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 19, 2010

Wednesday, May 19

Well, it turns out that better is not all it's cracked up to be. I guess we hung too many hopes on this date, which had seemed so far away for so long. There were two big problems with the Physical Therapy assessment: 1. Jimmy was very wobbly; and 2. There was no vendor there.

The whole reason we had to wait so long for this appointment was that they were supposed to have a vendor present so that we could order whatever equipment the therapist determined that he needed. We originally thought it would be a wheelchair, but more recently thought we were ready for a walker or cane or something.

He had a lot of trouble with the tasks that were being asked of him. Yes, walking is an issue, but who knew he could not stand on his tip toes? Or that his left leg is much weaker than his right?Or that he always looks to see where his feet are when he tries to walk? Or that these things are all really important?

Right off the bat, I felt like an idiot for setting that June 1st goal. He needs a wheelchair, even if he doesn't need it all of the time, he is going to need it some of the time, for who knows how much time. So I'm sitting there trying to adjust my expectations, and then I ask about this mysterious vendor person who was supposedly on the schedule for today, and the PT was like: "Oh, that would have been helpful." When I asked the scheduling office the same question, there was a whole lot of scrambling around and more waiting and it turns out our Pediatrician had called in Jimmy's height and weight to request a wheelchair, but the vendor that our insurance covers replied that they don't make custom wheelchairs.... and so the info just sat in Jimmy's file until I asked about it. Who the hell said we need a custom wheelchair? Standard pediatric would do just fine. Ugh. Anyway, it was good that we hung around to talk with scheduling because before I was done there, the phone calls had progressed enough that we were brought back in to be officially measured, and the PT said that she will write her report and get the order in ASAP.

We've learned that ASAP has an impressive range in these circles, so I also got the number of a place I hope to rent a better chair in the meantime.

Then, to make the whole thing just a tad more annoying, we've only been approved for the evaluation thus far, and although the PT is suggesting two sessions per week, we now need to wait for further approval before we can schedule them. She said that doesn't take long. See comment above about the impressive range of ASAP.


Jimmy is sort of detached through all of this. I don't know if it's not sinking in or if he was just distracted by all of the very interesting things that were going on in the PT room while I talked with the therapist. Or maybe he's just the ultimate zen master and knows better than to fret about these petty issues. He wants to know when he can join a basketball team. I wonder if there are any wheelchair sports leagues in this town?

On we wobble. He's got a cool printed exercise regimen and checklist, he did work hard and it's good to have a plan in motion. Mama's making some phone calls tomorrow. No longer counting on anyone else to follow through with what we need. Duh.

Tomorrow it will be one month.


  1. Well, that is what Mama does best. Make phone calls and make more phone calls and get on peoples' asses and make it happen.

    I like Jimmy's 'tude. You don't need two stinkin' worriers, you know? You've got that covered for the whole family.

    Hope you can get all the PT you need. Really sounds like it will help.

    And how weird about his left leg. And no tip-toe action. And he need to look at his feet.

    Bizarro World, Month One.

    Love you.

  2. boy how absolutely frustrating! these medical folks are somtimes highly overrated - especially when it comes to logistics, as i found when trying to navigate through chelsea's torn ACL a few years back. Yeah, mama's gotta do her thang. seems like a no-brainer that he needs a standard pediatric wheelchair. double duh. throughout this whole fiasco, his quality of life seems pretty damn good, thanks to his mean-ass mama!

  3. Please do not feel like an idiot. You're kicking the crap out of bizarro world. And there are nothing wrong with goals. Sometimes they just need to be adjusted. Slightly.

    The impressive range of ASAP is completely FUBAR, and often requires repeated calls, as you so well know.