no news is no news — sara priddy

I'm sitting here holding Miss Em while I type one-handed. She's playing with my hair. The girls are eating M&M's (okay, so I am too).

We had McDonald's chicken nuggets for dinner because I had a really rough day and Adam is out tonight. Willa said, "This is the best dinner ever." Apparently my home-cooked meal game needs stepping up! Tomorrow looks to be worse than today--I figure I'll be camping out at work tomorrow night to be ready for trial on Friday. Finally though, the doctor called.

Just so you know, we had an appointment with the neurologist June 24th. I thought we'd get the results then. I was naive. Even though the blood was drawn June 6, only 1 blood test and 2 urine tests were back. They ruled out adrenoleukodystrophy and canavan. I called last Thursday and Friday and the medical assistant told me more results were in but they were still missing some. I called again today and the doctor returned my call. All the results are in...except one. The person who input the tests didn't enter that test name correctly so they gave us results for a test that wasn't ordered and didn't give us results for the Krabbe's disease test. It's pronounced krah buh... so you don't have to say your baby has crabs :).

All the results were normal, which means we have no diagnosis. I didn't even realize that would be a possibility until that last neurologist appointment two weeks ago. We do know that she doesn't have canavan, nor adrenoleukodystrophy, nor metachromatic leukodystrophy, nor a mitochondrial disorder (which I didn't even know was an option because he said she had a leukodystrophy). The possibilities are Krabbe's or some other leukodystrophy or cerebral palsy or I don't even know...

We have an appointment in Fort Worth at Cook's Children's on Friday, August 19. I'm frustrated, but it's crazy: the more frustrated I get, the more hope I have too. Emme has made progress since I wrote the original post. She's grabbing things now and that's awesome. She's getting stronger- just slower than she should (she's almost 9 months old, but her developmental age is at about half that). Those of you who pray, please keep praying for Emme (and the rest of us too while you're at it, if that's not greedy). Off to change an Emme poop.

Love, sara