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.

Tuesday, May 4, 2010

Tuesday, May 4

Hello there, glad you found us. I'll try to update daily. Today I brought Clara to school and checked out the ADA bathroom and other areas where Jimmy's classes will be held for the duration of his ... what... what is this? An illness?A syndrome? An episode? I don't know, but I do know that his classes will be moved downstairs at school until he's out of the wheelchair. His neorologist had suggested that we stay home until the bloodwork he took on Friday came back. It came back, and it was all negative. Remember that Seinfeld when George thought he was dying because someone told him that his test was negative? Negative is good. I had missed this doc's call last night, but finally got to speak with his today while Jimmy made like a pincushion in the acupuncturist's chair.
He said that he was relieved that one test in particular had come back normal, it was the alpha feta protien or something. He said that this ruled out something that he had begun to suspect, something that he referred to as "a miserable disease." It creeps me out to think about what the doctors suspect. especially while Jimmy and the accupuncturist and I sat and talked about Chi and practiced visualizing Jimmy standing solidly, Jimmy walking, Jimmy running.

Now that we've ruled out more creepy stuff, it's time to schedule the spinal tap. We're looking at Thursday. The doctor thinks Jimmy will benefit from some sedation, he was pretty freaked out by the idea of the lumbar puncture. So he's going to try to get us in to the pediatric oncology hemotologists, because these are the peeps who do this procedure the most. Once again, we'll have an opportunity for humility and perspective and gratitude among the kids to whom a spinal tap is fairly routine.

I also spoke to Jimmy's pediatrician today, he's going to try to circumvent the need for that PT assessment before getting a pediatric wheelchair. Bill installed a grib bar in the bathroom that helps very much, and he has a contact at work who is giving us a shower chair tomorrow. We're trying to limit the out of pocket expenses, but of course we're going to make sure that Jimmy has everything he needs to be self sufficient. No 11 year old boy wants his mom holding him up while he pees, for God's sake. And vice verse, just for the record. Not that I don't want him holding me up... you know what I mean.

The big news though, is that we're going to SCHOOL tomorrow! It's been two weeks, and even though it's probably just going to be one day this week, it's a huge step. I don't know how he'll feel after the spinal tap on Thursday, so I consider Friday iffy. He is very apprehensive, but I know he'll feel much better once he gets there and sees all of his goofy friends. I've agreed to stay with him, but if he gets comfortable I'll try and get to work for a couple of hours. Imagine that?

So, that's our update today. Wish us luck in the morning, the hardest part is going to be getting his ass out of bed and out the door. Some things never change!

Thank you all for the comments, for your concern, for your thoughts and prayers. Please keep them coming!


  1. Oh man. I hope the first day back at school goes well for Jimmy. I'll be thinking about him.

  2. School? How exciting! How incredible! Good luck out there -- can't wait to hear how it goes.

    And, we're all breathless with anticipation. How's your toe???


  3. LOL, ellie. No one but you wants to hear about the bloody stump that was my toe. Be thankful I haven't posted photos.

  4. I, for one, am thankful! Not that I don't care, Jacquie.

    I'm loving these updates. Thank you.

    It creeps me right out too. Just keep on visualizing, and make your intent very clear for the cosmic waitress!!