What a looooonnnnnggggg day! We spent 5 hours at Childrens with Noah speaking to 4 different people (Drs etc) First they asked many questions and did some ataxia tests. They would like his ankles to bend at a 90° angle and they are not. Right one is worse. They want him to do some foot wedge exercises to stretch the Achilles tendons. He has to get more blood work done to check Vitamins, cholesterol, lipids etc. on Saturday. One lady talked about equipment such as getting the right shoes to help him stay more steady. He has trouble standing for long periods of time and walking long distances. They requested him getting fitted for a wheelchair so he can be able to go to Kings Island or walk around on vacations. Problem is our insurance wont cover physical therapy so we cant get that for him through there and we have to find a physical therapist to measure him to get the correct wheelchair but again insurance wont cover it. So hopefully they can pull some strings so he is able to enjoy going somewhere with us rather than staying home all the time. We also have to see an optometrist for his jerky eye movement. There is a vitamin that they have given their patients with Friedreich Ataxia that helps that they sell at Costco. They really cant tell me how he is progressing until they reevaluate him in 6 months. The Dr gave me an example of a guy who found out he had FA at Noahs age. He is now 28 with 3 daughters, is in a wheelchair, works and drives a special car where the break and gas are on the steering wheel. Kids who are diagnosed at age 6 are the ones in wheelchairs permanently and have more health problems at his age. Gives us hope he will still live a somewhat normal life. Overall his spine is straight, heart is healthy just waiting on more blood work. Fingers crossed he is not pre diabetic. He has a higher chance with this disease.
Posted on: Fri, 22 Aug 2014 00:34:41 +0000