Since Thursday, Moriah has had a handful of episodes of "startling." She throws out her arms, pulls up her legs, and looks absolutely wide-eyed scared. The starts are brief (just a second long), but within a five-minute episode, she was starting upwards of 20 times. At first, the pediatrician thought it may be something simple (a sleeping issue), but last night after 2 such 5-minute episodes within a few hours, I called again and was directed to go to the Children's ER immediately. Which I did, at about 10:30 pm.
After a long, long night of nearly no sleep, Moriah was admitted this morning to a neurology floor. The fear is that she is having "infantile spasms" or baby seizures. These apparently can be more common in kids with Down syndrome, however, the doctors are not yet sure if this is what she has (perhaps, one hypothesized, it has more to do with her reflux?). So we were moved to a private room for seizure patients, one in which they can hook Moriah up to a bunch of leads (check out the photos...the leads are covered by the stocking, which extends as you can see for nearly a yard and connects to a computer in a small black bag) and watch her on video camera (suspended from the ceiling). They're going to follow Moriah's brain activity in this way for about 24 hours; based on the results, they may determine further tests (an MRI was mentioned) may be needed.
It's hard to say what we're feeling today. Jason is here with me; he skipped church this morning to join me and to give us both a few hours together before the boys come to see their sister this afternoon. I think mostly we feel shock. How is it that this is happening again?! We're not sure, and it's horrifying and all-too-familiar (this living in a hospital room scenario).
I'm not even sure what to ask you for pray for. I'd like to ask that Moriah not have seizures, though I would rather have some answer than none. I'd like to ask that Moriah have another episode within this 24 hours, so doctors can really tell what's going on, but I don't want her to go through another episode, which makes her cry and exhausts her. I'd like to ask for peace, but know that when I'm in shock (as I feel I am today), "peace" is really a false sense of denial and keeping-the-crazy-at-bay.
So friends, pray as you will. We want our little girl to be okay, but we're not sure anymore what "okay" really means, and that is the scariest thing of all.
5 comments:
we are praying for you-I am Nancy Capen's sister and love reading your blog. My girls and I will be praying for Moriah and your family tonight.
We are praying for you and that God will hold Moriah in His hands of protection and that He will guide the doctors with wisdom and knowledge so there can be answers for you during this difficult time.
Emma and I lifted Moriah up in prayer tonight before bed....Know that she is enveloped in prayer along with all of you!!!
We love you all. Let us know if there is anything at all you need or that we can do.
Thinking and praying for you and your beautiful family, Melissa. Carrie Sawyer
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