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!