Nee and the girls at Red River, NM
The girls and I on the 4th of JulyJust a note... I am always thinkning and muddling through how best to help Kyla with the challenges that she faces because of CMS, but it seems some seasons make me more intense for the search of community and help than others. I have recently made more contact with others who have CMS or their children have it through facebook. It is so comforting and rewarding to find others who are on this journey with Kyla.
Most recently our concerns with Kyla are her fatigue (late in the day), physical therapy issues (running and walking form), writing fatigue, inattention, and sleep habits.
We are trying to give her mestinon doses somewhat closer together to see if we can help her body adjust to the long summer days.
1 comment:
Writing fatigue can be really difficult to deal with. I still struggle with it but was given some tricks to try when I was around Kyla's age that sometimes helped me.
I don't know if it would help at all (it did sometimes for me) but maybe she could try which fingers she is holding the pencil with? Like maybe holding it in between the middle and ring fingers instead of the index and middle finger.
One problem that I have always had is fatigue/control/over compensating. My hand will get really tired really fast, I'll lose control of my pencil or pen, and I'll inadvertently clench my muscles to compensate for it. Then I can't get my hand to release. I don't know if this happens to Kyla. Hopefully not. But if it does...sometimes it helps me a little to just make a point of reminding myself to relax.
Also, I found that writing smaller is a lot easier for me. Actually, I've just always written very small...used to get in trouble for it at school...but then found out from either Dr. Engel or Dr. Kuntz (not sure which one, honestly) that it was probably my body just automatically trying to conserve energy.
Wow. This was a really long comment. Hopefully it's at least a little bit helpful.
Peace,
Lauren
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