Wednesday, June 3

Nora is still seizure-free. She’s completely off of the steroids and on her full dose of Topamax. She’s been sleeping through the night and back to a fairly regular napping schedule. Baths are fun again.

After bulking up on steroids, Nora actually lost a pound over the last couple weeks. She’s back under 20lbs (but still wearing 12-month clothes). Aside from the weight gain, the steroids also made her fairly swollen, and now her skin, and especially her cheeks, don’t feel as tight. Her weight gain may delay some physical milestones, but she’s really trying to roll over. Those legs and arms are so heavy!

We had a visit today with a pediatrician at the complex care clinic at UNC, who talked to us about ongoing care, vaccinations, food, etc. Now that we’re two weeks removed from the steroids, she gave the green light to get back on track with vaccinations, and Nora will be right back on schedule for the next round due when she’s six months old. Nora also had her first visit from an occupational therapist, who thinks that Nora’s is right on track for a four-month old. We’ll continue with those OT visits biweekly to make sure she stays on track.

The Topamax is a struggle; it comes as sprinkles that we’ve been giving with milk, then cereal, then apple sauce. None of it is easy, and she gags on the food because, you know, no teeth [1]. Yesterday, we got the Topamax as a suspension, and that’s been a bit easier to give her through a bottle.

One side effect of the Topamax is heat sensitivity; we’ve noticed that Nora heats up very easily, even when we’re comfortable. Another is sedation, and it does seem that Nora is a bit more tired than normal, but alert when she’s awake, doing lots of coo-ing, reaching for toys, rolling over attempts, etc..

Thanks again for all the kind thoughts and words of encouragement.

[1]: according to Zoe