Sunday, May 3
Nora had a few episodes over the weekend. They’re very slight and easy to miss. We’re paranoid and suspicious of every movement. She’s a baby. Is that a seizure? Or is she trying to fart? We’ll know soon.
Big day tomorrow; Nora has another EEG tomorrow morning and then an appointment with Dr. Shiloh with UNC Neurology at 11:30. We’re also expecting a call from Duke Neurology.
Two possibilities tomorrow based on the EEG:
- The EEG shows that the hypsarrhythmia has cleared (I don’t know that cleared is the right word; but you know what I’m trying to say. You don’t? Oh, me neither.) Then… I don’t know what the next step is.
- The hypsarrhythmia has not cleared and we start talking about the next drugs. ACTH along with an anti-epileptic are the likely next steps. Then… we need to decide whether we go to Duke or UNC. I think we’re likely to stick at UNC, but we’re keeping both options open for now.
Today, Zoe and I went to see my mom, Gigi, and Nora and Jackie hung out with Jackie’s parents, Grandma and Bapa, in Graham. Gigi has spent nearly every Friday of Zoe’s life with her until 6 weeks ago when she was in a very bad car wreck. She’s on the road to recovery, and Zoe and Nora are surely loooking forward to having her back on a regular basis.
Grandma and Bapa retired late last year and made the traditional North Dakota to North Carolina move. We’re so thankful they were here to keep things going as normally as possible while Nora was in the hospital. Since we came home, they’ve been at the house nearly every day to help with taking care of Zoe or Nora or both. Jackie and I can manage to get the girls fed and to bed, but Nora’s short fuse and amazingly robust appetite make it quite a handful. Not sure how we’d do it without their help, or how to adequately express our gratitude.