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
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!