Thursday update

Moriah is having a good day today. She had the longest, most severe seizure I've seen yet this morning about 8:30--the episode lasted 20 minutes. When the doctors came by an hour later on their rounds, I told them about it and they reminded me how good it is that I brought Moriah in so early instead of waiting for many such long episodes. Apparently, lots of parents wait months. Her chances of recovery are made better because we got her care so quickly. That is a grace, that I persisted in following my instincts and making a late-night phone call to a wise pediatrician who directed us to the ER.

We're working to move Moriah's daily injection earlier and earlier each day--today, I will give it at 3:15pm. Best to give it in the morning, as it's going to make Moriah "highly irritable" and difficult to console, and wisdom says it's better to have a crying child during the day than at night. So we're working towards a morning dose. Today, though, Moriah is still her sunny self. She's really begun rolling over on her own quite frequenly now, and in the last couple days of working with her here, I've seen a marked improvement in her ability to reach for a toy while on her belly. So she's still making developmental progress, even as we are hospitalized, and that is encouraging and gives me a sense of purpose and a feeling that perhaps something is (though it really isn't, I know) in my control.

As for me, I'm mostly busy tending to Moriah--washing her bibs in the sink, rewashing her hair (thank you, Michelle, for the olive oil idea--it worked perfectly to get the glue off her head!). Today I strapped her in the Baby Bjorn and took her on a long walk through the hallways. We've done a lot of "play time" today (read: therapy). I've had some time to listen to an online teaching on suffering. I've read some emails and responded to some and fed Moriah's (growing...the ACTH will make her hungrier) appetite.

I'm sad about a lot of things today. I'm mostly sad to think that we're going to lose our sunny Moriah during the next month, trading her personality for a chance at a cure. I pray to God it works, and that He returns her to us in time, well and happy again.