And yes he does wear clothes. He gets them super dirty, super quick though so usually takes a couple baths a day and doesn't want to put the clothes back on ;)
June brought the end of school. Michael had a VERY successful year! While he may not be typical, he did very well with typical children and made friends and socialized wonderfully. Academically he is beyond what most of the other little kids were but physically and cognitively he is still behind. We did get some great news though. There is another drug going into Phase 3 clinical trials for CDM and cognitive issues. We will be participating in the study!!!!!!!!!!!!!!!!!!!!!! Michael will be in Utah, so will end his current study prior to beginning the new study. Already scheduled. We again will be meeting Sarah and Josh who are flying in from England and hopefully Deanise and family will join us for the weekend. We will have the boys together again. Michael has a visit with his sister and brother prior to having to go get surgery. One last run around with Ruffle Butt. Michael had surgery again...
Michael completed his first year of school. Had his recent IEP meeting and he is staying right where he is with all his services and 1:1 aid. The meeting was fantastic. His school is very supportive and adore him. Sometimes traversing the issues that come with a child that has a medical IEP can be very difficult. It was in Roseburg. Such a relief that they didn't question any of his needs or supports and agreed. Michael has discovered girls in a way. His sister Adrianna is 16. She has friends over a lot. One came over named Kimberly and Michael absolutely went head over heels in "I want your attention". He told her she was cute and beautiful and had to sit right next to her while she was here. Other people tried to talk to him and he only had eyes for her. It was quite comical to watch. Michael at school recently needed a break and went into the Special Ed room to nap. He was on the f...
What a year! This has been a year of changes for both Michael and our family as a whole. So much has happened. Michael started 2 days at Head Start with typical children and does 2 days at the Education Learning Center as well. He is doing great at both. More interactions, more engagement, and more songs :) He shows off reading where his peers are not. Glad he has a strength to share. He LOVES riding the bus. He wants to ride the bus everyday. He wants to take his cat too. No Michael, cats are not allowed. We made the trek to Washington DC to meet representatives and participate in a Congressional hearing on Myotonic Dystrophy. Continue to fight for funding for a cure. We left Miles behind to attend the MDF Gala. Michael enjoyed himself but was the only Little Little one in attendance. We have wonderful friends,...
Our James enjoys his "freedom" as well! LOL
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