new routines

On Monday, Claire is starting SCHOOL!

While I have images of my tiny person with a tiny backpack sitting at a tiny desk, the real story is that she’s starting at a developmental preschool at the same place she currently has all her therapies. For the past 6 months, I’ve been getting her to 6 therapy appointments per week, which presents a bit of a problem for someone with twins– something must be done with Etta while Claire’s working on her skillz. So, for all this time, Etta has been attending the fabulous daycare at the hospital where my husband works.

Meanwhile, the therapy place has this “preschool,” which would be fully covered by Claire’s insurance and TEFRA, but we were waiting on a spot. This is a better situation because Claire will be able to get all her therapies in house, and not have to have them back to back, ever, which I know she will like, because when she has to have two therapies back to back, she mostly falls apart through the second session. And, on top of that, she can finally start the feeding therapy we’ve been waiting on because adding another appointment each week to the mix seemed a little nuts. It’s also better because she’ll get to be in a class with other kids with similar stuff going on, including another kid about her age who also has spina bifida! I really like the idea of her having a picture in her head that kids like her are “normal,” and I like that this preschool is a mix of kids with physical/intellectual/social disabilities, but also typical kids.

So, with Claire starting at the preschool, Friday is Etta’s last day in daycare. After 6 months of lots of one-on-one time with Claire, I have to confess, I’m really looking forward to some time with my Etta girl. And I’m REALLY looking forward to seeing Claire’s progress once she’s finally getting all the therapies she needs.

She’ll be in “school” from 8ish (let’s be real, I’m just striving to have her there by 9) to 4:00 each day, Monday-Friday, which is a big schedule change for us. Just getting the three of us out the door, Etta dropped off at daycare, and Claire to therapy by 9 three days a week has been a struggle for me. I think I’m going to have to start (sob) getting myself up early enough to shower and get myself ready before the girls wake up. I have been enjoying getting to sleep in to 7:30! (Can someone please go back and tell 22 year old me that one day I’d think 7:30 was sleeping in? She’ll laugh in your face.) And I’m really going to have to get better about having bottles and bags ready for the night before.

Who knew we’d be arriving at “first day of school” so soon?!

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Claire CRAWLS!

20130703-114050.jpgIf you’re following me on Facebook or Twitter or Instagram, you’ve already seen the bragging, but I have to share this with my blog friends too: Claire crawls now.

She’s been trying for a long time, months, and working on her skills in PT, but all she was really doing was lunging forward, ending up on her belly, scooting backward when she meant to go forward, and barrel rolling. She managed to combine those skills to get pretty much everywhere she wanted to be, but she watches Etta, and she knew crawling was the way to go. (Etta’s not walking yet at 15 months, though she cruises like a champ and could let go and walk right this minute if the thought actually seemed to occur to her.)

Then we got the shunt exactly a week ago, which removed a lot of pressure from her head/spine, and her neurosurgeon told us to fully expect faster progress in the mobility department. Which, I’m not saying correlation equals causation, but it sure seems to have worked. Yesterday was the first day her PT noticed her using her hip flexors, and yesterday she finally got her legs into the crawling equation and took off. She’s got forward motion and is also pulling up to her knees using the furniture.

Yesterday with her braces on and her therapist holding her arms, she also took actual steps, demonstrating she has all the components necessary to walk someday. Which just makes me want to say “HA!” to a certain rehab doctor who, about a year ago, after a VERY short exam, and ignoring our statements that Claire moved her legs intentionally, declared she would never walk. (Meanwhile her orthopedists have long said that she would, so we chose to believe them.)

I’m confident that Claire has had these abilities all along. It just took her a while to make the connections and figure it out, and while she may need a little extra help, she gets there. And she’ll keep getting there.

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Got it!

Claire Bear: an update

IMG_4053It’s been a while since I updated all of Claire Bear’s fans on how she’s doing these days. Most readers know that she has spina bifida, that she had surgery just days after birth, and that we’ve been sort of waiting to see how much her spinal defect will affect her.

The short answer is: she’s doing great. She’s a chilled out, happy girl who is a bit of a ham. She can charm any stranger with her bright eyes, big smile, and penchant for waving, giggling, and clapping. She is also a very observant little person, and seems to constantly be watching and figuring the world out. Even though she’s not into eating solid food yet, she loves to swipe pieces of it off her sister’s high chair tray, and before she got moved into the older room at daycare, would sit on the mat and swipe toys from smaller babies as they crawled by. She even figured out, on her own, from observing Etta, how to get from sitting unsupported down to her belly so she can roll around to wherever she wants to go. Where I used to be able to count on finding her wherever I left her, now she’s known to roll out of her room and down the hall. They even call her “the mechanic” at daycare, because she likes to roll under all the cribs and appears to be inspecting and fixing them.

Medically, she is doing really well also. She had a looooong day at the spina bifida clinic yesterday, and we saw rehab, urology, and orthopedics. Ortho continues to be impressed with how much function and sensation she appears to have in her legs considering the location and severity of her spinal defect, and the good news from urology is that we don’t have to start using catheters or anything at this point (bladder issues are very very commonly associated with spina bifida). Rehab, formerly a sore spot for us since one doc declared “she will never walk” after a very poor examination even after we said that she supports her weight on her legs for short periods, went OK too. We actually got to show the doctor how she can stand with support, and we got our first prescription for some AFOs, essentially her first pair of leg braces, which we hope will support her ankles and knees and help her learn to crawl, stand, and walk.

She’s been going to physical therapy for a couple of weeks now, and we are so happy to finally have that started. The therapist turns out to be the older sister of a friend from high school, and I have to say I just love her. Despite a very teary first session in which Claire *wailed* the entire time (her stranger anxiety has really ramped up lately– she also recently wailed at ZaZa’s, a local pizza joint, when the most grandmotherly, sweet-looking woman in the world dared to approach her), Claire has realized her PT is pretty cool and has neat toys, and now only cries when tired or frustrated with an activity.

Because Claire needs 3 PT sessions per week, 3 OT sessions per week, and now we’re talking about adding in speech therapy to help with her oral issues, we are working on getting her into a developmental preschool where she could receive all these therapies on site. With another one year old to wrangle, coordinate care for, and generally deal with, taking her to and attending that many sessions per week myself would really just be a logistical nightmare, and we’re so thankful this is even an option, that I could drop her off and know she was getting care from folks who don’t have a single issue accommodating her needs. Much as we LOVE LOVE LOVE our current daycare, the fact that she’s the only kid in her room who can’t feed herself or take a sippy cup is a bit of an issue. Even better, the preschool takes siblings, too, so if I get a job in the fall, Etta could join her. And the best news of all? Claire’s Medicaid TEFRA, a benefit she qualifies for because of her disability, for which we pay an income based premium, which covers basically all of her care not covered by the insurance we get through my husband’s work, would completely cover the cost of the preschool for Claire. AMAZING!

So, now I’m on the hunt for cute shoes that fit over AFOs (I’m thinking a sweet pair of mint green Vans might be my choice), and just generally excited that our sweet girl is finally getting the help she needs to make some progress in the mobility department. She’s starting to realize that Etta can do things she can’t, and it has her raring to go!