Hi Karen - I was just wondering how Daniel is doing? Do you have him on a low dose of deflazacort or completely off of it? How about his bi pap - any luck in getting him to use it? What about the walking - how's he doing? Did you guys finish your remodel? Will broke his wrist when we were camping so he has a cast now...it's his dominate hand so am worried about that. Let me know how you are doing. Char
Sorry it took me a few days to get back with you. I have just submerged myself into research. How long have you known your son has DMD? We just found out about 3 to 4 weeks ago. I have tried for a few years to tell the doc that my child did not move like he should be...chalked up to traumatic childhood (he came to me as a foster child in 2006) then it became just a confidence issue. I am glad I did not stop trying to figure out what was going on with him. I wish with all my heart it was not DMD. I thought they would tell me they could fix him with special shoes or something like that. Now I am trying to make sense of all this.
Yes we live in the big city of Pinckney. Nick has a cough assist and it is wonderful - as far as useful equipment goes. He was scared of it at first but now asks for it when these newly formed allergies flare up. Nick had scoli surgery last year and we are doing those sleep studies at U of M as well. We are doing o.k. - I did go to the PPMD conference in June and was overwhelmed by all the info...in a good way!
Hey I think I accidently deleted your reply to me. I was getting rid of some of the comments when I got to the second one which I thought was the first I realized I deleted something without reading it. Did you by chance respond to me about when I asked how your son's IEP went? If you did I'm very sorry but I didn't read it. So anyway how did it go? Feel free to totally ignore me if you would like
No problem Karen. I can understand the school issue being a sensitive issue for you. It is not something we have had any problems with and I really can't even imagine having to deal with all that on top of the dmd. All of our dealing with the school have been how to make it easier for him to get around and thankfully he is in eight grade and we have never had any problems. Of course as a mom I worry about him going to high school next year.
I hope your next IEP meeting with the advocate coming with you goes well. Having a person helping you that is not emotionally involved can only be a plus.