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, June 2, 2010

Tuesday, June 1

We left the house at 8:45 am yesterday, and got home at 9:45 pm! No time to update. For the record, we give the new Karate Kid remake two enthusiastic thumbs up despite the fact that we didn’t get homework done and everyone in my family was a big heavy grump this morning.

Bill came along to PT for the first time, which lightened the mood a little bit. Jimmy acts so differently there, I know this particular therapist was recommended for Jimmy’s specific case, but I sometimes wonder if a younger, sillier PT would get more out of him. He complained that she talks to him like a preschooler, and I told him that if he starts to acts like himself, she will get to know him and they can have more fun doing things that are geared toward his interests and abilities. She had him up and walking more than any previous session, using the walker with a belt around his waist so she could support him. We might take the walker home with us this weekend for practice.

The movie was an advance screening with the gang from our Karate dojo. It was the first time Jimmy had been around these kids since this whole mess started, and it was a little awkward. It hadn’t occurred to us that the kids would have no idea why he hasn’t been to karate, so they were surprised to see him in the wheelchair and were quick to ask: “What happened?” Of course, there’s no quick reply to that. He’d go into this “um, well I can’t really walk because I lost my balance” or “I have cer-a-bel-axia or something.” I still think he needs to come up with a better story, something interesting that discourages additional questions, like: “I fell from the tightrope” or “I’m waiting for a butt transplant.” Any suggestions? I overheard one little girl telling her parents: “you know that kid Jimmy? He’s in a wheelchair and the doctors don’t know why!” Ugh. I’m going to send an email over to the dojo later to explain a little bit more of the situation so that they can answer questions.

So this morning he was impossible to get out of bed, and he was just a mess of tired. He begged and pleaded to go back to bed, he said he was too weak to even go to the bathroom, he was completely woebegone. Of course, I start to worry that something new is going on, his muscles are degenerating or he’s developing one of those horrible diseases that they tested him for. I made a plan in my head to call both docs and ask about repeating tests, etc. Then I sternly told my boy that I was not staying home because he was tired, so suck it up. Once he got dressed, we had 10 minutes so I suggested that he take a power nap before we left for school. I stopped running around and tucked him in on the couch and rubbed his forehead and spoke softly. He closed his eyes for those 10 minutes, and was miraculously restored. It’s very difficult to distinguish between the typical behavior of an 11 year old boy and the manifestation of a neurological disorder. They are mutually exclusive.

We are awaiting a replacement wheelchair and copies of his outpatient records, which were not included in the first set I received. On we roll.


  1. Love the update, I missed it so yesterday! On you roll, indeed.

    Wheelchair slowing you down? Hell no, a 9:45 pm home arrival?! I'm in awe. You crazy, girl!

    I laughed out loud at "butt transplant." You funny too.

    I'm thinking hard about a good, quick, one-line reply for Jimmy...thinking.....

  2. It’s very difficult to distinguish between the typical behavior of an 11 year old boy and the manifestation of a neurological disorder. They are mutually exclusive.



  3. Oh, God, I can just imagine the telephone-game communication going on between Jimmy and his friends and their parents. Ending up, of course, with an embarrassing Ferris Bueller-type extravaganza in Jimmy's honor at karate. You need to act on that quickly.

    Katie comes home with the most outrageous things, like last year when she told me that Emma's mom had to have a heart transplant. Turns out Emma's mom had a heart infection and was on a series of antibiotics for a very long time. Or after the snow-tubing field trip, the one kid fell, hit his head and had Indonesia for a couple of minutes and was ambulanced to the hospital, where they deemed him fine and sent him back to school where he had to sit at a desk in the library by himself, working on math sheets for the rest of the day. Turns out he bumped his head and had some momentary confusion and his parents came and got him. The stories are remarkably more interesting than the truth.

    Anyway, I don't know what snappy answers he can give. Does he have any ideas? I bet he and Clara could come up with some great ones.