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.

Thursday, October 15, 2015


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.

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.

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.

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.

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.

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.

And today, she turns 5 years old. FIVE!  And she has plenty to show them.

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!
Scarlett, Andrew, Olivia and Caleb

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.  

First day of school 2015
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!)

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!)

With Caleb!
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!
Boo boo face!
But that’s not to say everything is simple.

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. 

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.

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.

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.

She is still small.  Her weight is about the 50th percentile for weight, but only about the 10th 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.

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.

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!

On vacation in Maui

 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:
  • California Children’s Services (CCS) – medical services for medically fragile children in California.  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
  • Medi-Cal: Chris receives pay via In Home Supportive Services (IHSS) to make it possible for him to stay home and care for Scarlett.  He gets paid for performing all of the needs that would otherwise require specialized care (dressing, diapering, tube feeding, food preparation, medical appointments, etc.)
  • Regional Center of the East Bay (RCEB) – County-based services for kids with special needs.  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.  When CCS officially declines feeding therapy twice, we can apply to have it covered by RCEB.
  •   School District – Provides out-of-district preschool, including speech therapy, occupational therapy, physical therapy, behaviorist, and transportation to school.

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.

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.

She had a blast.

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.

 I wonder where we will be in 5 more years.  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.  She’s so different, so strong.  I’m different, too.  We are taking the next steps together.

Saturday, April 11, 2015

Spring Break Update

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.

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 Bay Area Children's Discovery Museum yesterday - Scarlett walked herself everywhere, and asked for a "huuuug" when she needed a break.

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.

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!

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.

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!!

New baby cousins Andrew Douglas and Olivia Michelle
Scarlett and Caleb snuggling on Easter

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.

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.

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!

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.

The days are full of the good kind of busy.  Hopefully the summer will bring some vacation, because we are going to need it!