Started this discussion. Last reply by Tonya Mar 28, 2011. 2 Replies 0 Favorites
I am organizing a 3 day camp for boys age 6 to 10 in southern NH. The focus is for the boys to be in a group of kids just like them, where they are not the slowest or where they don't have to sit…Continue
Started Mar 24, 2011 0 Replies 0 Favorites
Hi, I am organizing a 3 day camp for boys age 6 to 10 in southern NH. The focus is for the boys to be in a group of kids just like them, where they are not the slowest or where they don't have to…Continue
Started this discussion. Last reply by Susan Rathfelder Jun 8, 2010. 1 Reply 0 Favorites
Can anyone tell me how adaptive PE works? Can the regular PE teacher do it? Does it happen in a separate place from the regular class? Thanks! TonyaContinue
Started this discussion. Last reply by Brenda May 8, 2012. 14 Replies 0 Favorites
Gus is starting kindergarten next year and we just had his IEP meeting. His preschool teachers and his pediatrician recommended that he have an aide for recess, PE, and any fieldtrips. The district…Continue
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Let's keep in touch- our sons are the same age, and we have daughters the same age, too. I'm a teacher, too! Let me know how it goes.
I have a four-year old son with DMD as well. Your kids are beautiful!
Colin was diagnosed this past summer. We started him on Vitamin D, CoQ10, and Omega-3 right away. I think the Vitamin D or something started helping right away. That along with daily stretching, and the night splints to keep his heel chords stretched. Is Gus doing those? They really helped Colin. Looking at your pics, your little Gus reminds me a lot of Colin.
We did finally start Colin on deflazacort about 3 months ago. The difference in his strength, stamina, and energy is huge. I know it is scary, but Colin can do so much more, and he is so much more confident. We have family in Charlestown, NH, so we do come east from Washington State every few years. Hang in there. We are pretty new to all this, too. It's hard, but it helps to know you're not alone.
Jeni
Wyatt takes 3000IU of Vitamin D, 50mg of CoQ10, and 15ml daily of an antioxident drink, Also he takes like every other day a liquid baby laxative (he has horrible constipation).
We are slowly starting him on other stuff too, he's just so small for some of the stuff (protandium, Haelen 951, etc.) So he will start those things sometime this year.
I hope we can talk soon, take care.
Melissa
I am not a carrier. Keelan skips exon 42-46. If Gus has what's called the Stop Codon or
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