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.

Monday, June 21, 2010

backing up, Thursday June 17

So, the EEG was really weird. Have you ever had one? We arrived to find that despite the fact that the test had been ordered on April 30, no one had bothered to call for an authorization. So we had to wait a while for that. I had finally received word at 5:30 the night before that Jimmy did not need to sleep during the test. If that had been required, I would have been expected to keep him up until midnight and then wake him at 4:00. Can you imagine waiting for and insurance authorization after that?

They got what they needed within 30 minutes, and we went back to a little room where the tech showed Jimmy all kinds of cool stuff that would be attached to his head, and then he climbed into bed.

Yuck. Flashbacks to other days in hospital beds. But as was the case in any photo of my boy awake throughout this ordeal, he smiled for the camera.

First they marked all the places where the electrode thingies would go:

Then they placed one on every dot and covered it with goo and a square of cloth. There were a total of 24.

The they wrapped the whole mess inside a big bandage and started to record whatever his brain was doing.

At one point, he was asked to blow on a pinwheel for three minutes

Then they turned off the lights and he turned on his side and chilled for about 45 minutes. At the end, they put this strobe light right into his face and made it do all kinds of funky flashy disco rhythms. I asked if this ever sent parents into seizures. She laughed, but didn't answer me.

Then they unceremoniously turned on the lights, pulled off the thingies, and wiped up the goo.

We've got an appointment on the 28th to look at the results. I played that little "what if" game in my head for a little while, until Jimmy interrupted my thoughts by jumping up out of the bed and walking out of the room ahead of me.

And we took our bad hair day to lunch at the beach, where it was rivaled by buffalo cheeks.

Not to be deterred by grease of any kind, we headed back to the hospital right after lunch for our last scheduled Physical Therapy appointment.

Jimmy did great, mastered every test and game she threw at him. It was poignant, there had been so many days when I watched other kids stand on one foot on the squishy dome thing and toss balls into hoops or onto a rebound trampoline while Jimmy lurched around the room with full support. Suddenly, here he was up on the dome, on the treadmill, walking around like it wasn't even a big deal.

It was a big deal.

His muscles are very tight and sore, and he is particularly weak on his left side and in both calves. I argued that his normal activities seem to be enough PT, and she agreed. He received strict instructions to follow her prescribed exercises and stretches for the next two weeks, and to take it easy with himself when he needed to.

Then he graduated.

And started on his home regimen.

Better things, indeed.

BEST things.


  1. Yay!!!! Brilliant, Jacquie. Just brilliant.

  2. How great is that shot of him on the bike??? Perfection.

    And although I don't like what Jimmy is having to do in the photo with the squares over the goo, before the big bandage, I just have to comment that it is so dang cute!

    And finally, congrats, young James, contrats, on your most important graduation evah!


  3. Look at him on his bike! It's like a miracle.
    I love his giant smile in every electrode-and-goo photo. He's so adorable.