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At age 11 and out of the blue, Jimmy lost his balance. His diagnosis is Acute Cerebellar Ataxia. He is currently wheelchair bound and we are working hard to find whatever it is that we need to fix. Here's where I'll try to keep everyone in the loop about what's going on.

Sunday, May 16, 2010

Weekend, May 15 - 16

It was a busy weekend around here! Jimmy continues to maintain his improved stability. I'm very dubious about claiming that he's on the road to well-ville. I'm afraid to hang our hopes on a speedy recovery because the path of this drama has been anything but predictable. I will say, however, that Jimmy has been getting around the house pretty well using a walker, and last night after he went to bed it was very cool to see that wheelchair abandoned in the living room.

We swam on Saturday, and had the wonderful benefit of a little sister in the pool to entertain and enslave.

I do feel most calm when I'm with Jimmy, but the two of us are verging on the cusp of too much togetherness. We get along famously and I find him endlessly interesting and engaging, but I just don't think farts are all that funny.

Clara went to a birthday party that afternoon and Bill took Jimmy to see Iron Man 2, and I suddenly found myself in the house with a couple of hours and no people! It was lovely. Naturally, I caught up on some work.

Sunday we were up and out early, Clara went to play at Beth's house and Jimmy had a performance with a group from school at the North Park Arts Festival's world music stage. He's part of the Giri Nata, a Balinese Gamelan orchestra.

He's missed a ton of practice, but they were great about having him along for this special performance. Of course, there was no ramp to the stage so we had to manhandle him up the steps and then bring up the wheelchair, but he was comfortable up there and the kids from school are used to seeing him in his ride.

Afterwards, he was invited over to a friend's house. I kept asking if he was sure that he was okay with that - what about the bathroom? What if it was hard to get around? Was he comfortable asking Henry's parents for help? He insisted that he wanted to go, and the parents reassured me that they were there and would keep a close eye on him, so after eschewing the fair food for a lovely brunch at Terra (Jimmy ordered potatoes and bacon), we dropped him off. Eek! And there I was again with no kids! Naturally, I went to Costco.

Then Autumn and her kids came over for dinner, and Jimmy shot hoops (remind me to put murder ball on my queue) and played piano and acted like a doofus and laughed about farts. And all is almost right with the world. Almost.

It was a long day, we're exhausted and ready to curl up on the couch and watch Survivor!

I hope all of you had a great weekend, too.

4 comments:

  1. I love that face of concentration!

    beth

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  2. Does wobble boy need or want anything from his godfather at this point? Does wobble boy's mother need or want anything from her godbrother?
    Pablo

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  3. Aw, the Godfatha! We don't need anything but the obvious, and I think we're on our way to getting it! What we WANT, though, is to see you and Kiley! Any plans to go to CT this summer? I think we'll be there in late July.

    Thanks, Pablo!

    Jacquie

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  4. OK, I wasn't going to comment. But, having two sons and a grandson, I get that you don't find farts amusing. Somehow, that seems to gender-related.

    Jacquie, Desi has kept me updated. I know what it's like to be a sick kid. It was actually harder for my mom than it was for me. Steve and I pray every day that Jimmy's recovery will be swift,

    Hey, have you thought of writing a book? Something along the lines of Sophie Kinsella?

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