Week 5--Wheelchair adventures and more Time Outs!

Well, its hard to believe its been 5 weeks already. The time has truly passed quickly.

Ethan continues to do well but has also been continuing to express a "bad attitude" resulting in more time-outs. I'm confident that this has nothing to do with the treatment but instead just a result of a variety of things: Exhaustion; discomfort and pain; frustration; and partially just him with some attitude as screaming & loud use of his voice has been his tool of communication when something gets taken from him or he wants to show his displeasure.

Needless to say, Ethan will no longer let us even touch his legs without screaming until he's blue in the face and in tears for fear that we will attempt to stretch him. It was so bad yesterday that his physical therapist left mid-session as he was so irritable. We were able to get in to see a pediatric orthopedic surgeon on Sept 1 to discuss muscle lengthenings so we are excited to see what that conversation brings as with the tone disappearing more everyday, fixing those "short and extremely tight" muscles are our next step. We are hoping that Ethan will be able to keep some composure as when he is relaxed he is a noodle but if he tenses up, we are fearful the dr will not be able to get a good idea of what we are dealing with.

Our mission to get a wheelchair this week was successful as his ability to stand and use his walker has been depleted due to the tone disappearance. Ethan did smile when he found out that HE could make it move in various ways. Before we left the store, he had turned in a circle, went backwards/fowards and side-side...All with a smile on his face. Needless to say, by the time we got out to our vehicle, it was " Please get me out of this thing Mom!"... I smiled...at least he said "please".. Ahhh...Yet another hurdle we have jumped and can cross off our list. He continues to tell us though that he doesn't want to use it long...just for a little while.

As always, your continued thoughts/prayers are much appreciated.


For today...that's it! :-)

Lisa