Lots going on

I'm sorry I haven't posted since we came home. I know I usually say if I'm not posting, then everything is OK. But this time it's not.

I have just been so busy and overwhelmed that I haven't posted.

Every day her temperature has gone at least into the 92's (92 point something) requiring us to warm her up. Every morning she is not waking up. She will wake up with the ritalin, usually within an hour, but today it took 2 hours.

I honestly don't know why I'm opposed so much to the ritalin. I think it's because I feel like I'm giving her a med to go to sleep and a med to wake up. Something just seems innately wrong with that. But I don't know what else to do.

She breathes fine when she is awake, but when she is asleep she is dropping her sats. So I can't send her to school until I can get her woken up in the morning.

I am working on getting a light therapy box (you know like people with winter-time depression use. It simulates sunlight.) I am hoping maybe this could help her circadian rhythms and help her wake up int he mornings. But who knows.

I don't know if the onfi is causing sleepiness, but it could be. She is only getting half of a pill at night and none in the morning.

Here are the options I have thought of to this point (to deal with the sleepiness)...

#1) Continue onfi and give ritalin at 6 AM every morning (she normally gets meds at 8 AM right before the bus comes. But if I gave it at 6, she could be awake by 8).

#2) Discontinue onfi and see if sleepiness improves. But I do see improvements in her tone, happiness and seizures with the onfi. I would actually like to increase it, but not if it is the culprit of the sleepiness.

#3) Acquire light therapy box and hope it helps. But we took her on a walk this morning in the sun to try and wake her up and it didn't necessarily work. She did wake up a little bit later, so maybe it helped a little?!?!?!

We are still working out what her normal temps are and what is acceptable at home. And honestly I just feel to overwhelmed to even talk about the temps right now.

She is actually doing quite well. For some reason, I am just having a really hard time with this. I just need time to adjust to the new demands of her schedule. (Meaning it takes up a lot of time and energy to check her temp all of the time and then drop everything to warm her up.)

Thankfully my new respite worker has jumped in with both feet and is doing great. And I have had several meals brought in from my ward. Thank you all!

We are also working on getting a bair hugger.