Hang In There

Good advice. Jordan was told to hang in the hammock to work on her flexibility, so I rigged this one up in the crib. Didn't work -- she was stiff as a board. I wish I could be that stiff when I lay in a hammock, I hate that scrunched up feeling. I think we might have a little better luck once we're done with the ACTH. In addition to the crabbiness, she seems to have regressed a bit. She's inconsolable, can hardly suck, is stiff all the time, and is generally miserable. So are mommy & daddy, listening to her scream, hour after hour. Luckily she seems to scream herself to sleep every-so-often, and we get an hour or so of peace.

And speaking of the ACTH, we met with the pediatric neurologist today. He reports, once again, that her infantile spasms are gone. GONE! He thinks that she is having some myoclonic seizures, and wants to deal with them separately once we are done with the ACTH (after the 3 week weaning process we will start today). He says that they can be controlled with standard drugs. Frankly, I can't tell the difference, as those seizures look like the IS seizures, just more mild. She even had some seizures during her EEG on Friday, but he said her EEG looks good, although it isn't normal yet, and the seizures weren't IS.

Okay, get me out of this thing, NOW! I can be crabby here, too.


It's amazing what hours of inconsolable crying can do to a mother. My nerves are shot and my heart is broken, and I badger Devon all day long "what can I do? what?" It's seems extra hard since I'm such a fix-it person, and not only am I not fixing it, I'm causing it by giving her the ACTH. Hopefully the IS is gone (and won't recur), and we can finish this chapter once and for all. And most importantly, hopefully we'll get the mild-mannered Jordan back. And if we're really lucky, her development take off, that's the goal anyway. So, we're just hanging in there, waiting to see what comes next (and waiting for the screaming to end).

Avery wasn't satisfied with just watching Jordan in the crib, she wanted in & to play (although she was skeptical of the hammock, and I was skeptical of putting her in it, so that all worked out). She has her moments of "Avery is a baby" or "Avery is a little girl," although most of the time it's "Avery is such a big girl." And she is!