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.