Thank you so much for answering my questions about activities. I just want to put her in a bubble for about a year until those arteries have a good chance to grow, but I know that's not realistic! It makes me feel better to know that other kids are active and doing just fine. I'll still be a little on the cautious side for a bit since she's only a month post surgery, but I'll be more relaxed about things as time goes on.
Hope Will enjoys second grade!
Ginny McCarthy <vamcc@...
Hi Laurie -- I saw your recent posts. I am so happy that things worked out
My son is also 7 and was diagnosed with moyamoya back in May 2003. We live
right outside Boston and were blessed to find Dr. Scott so soon after his
Will has that "tingling" that you mentioned -- he had frequent episode
following the surgeries but they are finally [and hopefully] tapering off
now. He is most vulnerable when he cries or otherwise hyperventilates.
I didn't have to deal with the PE issue so soon since Will was in
Kindergarten for the surgeries and there was no PE. I did talk to Dr. Scott
about limitations -- and -- he was and is okay with Will participating in
physical activities [including recess on the playground.] . His continued
advice is that he shouldn't get overheated and should be well hydrated. I
only wish he suggested more limitations -- it would make me feel better.
Will plays soccer, baseball and just got his purple belt in karate. He is
going into 2nd grade soon. He will have a water bottle at his desk again
this year and the teachers know to encourage him to drink,drink, drink. The
school nurse is also aware of the issues. I leave a bottle of Motrin at
school with instructions to give it to Will if he complains of any kind of
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