“Can’t read my, can’t read my, no he can’t read my poker face…”

I can’t even believe I have to tell you all this, but we are STILL in the hospital. Sunday night, Dr. James was coming to tell us all the blood work came back totally fine and that we could go home, when we had to share with him that we’ve noticed some possible seizure-like movements. They don’t look anything like what we brought her in for, and they’re not really in clusters lasting a couple minutes like the spasms used to be either. It looks exactly like a startle, and it usually happens when she’s drifting off to sleep. He gave us several options; increase the ACTH, start her on an anti-seizure medication, go home and ask our neurologist on Tuesday, or get another EEG and see what they really are. We figured… as long as we’re here, and we want to be sure before we play around with any more medication, and we don’t want to delay treatment if it’s a seizure or more spasms…. So she’s hooked up to the EEG again, since Sunday afternoon.

I’m afraid to even hope, but there is a possibility that this could just be a startle reflex and not a seizure at all. We’ll hopefully soon find out.

And you know, last time before we started noticing the spasms, Sarai started to stop smiling and cooing. Now, she’s cooing more than ever. She even started to make a new (loud!) noise! It’s too adorable. I recorded her doing it and I play it back to her, I’m not sure she knows what to think. It’s the cutest thing.

So we’re just waiting. I have no idea how much longer we’ll be here, it’s been 19 days already. We could go home tomorrow, or in another week. Everyone here knows I’m done. I think the nurses are nervous and the residents are afraid to come in here. I’ve had it with vital signs every four hours and re-do’s of blood work because of human error. Calgon… take me away!