THERAPY
Brenda Brames- Most children have a real strong interest in doing things for themselves and that might be just the way to disguise the therapy. You can practice brushing hair, opening the drawers, picking out their clothes, washing themselves, the sky is the limit….I involve normal everyday functions in her therapy all throughout the day. Like her walking for example, I don't have a session with her walking. I just walk her to the next activity and to the potty. This usually consists of about 5 minutes of walking, maybe 20 steps. I don't know I haven't really ever counted the steps.
One important thing that you might want to think about: The only permanent damage in strengthening is the nerve damage. Any nerve cells that may have died while waiting for the diagnosis are dead and there is no way to bring them back. But the muscles are not dead, they are just atrophied. This mean no nourishment or no development. Which you CAN correct. You just have to nourish them and develop them through therapy and helping your child keep these muscles active. The strength can come back. The control all depends on the remaining nerve cell count. The larger the nerve cell count the higher range of strength you have to work with. The lower the nerve cell count the lower range of strength you have to work with. And there is no way to measure this. You just keep working with your child and eventually he will get to where his strength has stopped increasing. That is exactly where the strength gain comes from in these children. They are just strengthening already existing muscles.
Water therapy is a must. Crystal moves like a normal child in the water. She actually has a horse's troft at home that she gets in everyday. She can walk all by herself in there. She has all kinds of stunts she pulls in there. She is getting real close to be able to back float. The key is to have the water level up to about an inch below their shoulders. This relieves them of enough weight that the muscles they have are enough to let them be normal. When I first put Crystal in the pool, it was like teaching a 9 month old baby how to walk. I even had to teach her that she needed to put her foot down because it kept wanting to float to the top.