AAAAAAAAaOs/3mcSOoVDQYw/s1600/hair.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-0KNEb3MCos4/U55wAbRNWWI/AAAAAAAAaOs/3mcSOoVDQYw/s1600/hair.JPG" height="253" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy helping entertain her while the technician cleans glue and tape from her hair.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cruising the hospital halls in the new push car - the highlight of her stay, besides ice cream on-demand.</td></tr>
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<span style="font-family: Verdana,sans-serif;">It's great to be on the other side of that stay, and hopefully we stay out for a while, seizure-free.</span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com5tag:blogger.com,1999:blog-906621410106004328.post-62118999568857611262014-04-23T14:08:00.000-07:002014-04-23T14:08:15.850-07:00March and April Recap<span style="font-family: Verdana,sans-serif;">Here's what Scarlett has been up to lately...</span><br />
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<span style="font-family: Verdana,sans-serif;">She had an EEG to measure seizure activity. Her seizures were confirmed, and she started a new medication to help manage them. The seizures are still present, so the medication will need some tweaking, but none of it is interfering with her days. </span><br />
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://3.bp.blogspot.com/-cTYo1Jbc6h8/U1fLt3fGTgI/AAAAAAAAZuk/wixxX-R1u9w/s1600/2014-04-02+09.40.56.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-cTYo1Jbc6h8/U1fLt3fGTgI/AAAAAAAAZuk/wixxX-R1u9w/s1600/2014-04-02+09.40.56.jpg" height="320" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Wired up for EEG. She was sleep-deprived for several hours the night before to help increase the likelihood of catching a seizure during the test - torture for her and us!</span></td></tr>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-HakCxMj3BiU/U1fLu9zNswI/AAAAAAAAZuw/SrZWvL0DedA/s1600/2014-04-06+18.21.55.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-HakCxMj3BiU/U1fLu9zNswI/AAAAAAAAZuw/SrZWvL0DedA/s1600/2014-04-06+18.21.55.jpg" height="320" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Ice cream parlor for mommy's birthday</span></td></tr>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-X24ZofkDBqk/U1fLuf8CXvI/AAAAAAAAZuo/zaTHAekmphY/s1600/2014-04-10+06.56.22.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-X24ZofkDBqk/U1fLuf8CXvI/AAAAAAAAZuo/zaTHAekmphY/s1600/2014-04-10+06.56.22.jpg" height="320" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">She has a new fascination with purses - carrying her own and emptying mommy's!</span></td></tr>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-OMbaxFduTiE/U1fLvmKE5EI/AAAAAAAAZu4/DY3l7zMjH48/s1600/2014-04-18+14.02.56.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-OMbaxFduTiE/U1fLvmKE5EI/AAAAAAAAZu4/DY3l7zMjH48/s1600/2014-04-18+14.02.56.jpg" height="320" width="299" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">New occupational therapy goal: dressing herself. We have a ways to go...</span></td></tr>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://1.bp.blogspot.com/-Najc8iloQow/U1fLw9oUhUI/AAAAAAAAZvE/7dNncWxh2a0/s1600/2014-04-19+11.29.49.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-Najc8iloQow/U1fLw9oUhUI/AAAAAAAAZvE/7dNncWxh2a0/s1600/2014-04-19+11.29.49.jpg" height="240" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Carousel ride at Happy Hollow</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">We went to <a href="http://wecan.cc/We_Can/Family_Camp.html" target="_blank">Jack's Camp</a> with other brain tumor families. It was a great weekend!</span><br />
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<span style="font-family: Verdana,sans-serif;">Scarlett did several Easter Egg hunts in the last week. By the time Easter actually arrived, she was starting to get it, and enjoyed opening her eggs (filled with stickers!) She got dressed up and played with her cousin Caleb.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Helping daddy blend her meals for the week.</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Playing horsey!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">She got her new and improved hearing aids a few weeks ago. They needed a few tweaks from the audiologist, but now they're running full time and she wears them with no complaints. They are really high-tech - with a digital microphone that we can use to enhance our voices for her, a connection for her iPad to directly go into her hearing aids, and self-adjusting features that maximize her access to the sounds around her. Plus, they're pink. Always a plus. </span><br />
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<span style="font-family: Verdana,sans-serif;">The biggest new development is that Scarlett is walking independently!! She has been taking a few steps between people for a while, but last week, she set her mind to it and just started walking around the house. </span><br />
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<span style="font-family: Verdana,sans-serif;">She started with a few steps (surely in part because of her fancy cape from <a href="http://capes4heroes.com/" target="_blank">Cape4Heroes</a>!)</span><br />
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<span style="font-family: Verdana,sans-serif;">Then, last week, we snuck around the corner of the living room to see this:</span><br />
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<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;">Now, she's on the move everywhere she
goes! At school, she follows the other kids around and does a good job
dodging them as they play around her. She can stand on her own, pick
things up and carry them. She tries to sign while she walks, but still
needs her arms for balance. I am not sure what finally changed after a
year of using the walker, but she decided she was ready. Yesterday at
physical therapy, we officially returned the walker, and even got the OK
to have her wear regular shoes (without braces or inserts) for a while!</span> </span><br />
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<span style="font-family: Verdana,sans-serif;">Last week, my article was published in the <i>Narrative Inquiry in Bioethics </i>journal. It's one among a collection of stories from parents who have children with pediatric brain tumors. I am very proud to have contributed to this, and hope that doctors and other professionals will read it and gain some insight into parent experiences that will benefit families who go through the same things in the future. If you are interested in reading the journal, you can access it <a href="http://www.nibjournal.org/current/index.html" target="_blank">here</a> or with Project Muse access (with a university or library affiliation). Just for fun, I searched for myself in Google Scholar...</span><br />
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<span style="font-family: Verdana,sans-serif;">There I am! Somehow second when I search my name, but there.</span><br />
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<span style="font-family: Verdana,sans-serif;">Tomorrow, we visit the neurosurgeon to discuss plans for her next surgery to continue rebuilding her skull. We're hoping that he can continue to wait into the summer, when our schedules all calm down a bit...we'll see how patient he can be. The idea of surgery now - days (weeks?) in the hospital, trying to keep this new walker from escaping her crib...ugh. Procrastinating won't help, but it is the least amount of fun I can imagine for our summer. </span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com8tag:blogger.com,1999:blog-906621410106004328.post-64056618176084679252014-03-10T20:48:00.000-07:002014-03-10T20:48:15.516-07:006 Months Post-Chemo<span style="font-family: Verdana,sans-serif;">Scarlett had an MRI last week. It was clear! We didn't have too many concerns, but that doesn't mean much. She's doing great, so we will wait another three months before we scan again.</span><br />
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<span style="font-family: Verdana,sans-serif;">We had to wait quite a while for her turn in the MRI, so daddy made sure to keep her entertained.
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<span style="font-family: Verdana,sans-serif;">She is teetering on the edge of 30 pounds, and has grown just tall enough to need 2T and 3T clothes rather than 24 months. The doctors are watching closely to see that she continues to grow, as children with such extensive tumors and treatment often do not grown appropriately. So far, she's okay (still short for her age) but we are watching carefully.</span><br />
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<span style="font-family: Verdana,sans-serif;">We have noticed some strange episodes, and we are all pretty sure she is having seizures. This has come up several times, so it is not much to note, but this time I think she will need medication. Her doctors are not concerned, and have essentially been waiting for this. They know we don't want to give her medication unnecessarily, but the concern that these seizures may disrupt her cognitive development is mounting. We would rather give medicine twice a day than have her regress or be uncomfortable. </span><br />
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<span style="font-family: Verdana,sans-serif;">A little medicine is minor for us, so we will see how it plays out over the next few months. We are also going to be seeing an ENT specialist to see if they can give us any insight into Scarlett's swallowing difficulties. We can only attack one concern at a time!</span><br />
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<span style="font-family: Verdana,sans-serif;">I found out this week that a piece I wrote about Scarlett will be published in a medical journal. <i>Narrative Inquiry in Bioethics</i> is publishing a special edition all about parent experience with pediatric brain tumors. My piece was chosen as one of the few to be included in the printed journal, so I am very proud! I will share it as soon as it is officially out.</span><br />
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<span style="font-family: Verdana,sans-serif;">In my last post, I mentioned <a href="http://www.nickybear.com/" target="_blank">NickyBear</a>, who entered hospice. He passed away this weekend. Another baby lost, another family shattered by brain cancer. </span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com5tag:blogger.com,1999:blog-906621410106004328.post-91472155939260349222014-02-17T19:57:00.001-08:002014-02-17T19:57:35.913-08:00Valentine's Day 2014<span style="font-family: Verdana,sans-serif;">V-day has come and gone once again, and I feel like this year we really made progress.</span><br />
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<span style="font-family: Verdana,sans-serif;">To recap:</span><br />
<span style="font-family: Verdana,sans-serif;">Feb. 14, 2010 - I found out I was pregnant.</span><br />
<span style="font-family: Verdana,sans-serif;">Feb. 14 2011 - Scarlett's first dose of chemo.</span><br />
<span style="font-family: Verdana,sans-serif;">Feb. 14, 2012 - Scarlett had surgery to place a feeding tube.</span><br />
<span style="font-family: Verdana,sans-serif;">Feb. 14, 2013 - quiet...sitting at my parents' house.</span><br />
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<span style="font-family: Verdana,sans-serif;">Last year, we were doing well, but this year, we set a goal of being moved out by Valentine's Day...and we did it!</span><br />
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<span style="font-family: Verdana,sans-serif;">There was nothing too fancy about our Valentine's day - it was exhausting at school that day (me in the classroom with 25 sugared-up kindergarteners and Chris working in the muddy garden) so we were both happy to sit and enjoy a nice dinner at home with Scarlett. I couldn't help myself from thinking about how much has happened in the last 4 years...in a way, we've come full-circle, with Scarlett doing so well and back in our own place. I know better than to think it is complete - we're never out of the woods with this tumor - but we are back on track to feeling like we are making forward motion, and it feels GOOD!</span><br />
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<span style="font-family: Verdana,sans-serif;">We're all moved in to the new house now. It's great - Scarlett has a playroom (that we share as an office and sewing room); we have a big kitchen that fits all the great stuff we have had in storage for almost two years. A big garage for storage, a backyard to play and garden in - so much space! We are still getting settled, but it's all going well so far.</span><br />
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<span style="font-family: Verdana,sans-serif;">We have been working on filling up this big house, since the combination of a much smaller previous home with the purge of moving into storage two years ago meant we had very few big pieces. We couldn't get too wild, so we have limited ourselves to Craigslist, thrift stores and hand-me-downs. We have done great so far - couch and loveseat from Craigslist for $75, rug from the thrift store for $30, and several small pieces from friends and family who are downsizing. We even got a great rocking chair and entertainment center (which we are using as a coffee table for now) from a blog reader nearby (Thanks, Jamie! Sorry again that Scarlett was so grumpy!) We did get one big gift: my grandma wanted to make sure we had clean clothes (and appliances with warranties) so she bought us a new washer and dryer - but even those came from an outlet and were about half off!</span><br />
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<span style="font-family: Verdana,sans-serif;">Scarlett loves the new house, and has found all kinds of ways to be adventurous here. Here newest game is to push the dining chairs up to the kitchen counters and climb up. Luckily, the chairs make a terrible racket on the tile floor, so she is never very sneaky about it. She is already making friends with neighbors as she walks laps around the block in her walker; she even made it most of the way around the lake across the street - it's about a mile around, so we were pretty impressed!</span><br />
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<span style="font-family: Verdana,sans-serif;">She has a new trick this weekend, too - she can now stand up from the floor with no support and take several steps. Tonight, we counted 16 steps from daddy to momma! We're going through the typical walking milestones at a snail's pace, but she's doing it! Despite all the specialty gear, therapy and fancy shoes we have tried, I have decided that she is going to just have to learn the way other kids do - falling, practicing, and taking her own little risks - in her own time. She has a big job as flower girl in August, and I am getting more optimistic that she may just walk for it!</span><br />
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<span style="font-family: Verdana,sans-serif;">Her signing is blowing up, too - she's added signs for momma, daddy, water, home, Cosmo (our dog), socks, shoes and pear. She has an approximated word for most signs, too. The more we understand her, the less she has tantrums, so it is good for us all.</span><br />
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<span style="font-family: Verdana,sans-serif;">The first steps of her institutional deeming Medi-Cal (full-coverage insurance for certain special needs) set in, so she can finally get her new ankle braces and hearing aids, which have been withheld while we awaited the last several months of bureaucracy. Now we are hoping the coverage is in full-swing before her MRI in early March.</span><br />
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<span style="font-family: Verdana,sans-serif;">Finally, yet another of our brain tumor friends is losing their battle. <a href="http://www.nickybear.com/" target="_blank">Nicky</a> suddenly began hospice this week after the return of his tumor. He went through much of the same treatment as Scarlett as an infant, plus additional radiation and hyperbaric oxygen treatments for the resulting damage. He has deteriorated very fast, and his family is now left to make him comfortable as the tumors take over. I hate it, and it seems to be happening over and over and over lately. We've lost so many kids in the last few months; something has to be done.</span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com2tag:blogger.com,1999:blog-906621410106004328.post-12382126078204798482014-01-23T20:18:00.002-08:002014-01-23T20:18:47.815-08:00New Chapter<span style="font-family: Verdana,sans-serif;">There are some big changes in the air!</span><br />
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<span style="font-family: Verdana,sans-serif;">We're moving! We've been living with my parents for about 18 months. It's been great to have somewhere safe and dependable to live while we recovered in many ways from the stress of Scarlett's diagnosis and treatment. We started to casually look at available rentals in the area to get an idea of what might be out there, and the perfect place popped up! We signed a lease, and we'll be moving February 1. It's a very nice house is a great neighborhood; we decided that we could not risk the hard-fought IEP, so we had to stay in the same city (and IEP is managed by a school district, and would have to be renegotiated with a new school district). We'll have plenty of space, a backyard for Scarlett and Cosmo to play and a lake across the street.</span><br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-xLcn6YwLtaU/UuHn7F8ezvI/AAAAAAAAZrU/F9gBdQyHnVo/s1600/2014-01-18+13.51.44.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-xLcn6YwLtaU/UuHn7F8ezvI/AAAAAAAAZrU/F9gBdQyHnVo/s1600/2014-01-18+13.51.44.jpg" height="320" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Keeping a non-eater occupied in a restaurant...sock hands!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">Of course, moving is it's own brand of stress, but we're trying to stay focused on one small step at a time. It's a huge change financially, so we have to be careful. It will be tricky for a few months while we adjust, but we have a plan. We are looking for a few things we don't have - a couch, washer and dryer are first on my mind - on Craigslist, in thrift stores and garage sales, and everything else will come together eventually. Most of what we have has been in storage for a year and a half, so it will be like Christmas all over again as we unpack!</span><br />
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<span style="font-family: Verdana,sans-serif;">We're very excited, and feel like moving is the end of this recovery chapter. When we moved in to my parents house, Scarlett was doing well, and we thought we were completely finished with the stress of chemo...just to have more tumor found a few months later. Our recuperation took a bit longer than expected, but we still feel like we have made good progress in finding stability financially, medically and emotionally. I don't know what will happen next - we're always wary of the chance Scarlett could relapse again - but we will just keep managing it as it comes.</span><br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-YhH58K_cmnU/UuHn8g1u44I/AAAAAAAAZrk/4H_JQaOU9dM/s1600/2014-01-15+17.41.11.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-YhH58K_cmnU/UuHn8g1u44I/AAAAAAAAZrk/4H_JQaOU9dM/s1600/2014-01-15+17.41.11.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Cutest protest nap in the doorway after a tantrum.</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">It's a new phase for Scarlett, too. Her little body is still recovering, and we are all learning how to manage the long-term effects of the treatments she has endured. Over the last month, we have been dealing with her immune system. Everyone in our house has been sick, but she got a nasty infection that has lasted for several weeks. She is on her second round of antibiotics with eye drops after both her ears and eyes were goopy. She seems to catch everything that walks by her. Despite the runny nose and all, she takes it like a champ and doesn't let it slow her down.</span><br />
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<span style="font-family: Verdana,sans-serif;">We're seeing her adjust more and more to life off treatment. She is learning signs all the time - sh'es regularly asking for her iPad, saying "home", greeting everyone who comes in the room (over and over again!) and trying new signs she sees on Signing Time. </span><br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-UJkSPStZTA4/UuHn7gOzxcI/AAAAAAAAZrY/vnFyoznHTxc/s1600/2013-12-26+17.06.07.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-UJkSPStZTA4/UuHn7gOzxcI/AAAAAAAAZrY/vnFyoznHTxc/s1600/2013-12-26+17.06.07.jpg" height="320" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Evidence of her pushing a chair to where she wants, climbing up and playing with the light switches and whatever she finds on the counter!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">We're happily packing, planning and settling in to life. We're busy like always, and still knee-deep in concerns, particularly around Scarlett's medical coverage that is in limbo right now. We keep moving forward, and hoping that things will settle themselves if we continue to explore all avenues.</span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com4tag:blogger.com,1999:blog-906621410106004328.post-17543503493548853192013-12-31T10:26:00.000-08:002013-12-31T10:26:05.329-08:00Scarlett's Year in Review<span style="font-family: Verdana,sans-serif;">This year was full of joy, challenges and victories for Scarlett.</span><br />
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<span style="font-family: Verdana,sans-serif;">January</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-l0zC5K-yPww/UsLf5idlWFI/AAAAAAAAZos/P6kpSm_nsEQ/s1600/wecks083.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-l0zC5K-yPww/UsLf5idlWFI/AAAAAAAAZos/P6kpSm_nsEQ/s320/wecks083.jpg" width="213" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Scarlett began chemo for the second time in her little life. She also learned to crawl out the dog door!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">February</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://1.bp.blogspot.com/-fZ9PSm08zE0/UsLgX8G7xkI/AAAAAAAAZo0/C3Es0gkTkr4/s1600/IMG_6481.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://1.bp.blogspot.com/-fZ9PSm08zE0/UsLgX8G7xkI/AAAAAAAAZo0/C3Es0gkTkr4/s320/IMG_6481.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Scarlett was the NEGU Kid of the Week for the <a href="http://www.negu.org/" target="_blank">Jessie Rees Foundation</a>!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">March</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://1.bp.blogspot.com/-xOU9Whi4f3o/UsLg72HTnWI/AAAAAAAAZo8/-hCiB7ef-fs/s1600/IMG_6777.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://1.bp.blogspot.com/-xOU9Whi4f3o/UsLg72HTnWI/AAAAAAAAZo8/-hCiB7ef-fs/s320/IMG_6777.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">A clean MRI - yea!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">April</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-Q4QIsJPHZms/UsLhLhlkU-I/AAAAAAAAZpM/aoYf6ejUJZU/s1600/IMG_6857.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="296" src="http://4.bp.blogspot.com/-Q4QIsJPHZms/UsLhLhlkU-I/AAAAAAAAZpM/aoYf6ejUJZU/s320/IMG_6857.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Scarlett started walking with the help of her walker. It took her about 2 minutes to figure out how to change directions, go up driveways and over edges.</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">May</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-q7TZAK8PgI0/UsLhw58Lp1I/AAAAAAAAZpY/HO8pqhZMjPI/s1600/2013-05-15+18.17.01.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-q7TZAK8PgI0/UsLhw58Lp1I/AAAAAAAAZpY/HO8pqhZMjPI/s320/2013-05-15+18.17.01.jpg" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">We went to camp to spend the weekend with other families of brain tumor kids. We love it! Scarlett lost her last pacifier, so we said goodbye to them!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">June</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-tvdx0uXSZ6Y/UsLh7pPzYDI/AAAAAAAAZpk/leTio8OXVC0/s1600/IMG_7223.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="186" src="http://4.bp.blogspot.com/-tvdx0uXSZ6Y/UsLh7pPzYDI/AAAAAAAAZpk/leTio8OXVC0/s320/IMG_7223.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Scarlett had to go to the ER after a night of vomiting. Thankfully, it was just a stomach virus. Then, we went on vacation! We got to meet two other families with kids who have battled the same tumor. We had a great day at the San Diego Zoo</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">July</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://3.bp.blogspot.com/-poEgT1-gMyw/UsLigR7_RCI/AAAAAAAAZps/K45wz2w2LHQ/s1600/2013-07-22+09.59.57.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://3.bp.blogspot.com/-poEgT1-gMyw/UsLigR7_RCI/AAAAAAAAZps/K45wz2w2LHQ/s320/2013-07-22+09.59.57.jpg" width="213" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Scarlett became an adept climber. She started to get into everything, climbing onto chairs, tables and counters. She participated in her second year of Relay for Life, and was awarded "Most Inspirational Relayer"</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">August</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-m3S6soC6DI8/UsLisA3gm0I/AAAAAAAAZp0/WrwiJI35GG8/s1600/2013-08-23+12.54.50.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://4.bp.blogspot.com/-m3S6soC6DI8/UsLisA3gm0I/AAAAAAAAZp0/WrwiJI35GG8/s320/2013-08-23+12.54.50.jpg" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">No mo' chemo! Scarlett finished chemo with no sign of tumor. She started her second year of preschool. She also got glasses, which she took approximately 2 weeks to break.</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">September</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://3.bp.blogspot.com/-eG92W5nl0UM/UsLjDJT3z5I/AAAAAAAAZp8/om2icEnSfxc/s1600/IMG_8185.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://3.bp.blogspot.com/-eG92W5nl0UM/UsLjDJT3z5I/AAAAAAAAZp8/om2icEnSfxc/s320/IMG_8185.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">We went camping twice in September, once with other brain tumor families and once with Scarlett's school. Both were wonderful, and we learned a lot with both groups. </span></td></tr>
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<span style="font-family: Verdana,sans-serif;">October</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://2.bp.blogspot.com/-2_JH6-YWSyQ/UsLjfxP_ZNI/AAAAAAAAZqE/i-T0jomD75Q/s1600/IMG_8290.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://2.bp.blogspot.com/-2_JH6-YWSyQ/UsLjfxP_ZNI/AAAAAAAAZqE/i-T0jomD75Q/s320/IMG_8290.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Scarlett turned 3! We hosted our third annual blood drive to celebrate, collecting another 70 pints of blood for Stanford Blood Center. We also secured her school needs through an IEP after months of preparation. She had another clear MRI - yea!!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">November</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://4.bp.blogspot.com/-MJX0yAreNRA/UsLkRGGS9KI/AAAAAAAAZqQ/vCa2Fi1_ssg/s1600/2013-11-27+16.43.56.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-MJX0yAreNRA/UsLkRGGS9KI/AAAAAAAAZqQ/vCa2Fi1_ssg/s320/2013-11-27+16.43.56.jpg" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">We made huge strides in our continuing quest for support services for Scarlett, including a handicap placard, respite care and the next steps toward long-term insurance.</span></td></tr>
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<span style="font-family: Verdana,sans-serif;">December</span></div>
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<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://3.bp.blogspot.com/-9J47qZ5zgrY/UsLkjxDLedI/AAAAAAAAZqY/qCRL4DZzgNU/s1600/IMG_8885.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://3.bp.blogspot.com/-9J47qZ5zgrY/UsLkjxDLedI/AAAAAAAAZqY/qCRL4DZzgNU/s320/IMG_8885.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Scarlett made the move to a toddler bed this month. She is working hard to walk, sign, talk and eat on her own.</span></td><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><br /></span></td><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><br /></span></td></tr>
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<span style="font-family: Verdana,sans-serif;">Thank you to all who have been following this girl in 2013 (and beyond). I know I don't post as much anymore, but we still deeply appreciate the support and cheering that comes from our friends here. I hope everyone has a happy new year! Bring it on, 2014!</span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com10tag:blogger.com,1999:blog-906621410106004328.post-17068580346504364632013-12-25T21:40:00.005-08:002013-12-25T21:40:40.238-08:00Christmas 2013<br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Helping daddy cook dinner</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">With cousin Caleb</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Christmas in the Park</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Breaking into the stockings</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">New doll house from Santa, complete with furniture, doll family, Christmas lights and ghost in the attic...</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">...and grandpa's addition of a "fragile" leg lamp!</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">The TV fire replaced the real one since it we've been on no-burn days for weeks.</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Boots with handles to put them on by herself!</span></td></tr>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-large;">Merry Christmas!</span></span></div>
Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com4tag:blogger.com,1999:blog-906621410106004328.post-50738663488884797592013-12-12T06:00:00.000-08:002013-12-12T19:16:27.818-08:00Tumor-versary<span style="font-family: Verdana,sans-serif;">Scarlett has been tumor free for a whole year! One year ago today, the mystery spot was removed. That mystery spot was soon discovered to be a regrowth of the nasty original tumor. One year ago, we were faced with making difficult choices about continuing treatment, further brain damage and an unknown future.</span><br />
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<span style="font-family: Verdana,sans-serif;">In the last 12 months, Scarlett has endured 16 chemotherapy IV infusions, 56 doses of oral chemo, four MRIs, weekly physical, occupational and speech therapy and the insertion and many, many pokes into a port catheter.</span><br />
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<span style="font-family: Verdana,sans-serif;">Today, Scarlett went to school, and then spent the afternoon giggling with her cousin. What a difference a year makes.</span><br />
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<span style="font-family: Verdana,sans-serif;">Next week is the third anniversary of the real beginning of Scarlett's battle with brain cancer. It's a miracle how far we have come. </span><br />
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<span style="font-family: Verdana,sans-serif;">While we celebrate our successes, others are grieving or preparing for their own children to leave this world from this disease. My heart is crunched each time I see the posts from a mother planning her child's funeral. Please keep Lilee and Phoebe's families in mind as the have their first Christmas without their little girls, and with Abby's family, who are watching their daughter's last days.</span><br />
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<span style="font-family: Verdana,sans-serif;"><a href="http://www.thetruth365.org/petition/" target="_blank">Sign the petition</a> to make childhood cancer research funding a priority of the US Congress. </span>Brandi Weckshttp://www.blogger.com/profile/02163888241085994421noreply@blogger.com4