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.

Friday, May 28, 2010

Friday, May 28

The start of summer sure brings mixed feelings this year... although there are a number of cool sand-friendly wheelchairs available to borrow at the beaches, it's not going to be the same with Jimmy unable to swim, boogeyboard, or even just run around. Hopefully that won't be the case for long, but it's feeling less likely that his situation will improve significantly in the near future. As for the immediate future, we're going to stick to pools this weekend.

Physical Therapy was hard work for him, but he is willing to try anything and doesn't complain (until we get home). The therapist who saw him for the eval last Wednesday worked with him again, and it must have been a shock for her to see how things have changed in those few days. We've been through these ups and downs --- well, a lot of downs and almost one week of ups --- but she had only seen him during that fleeting "up", so she got a real look at what we're dealing with.

I scheduled his remaining 5 authorized visits - she is not at all concerned with the issue of extending them, we'll do that after the 3rd visit. We'll be tehre on Tuesdays and Thursdays, and I initially tried to work around what was convenient for us and did not require missing school, but I got a call later that evening to change some of the later appointments we'd made because after consulting with the doctor, she wants Jimmy one-on-one for each hour long session, and she wants to be the only one who sees him. I'm glad that they are paying attention, heartsick that my boy needs such specialized care.

He was exhausted last night, the PT said to imagine that he'd spent the full hour doing jumping jacks, because that's how hard his body is working just at the simple simple tasks she set for him. We were encouraged that just with the techniques and coaching she offered during that hour, he was better able to stand with support by the end of the session, but we're still not anywhere near ready to size him for a walker.

As for me, I'm feeling very antisocial with people. I almost want to avoid seeing people because I'm tired of blah-blah-blahing about all of this all of the time. It's hard to switch gears when I'm at work or at the gym or out shopping and someone stops me with questions. I want to welcome them, there's a part of me that wants and needs to continually talk about this thing that is always right at the tip of my consciousness, but I guess I just need a break sometimes. I have a hard time answering techinical or medical questions, especially when the person asking clearly knows more than I do about the subject. I've got trust in his medical care - not blind trust, but trust nonetheless. So if I am unable to answer your questions about which tests have been run and what the exact results were or what the doctors' opinions are, it's not because I haven't been paying attention, it's just that with so many details and emotions jumbled up into the mess of these last five weeks, I can't always come up with specific information. Once I have those medical records in hand, believe me you are welcome to review them. In fact, I'd very much appreciate it. In the meantime, let's talk about other stuff, okay?

Have a great weekend, everyone!


  1. You're so right about needing to let the doctors handle it. I mean, it's good to be informed and on top of things (which, of course you totally are), but also along with that, you need to trust the medical professionals and kind of let them do their job. You'll just go crazy if you don't. You already have an important job--you're his mother and his advocate. Taking on their job (which would require another decade of specialized education) just is too much.

    People mean well with the questions. And, it's kind of awkward for them, too. I know that when I'm around an acquaintance who is going through something significant, it's tricky... I know that they're probably sick of telling the same story about whatever happened ten zillion times to ten zillion people, so I feel like I'm bugging them by being number ten zillion and one. But, I feel like if I don't say something, then it'll seem like I just don't care and am just heartless and cold, ignoring the elephant in the room. So, then I find myself just avoiding the problem completely by avoiding the person, waving cheerfully from the other side of the room and then scooting out the door as quickly as possible, which is probably worse than the other two combined, because maybe they'd like to vent or just be around people without talking about whatever the situation is.

    You should like practice some standby comment when you don't feel like talking about it, if you haven't already.

    In the meanwhile, hugs and still best wishes, and I'm telling you, if all else fails, put him in the chair and push him down a big hill in Switzerland. Kidding! Just Kidding!

  2. Thanks for filling us in Jacquie. The blog is good and perhaps cuts down on the amount you have to repeat. Trust your instincts as well - mother's have uncanny ones, don't ever ignore them. Wishing you better days ahead, still in my prayers. HUGS to all of you. <3

  3. Hang in there Jacquie, I know its excrutiating (i dont know if I spelled it right but you know what i mean) As i read I'm reliving some of the moments i've had in the past with the girls, and although its not the same situation by any means, I feel like I can so identify with what you say youre feeling.

    I want you to know how much I'm with you in spirit, and I'm praying for you and jimmy. Have a great holiday weekend!

  4. Jacquie, I know exactly what you mean. It took me a long time of dealing with friends, acquaintances and students who have something going on in their life before I learned what to say. Usually the affectionate comment, "Wow, this thing really sucks sometimes, doesn't it"? shows them that I really care about them, but I don't expect any kind of explanation or even chit chat. Anyway, this is just my weekly check-in. We're with you .

  5. Let's talk about peanut butter and tuna fish instead!

    Oh, wait, you hate them both: let's not. Plus we already have, elsewhere.

    Great analysis, as per.

    I do not need a medical record to know I love every one of your guts.


  6. No, no, no, cream cheese, Ellie. Jacquie LOVES cream cheese.

    I completely get where Rita is coming from above, because you want to be a good friend, but don't know whether talking ataxia or cocktails is more appropriate at any given time. I'm sure you need both. Maybe we should get you a little double sided sign, like in hotels, but yours would read something like "wobble" on one side and and "other stuff" on the other. lol.

    It may not give you much comfort, but you're doing a fantastic job in a very, very difficult situation, and providing an incredible model for both of your children.

    love you,

  7. I love the "wobble" and "other stuff" sign. That's a riot. Oh, Jacquie, it does just suck.