Wednesday, April 29

Day 2 of the increased dosage on steroids; Nora had two episodes yesterday and two more today. She’s still really hungry almost all the time (we’re conservatively estimate she’s eating >50% more than before the steroids). She’s normally the most smiley in the morning, and she really enjoys being on the move: walks, car rides, anything that includes changing scenery!

Tomorrow, we have our “second opinion” appointment with Duke Neurology at 3pm. Monday, we have a follow-up with UNC Neurology; 8am EEG (sucks) and 11:30 with Dr. Shiloh.

If the increased steroids don’t resolve the seizures, we’ll discuss other anti-epileptic drugs with UNC on Monday; one possibilty is ACTH, which comes with it’s own set of side effects. We’re still probably two to three weeks away from results of the genetic tests.

Sorry for no update yesterday; sometimes it’s hard to figure out what to write, but I should always write: we’re so very thankful for all of your notes, emails, texts, cards, flowers, and food. Thank you.