Stick it to the Man

ACTH treatment continued today but both Mike and I got to "take a stab at it". I don't have a queasy stomach and I actually have no fear of needles, but poking my 3 month old baby with a 1 inch needle was really difficult for me. Fortunately, we both did great and hopefully we'll be ready to go home tomorrow and continue doing it ourselves, with the help of a visiting nurse.

Dominic does NOT like getting his injection

We're trying not to get ahead of ourselves or be discouraged, but Dominic has been having on average more spasms the last two days than he had been having on a daily basis the last two weeks. We're no sure what this means, it doesn't necessarily mean that the ACTH is not working. But it's not really encouraging that they seem to be getting worse instead of better. Who knows, his neurologist said it could possibly just be a bad day. We'll see how tomorrow goes. He is currently hooked up to a 24 hour video EEG, so we'll see what that shows. He has also had a couple spells of this new "seizure", if that's what it is. Neurologist says it could be Myoclonic twitches or jerks. Great, that's all we need.

Hooked up for another EEG

It's 11:40 pm and for the past two nights, Dominic has had a "fussy" period from about 9:00 on. Last night it ended at 1:30am. We'll see how tonight goes. I guess we're getting a taste of the irritability...awesome.

Awake and loving the ponytail of wires

We're trying to stay positive, but it just seems like over the past few weeks there has been no good news. It's hard to try to feel like we're doing the right thing when he doesn't seem to be getting better. We're just asking for lots of prayers that the ACTH works and that his spasms STOP.

Working on neck control