Oh, today was so much better.
No seizures. No hospital trips. Our lethargic, crabby child was replaced with an energetic, happy one. We had respite care and worked on the deck. I got a massage. I consumed massive amounts of chocolate.
Really, I'm not sure the day could possibly have been improved upon, unless maybe it included unicorns. Because unicorns are awesome.
But I digress. So Connor is back on the one-seizure-a-week instead of three-seizures-a-day medication until we can get a new medication, one that will hopefully involve no-seizures-a-week, figured out. With any luck this figuring out will happen tomorrow; we'll just have to see. In the meantime I'll be getting us back to our usual routine, albeit slightly curtailed (no trips more than 40 minutes away or so) instead of holing up in the house and hovering over Connor freaking out if he doesn't move for more than five seconds, which is what I have been doing for the past two weeks.
So I think we've reached our drama quota for the next six months or so. Seriously. I'd like to go back to writing about, um, bunnies. Or carrots. Or very small rocks. Or basically any nice, sedate thing that isn't going to involve me having to breathe for a small human being who keeps trying very hard to die on me at random moments. Because I've been writing way, way too much about that lately, and frankly the topic is getting old.
So thank goodness for the quiet, very-small-rock-contemplating sort of day we had today. We needed it.
~Jess
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5 years ago
11 comments:
'Bout damn time. :) I've been hitting the Dibs (my drug of choice) for you guys. ;) Trileptal best do it's magic, quick. And, for the record, I like this new neuro. He's quick! This is Connor we're talking about--the little man is a VIP and should be treated as such. Glad we're all on the same page now. :)
Our Owen has similar seizures to Connor's - though our breathing siestas tend to last for 45 minutes or so, rather than 1 or two. Anyway, I am curious about the way that they are doing the med change. When we change a med due to really frightening side effects, then they wean off and discontinue that med as quickly as possible. However if a med has shown that it helps with the seizures, but doesn't necessarily stop them all together, then they bring on a new med, but keep the old one. Right now we're on Trileptal, Zonegran and they are just bringing on Lamictal. If three stops the seizures, we might well keep all three (If it ain't broke, don't fix it) but our neurologist just says that we have to get the seizures under control first, then we can see about weaning off the one that we though helped the least. Anyway, each doc is different and I'm always curious to learn how they all think because I swear that if you put more than one in a room they would fight to the death in a steel cage match over treatment for the same kid...
glad it was good boring day. Write about anything except gerbils eating their brothers.
I still haven't gotten over that one.
So glad you had a calm day and a massage!!!
LOL at Kristin's comment I think I will have to agree :)
BIG sigh of relief from the Pittsburgh area....
Knock on wood we haven't had one of thoes in a while but for a time he was have 3-4 a day with a break of of about 4 days between them. THe Doc wanted to take him off Banzel but I could see improvments with him being on it I asked for them to pull back on one of the meds he had been on for along time he was also on a very high dose we pulled back and we are now back to having 1-2 every 9 weeks or so. iT seems to be the answer right now but now he has other seizures popping up and they want to adjust for them. As always with our Finny get a handle on the bad ones and then one of the minor ones come out in force.'Hugs to all
Contemplating small rocks sounds pretty good at this point! Adding a massage and chocolate to the day sounds amazing. I wish you a VERY long string of mellow days!
Hoo-ray, hoo-ray, hoo-ray!
wishing you many more small rocks and chocolate!
Julie
Happy, happy boring day! You certainly deserve many of them, all lined up like, well a calendar. I'm hoping your next post is something that involves watching paint dry rather than rescue breathing. :)
Sounds like a great plan: no more seizures, lots of chocolate and a *little* less stress!
Glad to hear you had a so much better and hopefully Connor has no more daily seizures
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