We had a really neat package arrive in the mail today.Ms. Tilley's ninth grade psychology class in Presidio, Texas sent Jeremy a packet of letters! They did a unit on managing stress and used some of the blog posts as examples in class, and then each student wrote Jeremy a letter. They also made some huge banners wishing Jer well and took pictures of themselves posing with them. How cool is that?
It was neat to get the chance to read all of the letters and see the fun pictures some of them drew. Here's an awesome monkey for Connor as an example. Jer plans to write a letter back answering their questions.
In other news, we stopped by the house today and got to take a look at the progress. I haven't really been able to work over there this week because Connor has been off of school. He's been having some crazy temperature regulation problems since his last seizure-- periodically his left arm and leg will become really red, flushed, hot, and a little swollen looking, and his right arm and leg will be extremely pale and icy cold with blue nails. It doesn't seem to matter what position he's in or what he's doing, and the strange phenomenon lasts anywhere from thirty minutes to two hours. We're not sure what the heck is going on there, but we don't really like it. At any rate he doesn't really need to be out in the cold as it's impossible to figure out a way to keep one side of him warm and the other side cool, so we've had to severely curtail our time over there. It seems that his autonomic nervous system is on the blink or something. We talked to Connor's neurologist and he was stumped. Anybody ever heard of anything like this? It's really weird and we're not sure what to do about it short of making Connor some stylish asymmetrical clothing.
Anyway, so we hadn't been by the house for a while. We went today and they were putting some of the new windows in! The old windows are aluminum and original to the house (which was built in the early eighties) and if you walk up and stand close to them you can literally feel the cold radiating off of them. I tried it with the new windows and even standing right next them you can't feel a temperature difference! This is really exciting as it's going to be so much more efficient to heat our house now.
We'll have a fairly busy week coming up, but hopefully I'll get a chance to get into the house at least a few days next week while Connor is in school!
~Jess
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7 comments:
So you got psychoanalyzed as a school project? Awesome!
I don't see a monkey and it's really bothering me. I'm also curious to hear about what the kids said about how dealt with all you've been through. It really is remarkable how gracefully you've weathered these storms.
Connor's really does keep you on your toes, doesn't he? Would his cardiologist have some thoughts?
The monkiey is in the upper right corner-- he's kind of hard to see. Rest assured that he is awesome, though.
The kids were very excited about writing to Jer, and several of them said that studying the blog was one of the best things they'd done in class so far, which was kind of cool. They all wrote about how they admired Jeremy and most of them put a little blurb in about how they hoped Connor "got better soon." It was very sweet.
We took Connor to the cardiologist when he started having those weird temperature control problems I was so freaked out by a few months ago-- remember, when his feet and hands would suddenly get really cold or hot (but all hot at the same time as apposed to this strange side-dependent thing) and he checked out Connor's heart then and told us it was probably a vasoregulation issue; nothing to do with the heart. If it was just one limb and it didn't come and go I'd suspect a blood clot, but since that doesn't happen it makes sense that this is another blood vessel regulation problem. Which means we can do absolutely nothing about it. We'll probably ask him just in case, though.
Whee.
~Jess
My daughter also has autonomic nervous system oddities, frequently
cold or bluish feet and hot patches in other parts of her body, but I've observed the bilateral hot/cold pattern you're describing, too. Sometimes just in her face, and sometimes face, arms and hands, especially when she is making a huge effort to use a keyboard. In general, relaxing gross motor work seems to even her out best. Maybe after your big move you can look into a special trike for Connor---
that is a staple of my girl's exercise options; even though she can't pedal it by herself, her muscles are being activated and she's moving through space in a rhythmic way that's much more dynamic than sitting in a wheelchair, and seems to help soothe or reorganize the ANS.
I have seen music help balance sympathetic/parasympathetic tone, too.
I second the comment about how gracefully you weather the storms!
Connor has a modified trike, and absolutely loves it! He hasn't been able to use it much this winter because our carpet doesn't allow it to roll well and it's too cold and wet outside for him, but once we're in the new house with the laminate floors it will be a whole other story. Thanks for the tip-- we'll try it out!
~Jess
On the unilateral temp condition - very unusual, but you received some good response. Initially I was thinking circulation also.
Then I thought to suggest that the Dr. Neuro think in terms of the places where neurons crossover from one side to the other. (Not gonna try to explain what I mean here - just mention it for your use.) Barbara
The kids were super excited to see their letters on the blog. They're pretty much convinced that they're famous now!
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