living well in braces

[Guest guest]

Hello - Thanks to everyone in advance. I am writing with a request for advice

on how to navigate certain types of physical activity with braces (hinged). My

new daughter (just adopted her in Sept. from China; she is 10) just completed

three months of serial casts to help correct some deformity in her feet so she

could wear braces. This is now complete and I am so encouraged that she can

walk quite well in her AFOs. (She has some type of CMT2 with dropfoot and very

significant atrophy in her lower legs).

I am writing to this community for any advice on doing active things like riding

a bike, swimming, approaching phys. education class and camps, etc. My ortho.

doctor suggested trying a stationary bike in the basement for now and maybe

looking at some different (nonhinged) AFOs for some summer use. I know I have

heard that swimming is a great form of exercise and, indeed, my daughter wants

to swim. However, when I was in China with my new daughter we swam every day

and navigating the pool with her was a bit of a nightmare. Her walking without

braces is dangerous and then really dangerous on a slippery surface. Do people

who swim wear the braces to the edge of the pool and then take them off?

I am so happy to have found this group. I so appreciate the " real world "

advice, up to date information, and really interesting, smart people on this

board. The doctors and brace shop vex me at times with information that is so

" canned. " For example, I have found that my daughter can wear snow boots,

fashion boots, mary-janes, ballet style shoes (esp. with a crossover strap) and

slippers. Why do people insist that sneakers are the only option when they are

not, and for people who live with this every single day to school, formal

events, etc. I am also so annoyed that insurance companies are so willing to

pay for diagnostics and so little to help with walking aids but that is another

story.... Please pardon my rant.

Anyway, my daughter has an excellent spirit. I know she will do very well as

she moves with pride and confidence every day,whether it be in serial casts,

braces, or using a wheelchair. We had no idea

she had CMT and a major walking disability when we went to China to adopt her

but we have found a wonderful person and really want to help her do the things

she would like to do.

Cherie