We keep our house relatively chilly in the winter time for a couple of reasons.
The first reason is that we don't like spending money on frivolous things like comfortable indoor temperatures when we can just throw about eight blankets on instead. Turning our heat up above 62 degrees or so would seriously cut into our coffee shop and book funds, and as we all know those are necessities that Jeremy and I can't possibly live without.
The second reason is that our kid overheats at a ridiculously low level of activity because he doesn't appear to have functional sweat glands. It's a heck of a lot easier to take a layer of clothing or two off of him to cool him down rather than changing the thermostat all of the time. Since when he overheats he starts having massive seizures, the ability to cool him down quickly is rather important. And since the bags of frozen peas are now reserved for icing my numerous roller derby-inflicted bruises, we just keep the house cool instead.
If it were up to the cats, though, it would be a bazillion degrees in here, I swear. You would think that their nice thick winter coats would make them all warm and toasty, but apparently not. Today was one of the first really cold and wet days of winter, though, so I turned on the fire and let it get up to a steamy 65 degrees. This was Cricket's reaction to me turning on the fire.
Really, Cricket? Aren't you being just slightly melodramatic? It's not THAT cold in here.
Because it was pretty nasty outside, when we drove out to physical therapy I had the heater going full blast and Connor was dressed in his fleece coat. For some reason, however, when we got to therapy suddenly the whole upper half of his body was freezing. He has those weird circulation issues, but normally they're split vertically; the left half of his body will be cold and the right side hot (or vice versa). Well, today apparently all the blood decided to hang out in his feet, because his face and hands became extremely pale and icy and I was a little worried he was going to pass out-- he kept trying to fall asleep on us. So instead of PT we wrapped Connor up in a blanket like a burrito and he had a 45 minute snuggling session while we watched him like a hawk to make sure he wasn't going to start seizing or something.
The weird temperature difference faded as mysteriously as it began, and by the time we were supposed to do speech therapy and occupational therapy (we had a joint session scheduled for today) he'd perked up quite a bit. Mostly he perked up enough to sign that he was ready to go home, and he rejected all of his favorite toys-- at least until another child came into the room for her therapy session and started playing with them. Then suddenly he wanted all of them back. Also he didn't like the girl and her family, and he wanted them to leave. Now. I'm pretty sure he didn't actually want to play with the toys himself, either, because he was still signing that he wanted to go home. He just didn't want anyone else to play with them.
Not the most productive of therapy sessions.
Anyway, we got home and he had a couple more of those weird freezing/pale episodes, which is the other reason why I ended up turning the fire on and also messing with our thermostat-- much to our cats' delight. And I wasn't really surprised when Connor had a massive seizure late in the afternoon, and I had to use the Diastat and then he spent the next hour curled into a miserable ball on my lap intent on covering every single inch of my shirt in tears and snot. I kind of figured the odd episodes earlier in the day were leading up to some culminating event like that. He finally calmed down enough for me to put him to bed, and then the little guy fell asleep in about five minutes. Hopefully he'll sleep through the night and have a better day tomorrow.
On the plus side, I did manage to make it to the bookstore and the grocery before all of the weird-temperature-and-seizure fun, so at least I was well supplied with books, tea and Cherry Garcia ice cream to help me recoup from the day.
You know-- the essentials.
~Jess
5 years ago
7 comments:
What a day- I hope the temperature regulation issue doesn't come back in that form again. And more seizures! What does the neurologist think? Sending hugs in your direction- for you guys and for the adorable Connor.
Sounds like a very interesting day! The temperature regulation sounds a bit tricky! Hope things are quieter for you guys (although Cherry Garcia will be a big help if they aren't quiet!).
This is very scary, Jess. Thinking about you guys.
I'm glad the cats are happy they are sweet cats.
Hi All,
I'm Jo, Connor's Caregiver. I have been in contact with Jess and wanted to post on here that while Connor is okay, he unfortunately has had four seizures today and had to be taken into the hospital for observation. At this point we know they will be there for one day at least but do not know why the seizures have increased so of course we are on standby. Connor is ok just cranky from getting IV's and Jess has had about enough of "barbie videos" that keep playing over and over again. :) Jess will be back to her computer as soon as possible! Thanks to everyone for their support!
Thanks for posting Jo. It's worrisome, but better than not hearing anything.
Hoping you guys get home fast. Hospital TV is a special form of torture.
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