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, June 6, 2010

Sunday, June 6

Sorry for the lapse in updates! I've been distracted by a hellish household electronics vortex of horror.

It's been a rough couple of days for our young hero. If Wobbles were a superpower, he'd surely save the world. He's been unable to use the walker at all since we brought it home, he can't find that elusive balance point. Blah, blah, blah.

We tried out the motorized wheelchair at Mission Beach, those things are pretty sweet! The attendant tried to tell me that he could only use the manual chair because the electric ones were reserved for people with permanent disabilities. I did my patented vapid blink at him until I figured out that he was assuming Jimmy had a tweaked knee or something (no, his mom's the one with the bum knee). When I assured him that our wobble boy's predicament was legit, he hooked us up and also gave us a bunch of cool info about camps and programs we can look into over the summer.

Tonight Jimmy got really mad at Clara for riding her bike. It seems that they'd made a secret pact that she won't ride until he can, too. Sweet, so very sweet - but also so very not fair. They both had friends over and he had just terrorized the girls away from the vicinity of his video games.

My sister Ellie texted me that she knows someone who has a child with a very similar story. She's going to put us in touch via email. You have no idea how badly I need to hear every detail. One of the most frustrating aspects of this ordeal is that no one shares it; there's no one to compare stories with, no real life happy ending to give us encouragement when everything seems overwhelming. Now would be a really good time for a success story.

On a lighter note, Jimmy received an awesome get well card from his Great Uncle Dave. The card itself made him laugh because it said "poopy," and inside was a $10 and the note: "James Kennedys are tough. You'll get through this. In the meantime, buy yourself an ice cream on your old Uncle Dave." Bill's dad - Dave's brother - is also James Kennedy =)

Highs and lows, on we wobble.

Better things tomorrow?


  1. "patented vapid blink" -- nice.

    Those guys weren't around yesterday, Jacquie. I'll track them down today, and get you that success story....


  2. So sweet. And I bet Clara felt all sorts of bad for riding her bike. But she is 8. And she does not get to ride the cool motorized wheelchairs at the beach. Sigh. What a strange land you are living in right now, J!

    Damn that elusive balance point. Perhaps this week's physical therpay sessions will help out. And I can't wait until you get in touch with Ellie's contact. That would be incredibly helpful, I'm sure.


  3. Oh, and details regarding the "household electronics vortex of horror" please!