info

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, May 24, 2010

Monday, May 24

I find myself avoiding these updates when I don't have anything good to say.

This is one of those times.

He's just as bad as it ever was at its worst. He can't manage the walker. He asked for help getting into bed.

On the other hand, he's adapted so quickly to life in a wheelchair - you should see how he launches himself out of that thing toward whatever he's after. He's been playing hoops in the back yard, and he jumps out of the chair to shoot and then tumbles down onto the grass, which has gone so long without mowing that we call it "the meadow". He's not fragile, he's not afraid to crash and burn when the momentum of forward motion stops keeping him upright. He's actually using some of his martial arts training to fall well, just tonight I complimented him on the judo roll he enacted when he fell from being on all fours.

Now see this? I avoid writing when things suck and I'm down, but once I start writing I feel much better, and naturally start thinking more positively. You tricky blog, you.

So, because the gods are cruel and clever, I got a call at work to ask if we needed the wheelchair delivered today. Naturally, the one I picked up on Thursday only rents on a monthly basis. Naturally, he hated the new one right off the bat and we had to go through that whole damned scene again. It's much lighter that either of the other two, which makes my poor old lady back very happy. I still say let's not get too comfortable in the wheelchair, we need to stay motivated to get OUT.

I was encouraged by the speed with whihc the wheelchair came through once it was requested by PT and approved by our pediatrician. I called the PT scheduling desk to see if that approval had been similarly efficient. No one called me back. Yet.

I also sent out a barrage of emails after embarking on a covert email address seeking mission. I'm starting with California, and am cautious to tread lightly so that I don't waste the opportunity of anyone's attention without all the relevant data. The head of the Ataxia clinic at UCLA actually wrote me back a one line reply: "let me know what blood and urine testing was done." Yes I will, good Doctor! I ordered a personal copy of his medical records early last week, so hopefully I'll be able to let her know about that pretty quickly.

So, onward. What I need is a plan. If he is not better by________, we'll do_________.

Who can fill in those blanks?

3 comments:

  1. I love how your mind works, Jacquie. If you were in charge of the world the Plan would be made and stuck to! Or else! Unfortunately, the universe tends to guffaw at plans like that, I'm sorry to say.

    May I sugggest an alternate sentence? Quoting you from Friday May 14? "We'll go with the flow; that's how we roll." Within, you know, reason. :)

    Love you schnooks. To bits and pieces.

    xxEllie

    ReplyDelete
  2. Been thinking about you all day, as per. And I meant to compliment you on your labels. I love your labels. "again with the tests" "bad days" "worry"

    But then "postive thinking"! "bright side"! In my mind they have exclamation marks.

    xxxE

    ReplyDelete
  3. dymphna andersonMay 25, 2010 at 8:25 PM

    So you rock and you roll with it baby!

    ReplyDelete