We started physical therapy at TCH yesterday. During her assessment last week, she was found to have “scattered skills,” meaning that her skills ranged from the 4-month level to the 8-month level. She has incredible upper boddy chest strength but incredibly poor abdominal and trunk strength, which is what is possibly causing most of her skill setbacks because she is using the wrong part of her body to do certain tasks.
Common sense tells us that because her abdomen was so huge that she compensated by using her upper body and her shoulders to get done what she wanted to do. Explains why she can sit, but she can’t get to a sitting position or crawl.
Today, Pam, her therapist, also noticed that she has low tone in her lower legs and ankles as well as no arches in her feet. When she stands, she rolls her ankles or angles out her feet to try and balance.
Mommy and Hannah’s homework: The homework for this week is: 1) positioning Hannah in sitting with her hips leveled with or slightly higher than her knees to facilitate weight bearing through her legs ; 2) encouraging Hannah to lean her trunk forward when moving into the stance position so that her body weight is shifted anteriorly onto her forefoot, bilaterally, instead of her heels; and 3) encouraging Hannah to stand while holding on to facilitate balance reactions in the stance position.
So, she wants Hannah to get orthopedic high-top shoes called Supramalleolar Orthosis (SMOs) from SureStep. They are similar to the picture on the left. “The SureStep system is designed around the child with low muscle tone. It is a truly remarkable early intervention tool to help stabilize and align the lower extremities of children with hypotonia.”
The cost of these custom-fitting orthotics? $1300 A PAIR (made by a local company because they are “custom”)! And she would probably need a new pair EVERY 6 WEEKS until she figures it out on her own. I hope our insurance company will cover it because there is no way we can afford these. Pam is going to write a medical letter of necessity and ask Dr. B., our pediatrician, to write a prescription for them.
We’ll see how that works out…
Yikes I was thinking to begin with that she wouldn’t wear the shoes so they would last a while. I didn’t think about the customing changing. Good luck with the insurance company.
Oh those therapy braces and shoes! It is crazy how much custom made plastic and velcro is….it absolutely drives me crazy. Luckily with Regan being a patient at Scottish Rites in Dallas, all Orthotics are free, and they also always give us a pair of shoes to go with them. Such a blessing!
I hope that insurance comes through for you.
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here’s to the hope for insurance or having her figure it out in 6 weeks! 🙂
We use an AFO almost identical to the Surestep for the exact same reasons that Hannah will need one. If your insurance doesn’t cover them, you might check the local hospitals and therapy centers– many of them have “lending libraries” or “recycling programs” of equipment for this very reason, and something like the Surestep, which isn’t custom made for every child, could very well be in there. If you put out the word on what you are looking for and the size you need, you might get results. While she might end up with camo or something instead of pink, it’s certainly better than shelling out 1300 dollars every 6 weeks. There’s an organization in the Houston area called the Health Equipment Recycling Coalition– not sure what their number is or if they’re still around, but you might try googling for them or similar organizations.
That’s my two cents. Best of luck!
~Jess
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I know I don’t comment much, but know that I think of you guys often. I just wanted to mention that SureStep is what Fisher wears, and has worn for the last 3 years (wow has it been 3 years already?)