March 7

Thanks to everyone for your thoughts and kind words. It really means a lot to read all of your messages.

We’re still in the hospital. Sarai has been on the EEG for two days now, she might be taken off tomorrow, but most likely Tuesday.

The EEG shows that it looks like Sarai is having infantile spasms. It’s a very rare condition, a kind of seizure disorder. Once a child has a normal EEG, they almost never develop this, so to quote the neurologist, “This isn’t supposed to happen” They began giving her vitamin B6 last night (they grind up a tablet and we give it to her in applesauce) to try and maybe improve the spasms, but so far that’s not really happening. They’re going to give her another day, and will then begin a treatment of ACTH, a steroid used to treat infantile spasms. The ACTH is administered with a shot once a day, and this course will last 10-12 weeks. We’ll be in the hospital 10-12 days while they monitor her for any complications, and there is a possibility for several. There are a lot of unknowns here… the ACTH may not stop the spasms, she could have side effects, she may have a list of complications from the spasms. The chances aren’t great that the ACTH will be successful and that she’ll begin catching up again with her developmental milestones… but there’s still a chance, so we’re all trying to be hopeful. The good thing that we keep hearing from the doctors is that it sounds like we caught it really early. Responses to the medication are much better when treated within a month of symptoms, and we’re well within that.

Mom’s been here for the past two days, she’ll stay with me again tonight in the hospital and Adam’s going to work. Adam’s off for the next two days.

I pray we’ll have some good news by the end of the week.