Tuesday, October 18, 2016

Spectacular Six

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.

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!

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.

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.

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.

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.

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!

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.

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.

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. 

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.

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.

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.

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!

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. 

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!
With cousin Caleb

With cousin Olivia...somehow we don't have one with twin Andrew!

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. 

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.

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.
Scarlett driving!
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. 

Chris checking off his bucket list with skydiving!
Mommy and daddy-only trip in the summer!
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.
First day of school 2016
We have also been looking for ways to give back more. We are becoming more active in the California Chapter of the Pediatric Brain Tumor Foundation (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.

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 Autism-friendly stage performance of Beauty and the Beast across the bay next month, too.We're going in February, but I'm about ready to start a countdown now!

Mommy made the Minnie cake!
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.