open_the_door

My son will be 5 and has CP diplegia. He started walking independently at 3 and a half. Before then he had to use a walker. He has been in O.T. since he was 4 months old. He started with P.T. at around 1 year of age, and then speech at 16 months. He was on a waiting list. He did start birth to three at 2 years of age(didn't know about it till then). There are alot things out there. This is a great message board for questions and answers. My son took baclofen for a short time. It made him too loopy so we stopped. He gets botox every 3 months, primarily in his hamstrings and adductors. He wears ankle AFO's. At night he wears knee immoblizers and night boots. He now has P.T. two times a week(one in the pool one on land. He has O.T. once a week, and speech once a week. He does horse therapy once a week. As soon as school starts, he will have P.T. half an hour once a week, O.T. half an hour once a week, and speech for half an hour once a week. He has an IEP which I will have updated in September since he will need new goals. We have been truly blessed that our insurance covers alot of the above otherwise we couldn't do it. He is progressing very well. He has his days. He was diagnosed with nephrotic syndrome in November of last year, and it really slowed down his progress in many areas. He is now off all meds, and is doing better. He does have constipation problems. I give him miralax every once in awhile but I try to keep it away from him.

He will get taller AFO's in about 2-3 months because they will try a new kind with hinges. He also saw a physiatrist last month. I gave him a copy of all of my son's x-rays. The physiatrist is really pushing a baclofen pump but we are not ready for that yet. He also wants to start him on another med. which we have to have the nephologist approve. There is always something and I have 3 other kids in which one has special needs too. To say the least, I'm certainly not bored.