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.

Wednesday, May 5, 2010

back to school

Well, after the initial drama of this morning's drop off, Jimmy had a great day at school! I even got to go in to work for a couple of hours, although it was almost more frustrating to be there with so many projects half done and others yet to be started. It's all relative, though. Today it was just good to be there and see everyone. It's hard to answer "how is he?" or "how are you?" with any sense of depth or reality, but being able to say that he was at school felt a whole lot more normal than anything else has in these tumultuous two weeks.

So as I mentioned, Jimmy had asked me to stay at school with him, and I was willing to do so, but at one point he was goofing around with his friend while a very cool artist was addressing his class, and after the third time I told him to knock it off, he informed that I could go ahead and leave. I was happy to oblige, although it was very strange to leave him in someone else's hands, even the wonderful hands at his school. I wish he had a better wheelchair, this one is a clunker and he really needs a pediatric model. No word from the pediatrician today on progress toward getting one.

After school, we went back to the pool for a dip, this time with a kickboard. Then we stopped at the Farmer's Market and sampled everything until it got so crowded on the sidewalks to maneuver around. At 3:00 when I had yet to hear from anyone regarding whether or not the spinal would be tomorrow, I called the neurologist's office again. Once again I left a message with the assistant's voicemail, but this time I directed the message to her rather than to the doctor. About an hour later, I was rewarded with an actual human phone call! Yay! She was surprised that I had not yet heard from the clinic about scheduling, because we were on for tomorrow. Just as we got to the Farmer's Market, a woman from the pediatric oncology unit called. She explained what the doctor had already told me, that he wanted Jimmy's spinal done there because they are experts with the procedure, and she added that they have the best anesthesiologists. Unfortunately, no one had been able to authorize the procedure for tomorrow - not due to an insurance problem, but because their administrative assistant had a family emergency. So we scheduled it for Friday, which is better because Jimmy has a half day tomorrow and gets to spend most of it in his Lego Engineering department, which he has been loathe to miss thus far. I was able to change his Friday acupuncture appointment to tomorrow at 1:30, so it all works out nicely.

Anyone notice how I talk too much to avoid confronting the fact of a lumbar puncture to extract my baby booy's spinal chord fluid? No? Good.

He'll be sedated, no food after midnight tomorrow and we get there at 9:00 for anesthesia at 11. I can stay with him until he falls asleep, then they will (lalalalallalalalalaala I can't heeeaaaar you) and then bring him out to me when he's all done. He'll be right as rain - or at least back to his usual weird self - within a few hours.

And then?

Let's pine for a miraculous, swift recovery, shall we?


  1. Yes, miraculous, swift recovery, you got it!

  2. He'll do great on Friday. I mean really, the kid likes the acupuncture needles :-) It'll be the same, but you know, bigger. He'll be brave, I just know it, and you will too!

    So glad he got sick of your nagging and made you leave his class.

    You guys are doing great.