amaya at lake

amaya at lake

Wednesday, June 1, 2011

Some random stuff from Tuesday

      This week at physical therapy Amaya was riding the bike with the added 30lbs. when she lost balance and started to tip over. I reached over to catch her but had to use both hands, because that was one heavy load! Thirty pounds sounds like a lot but it feels like a lot more! I was shocked that she's even able to ride it so well (except for that momentary loss of balance) especially up the small hill. She rides it around the whole facility which is about two small blocks in length on each side.  I was quite impressed with her.
     Ever since her surgery we've had several "guests" call Amaya and speak to her. Yoda, Darth Vader, The Grinch, the Humu humu fish, and Santa, to name a few. My husband is the one who disguises his voice and talks with her, but she buys into it and its quite fun. It was also a great distraction during her surgery and recovery. "Santa" called yesterday to check in. While Amaya talked with him I overheard her say "you know how I have one leg short and one leg long. Well I'm doing physical therapy and then I'm gonna get it longer and I'm brave!"  I couldn't help but smile! I felt proud and happy. She has been so accepting of who she is and how she is, without letting it limit her. As well as brave and courageous. All things that I worried and wondered about as she was younger.
     At the end of our session with Cassi ( Amaya's therapists) she noticed that Amaya's left calf is tighter than the right. She showed us some stretches to do to help loosen the muscle. She also thought that maybe we should get a higher lift on her shoe, because she seems to not be walking on it properly because its not quite level.  Right now she has a one inch lift on there, but her discrepancy between both legs is closer to two inches.  This is something we've struggled with now for almost five years. How long to make the lift? Some orthopedics tell us that it doesn't matter, some say get it as close to the discrepancy. We've had it higher before. It use to be one and a half inches when we first got them (when she was about one), but she would fall a lot as the lift would catch on surfaces. Especially since her knee would give out (dislocate) and also cause her to fall.  Weight is also an issue with a higher lift. The bigger it gets, the heavier it gets. Right now its at about a quarter pound, which is a lot to carry around.  We've tried to cut as much extra wight off by tapering off the front and back and by using canvas shoes. But now it seems that we might have to go back to a one and a half inch lift.  The trouble with not having the lift too short is that the muscles on the back of the leg don't stretch/develop like the ones on the normal leg do.
     It seems like she's gone thru a growth spurt recently, which makes the discrepancy look longer. We haven't had x-rays taken in about a year so we're not exactly sure what the difference is. Her doctors wanted to limit her exposure to radiation as she'll definitely be getting a lot more x-rays during the lengthening process and throughout her life.

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