As parents of boys with dmd how do we deal? Our boys are wonderful and we love this dearly but how do u deal with having your heart broke at every doctor visit. As most of you know a few months ago we were being sent to a lung specialist and another heart doctor. Well we finally had both appointments and the heart doctor couldnt even find his LVH now i dont know if that means i have a crappy doctor this time or if by some chance it corrected itself. However the lung doctor wasnt quite so crappy which meant the appt was terrible. They did a pft on him and found out he was only exhaling at 35% and inhaling at 60% which to me that doesnt tell me a whole lot except that his lung function is crashing and its like it started overnight. He is 9 years old and has the syptoms of a teenager he cant even walk or pull himself up he can barely stand long enough to get his pants pulled on. Now his pt is telling me that he is losing his ability to write with a pencil and he is starting to slow on his reading speed. His shoulder is still tender where he fell before christmas. When we have kids we always think our kids will be happy and healthy i never expected to go thru all these within 9 years. What happens next where do we go from here? Do we just try to make him comfrontable? I cant bare the thought of not having my son one day and it just seems that that day is trying to come sooner than i can handle.

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