Update

We took Christian in to the ER at PMCH last night, thanks to them being booked till March 3rd, (yes, March) and "Urgent Needs Only" booked for several days out. Things have gone downhill so much and so fast, with no medications working, that they wanted us to come in immediately.

We were admitted overnight, and P took the drive between "Up North" and Gunnison for the 3rd time in 24 hours. rough. :(

(thanks Mom S for watching our younger babes for us!)

Christian had a really rough night again. He was completely drugged up: dose of Pheno, dose of keppa(?), dose of ativan. Kept having seizures. Much talk with the neurologists and the dr. gal working with us overnight said the neuro was like "what?? He's STILL having them??"....comforting. :/

He's to have another MRI, which they were hoping to do this morning (poor kid hasn't eaten in a long time.- little kids need to fast for 8 hrs prior to and MRI so they can be sedated) BUT, the first MRI opening is for 5pm today. They ppl working with us are going to see if they can get it bumped up at all, so we'll find out about that here in a bit.

Kid is the sweetest, sweetest guy. He's totally exhausted (and drugged up) so he goes back to sleep right after a seizure. He finally was 'seize-free' from about 3:30-7, and I was able to sleep from about 4:10-7, my extent of rest for the night.

A funny thing: he's all dressed in this cute little mini-hospital-getup. It's pretty dang cute. (and brings out the blue in his eyes! :P) He wanted a bag to put some of his treasures in. I told him we needed to wait 'til the nurse came and then he could ask her. So he was kneeling, playing on his bed and would call out in a goofy voice "nuuuuuurse. nuuuuuuurrrrrrse!" It was super cute. The gal sitting at the desk outside our door was quite enamored, told him she wasn't his nurse, but that she would be happy to do anything for him. :)
He got his bag.

They've been really good to us here and I'm so glad we finally took the ER route, were admitted, and have been able to have him monitored so extensively. We'll be meeting with a team of Neurologists and even the Supervisor to the neurologists later. They're set on helping us get things under control and our little guy the help he needs. Yesterday I was quite the wreck, but its really good to be here and to be getting the help we need.

UPDATE: He'll be having an EEG here within the hour (hopefully) and the dr. I just spoke with said we'll be here definitely another night.

hm. Stinky underwear much? :S

So. This is jumbled, gargled, and completely un-worthy of any literary-feelings-of-pride, but its an update. And I haven't slept. In many nights. So there.