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Tuesday, September 6, 2011
We have stopped to smell the flowers:

Just a few more weeks until Stryder and I leave for the Mayo clinic for his intensive therapy/; it's been a long road. Prior to going to the Mayo clinic we were told that Stryder may never talk. After we got back, Stryder has learned a lot of new words, so I am very hopeful. I can't express what i feels like to finally have someone tell you that he will talk and actually see proof in it. Up to that time we only heard "I don't know what else to do for your son" and that was a hard pill to swallow every week. We tried everything, well not everything obviously, the thing that works was the last. I have felt that there is an end to this long journey and got reassurance that "Apraxia" will not be with him forever and for that, I am grateful!

Now, our new journey: he is having problems walking long distances and not even that long of distances. We went to the Shriners after he was evaluated and accepted and the Dr. there said that he has the same physical problems that children with Downs Syndrome have. I don't know what that really means but what I do know is that his legs start hurting just walking to the mailbox and you can't put him on your shoulders because his hips pop out. It really makes me sad because it seems as though it's getting worse for him. Just going around the block (it's a large block) we have to stop and rest for a good half hour. I don't know who we talk to about this or what to do. His X-rays on his hips look good so far, but we have to go back every year to make sure there are not other problems. He can walk and play inside okay, it's just the actual task of walking that puts pain on him.

I asked the question, "Who do I go see- anyone know?" on the Apraxia message board and it was brought to our attention that we should ask about EDs .
I remember looking at this before we went to the Mayo and I forgot about it with all the new information we got. Now looking back, it looks as though this may be worthwhile. When we were at the Shriners, they did the flexibility tests and he could touch his toes to his shins, touch the back of his fingers to his wrist, all of it.
Next month while we are at the Mayo, I will at least raise the issue of "could this be Ehlers-Danlos?"


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Angela Rozewski
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