We had a pretty busy day today, spent visiting friends and running errands in preparation for Connor's school year starting up next week. Connor ended up conking out sometimes around 7:30 in the evening, and I actually fell asleep around 8:30 and slept until shortly before our night nurse was due to get here. I'm a bit of a night owl, so that's pretty unusual for me. I'm not sure if it counts as a nap when you fall asleep that late, but whatever you call it I feel much refreshed. Hopefully it won't throw me off of sleep for the rest of the night!
We've got a big meeting with the school nurse and Connor's teacher tomorrow to deliver all of his medical supplies and show them how to do a g-tube feeding. Connor will be receiving three of his feedings at school-- basically all of his daytime feedings except for the last one. It seems crazy that he'll be spending that much time during the week out of the house! While I'm sure I'm going to miss him terribly during the day, I'm also really, really looking forward to having that time to myself. Right now he's slated to go to school five days a week (though he's got a ton of appointments over the next three weeks and will be missing three Thursdays in a row as a result) but we'll cut it back if he's obviously overwhelmed.
This will be a new school for Connor, so hopefully he'll settle into the routine quickly. He's not much of one for change, so I'm sure we'll see a bit of push-back in terms of transition. It will probably take a little while for the new staff to learn his quirks, too. Connor has discovered that he gets a lot of attention very quickly if he slumps over and holds his breath, and recently he's gotten so good at it that even I have difficulty figuring out whether or not he's faking the seizure until he starts giggling or until he turns blue. He's a good little actor, the stinker.
As an interesting aside, this pretty much confirms that he's fully awake and aware of what's going on during a seizure. I suppose, though, that he could have just figured out by trial and error that if he slumps over he gets attention, so maybe it doesn't prove anything.
Anyway, with the vast majority of his discipline issues (and he doesn't have very many, thankfully) I can ignore them or redirect his behavior and he'll quit doing them. This one gets him attention every single time since it's not one that I can ignore on the not-so unlikely chance that it's a real seizure, so I haven't figured out exactly how to get him to stop. Time outs are wasted on the kid, and taking toys away is pointless since he doesn't really want to touch them anyway. Spanking isn't a disciplinary tactic I would feel comfortable with. I used to be able to figure out if it was really a seizure by tickling the bottom of a foot, but now he sometimes still has muscle control of his lower half when he's really having a seizure so that doesn't work so well anymore.
He hates the oxygen mask and when he comes out of a seizure the first thing he does is push it away, so maybe I'll just start carrying a detached mask around with me and putting it up to his face the second he slumps over. It's not really something I can do in the car, but if I could curb the behavior other times with it maybe he'd quit doing it while I'm driving.
If you have advice, I'd love to hear it!
2 months ago