For the longest time it has felt like we were losing the battle with hand function.  Stopping any more loss of functions for Maggie has been yet another one of our primary goals, since the diagnosis.  We spend most of everyday, watching what she can do, discussing what we saw that day and figuring out ways to help her keep functionality.

See, her constant arm flapping and hand wringing gets in the way of her using her hands as appropriately as she would want.  We keep getting reminded that she’s cognitively intact, not just by doctors, but by her as well.  We know she understands everything, just her body doesn’t always listen to her brain.

When we went to see the neurologist he had told us that eventually most things will stabilize and even start to improve if we work hard enough.  While that’s been true of a lot of things, her hands haven’t quite made it there.

It seems like recently she had stopped holding things in her right hand and would drop whatever she could grab with it.  She’s been wringing it incessantly for a number of months now, so maybe it just hurts.  But  this is a battle we really don’t want to lose.  Things just get more difficult when you can’t use a hand.  Other than weight bearing exercises and any fine motor activity that she will actually let us force her to do, there’s not much we can do to help, and there are only so many pushups you can make a 3 year old do.  The answer is 64 if you were curious.

As Jenny mentioned in her post, I’ve been trying my hardest to invent something that could help her.  Splints, velcro, weights.  Anything I could think of.  When we finally got a prescribed splint, I thought that was going to be the answer.  But it limits her use so severely, I’ve been afraid to even use it.  The whole fight has been frustrating to say the least.  Right now she hits herself in the face constantly, and bracing her arm has its own limitations.  It’s neurological – her brain is just stuck in this pattern and no doctors or therapists have been able to crack the code yet.

Then this weekend happened.


She has not been able to use two hands together like this since she was about a year and half old.  And she was doing it consistently this weekend.   It’s hard to express how awesome this is.  A majority of the girls with Rett have limited, if any, functional hand use.  It seemed Maggie was headed that way.  And she still might be.  But, at least for this weekend, she decided to head in the other direction.

Hopefully this means we’ve stabilized and will start to see some improvement now.  But if not; if it’s going to continue to fall off, I’ll have this little nugget of wisdom from my dad to fall back on – “if that’s the worst of it, it’s not that bad.”  For a man who can only use one of his hands and probably voted for Bob Dole, another man who could only use one hand, it’s more of his typically sage advice.

Every time I feel like we’re losing a battle,  I’m reminded of George Washington, who, though, he lost more battles than he won, always lived to fight another battle. And, just like him, we’re going to win this war.

5 thoughts on “Hand over hand battle”

  1. Great that she is using her right more. Maybe someday her parents
    Will also be less lefty. Btw I did not vote for Dole

  2. You betcha you are going to win this war. You guys are such great parents. I’m glad Maggie had a great week end. Keep up the good work. We love you. Aunt Bobbie

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