• Friday, May 15

Today is the eleventh day of Nora’s wean off of steroids. After we left the hospital, she was on 40mg/day for a week, then another week at 60mg, after which we had the good EEG that showed the hypsarrhythmia had resolved.

We began to wean after that appointment; 5 days back at 40mg, 5 days at 20mg, and today is her first day at 10mg, which she’ll finish next Tuesday. During that period, we also ramped her up onto Topamax. Starting today, she’s at her full dose of Topamax and will remain on that dose indefinitely.

Two appointments for Nora next week: a follow-up EEG on Thursday with a visit to her neurologist, and our first visit with the genetics team on Friday.

We’re hoping that the EEG will still show positive results after a couple of days with no steroids – she hasn’t had anything that looks like the infantile spasms that took us to the hospital in the first place, but the EEG will be definitive.

Nora is still on some other vitamins that should be helping with neural transmission, and we’re keeping her on those for the time being to keep the equation to a single variable – we’ll probably plan for those to come off after spending more time without the steroids.

Nora’s appetite has appropriately decreased as we’ve weaned her off of the steroids, but sleeping is tough. She’s consistently up 4-5 times a night; Jackie is the only one of us who is good at soothing her. Because of her appetite, we’ve had to supplement her feeding with formula, which gives her quite a bit of trouble with constipation, so she’s pretty upset in the afternoons with it’s time to go. Her cry goes from 0-60 faster than a Tesla, and Zoe quickly covers her ears before saying, “it’s ok Nora!”

But, her mood is definitely getting better. She’s starting to enjoy baths again. She’s making lots of noises and gnawing on her hands and the occasional toy regularly. She’s also pretty strong, and she’s getting good at assisted sit-ups (better than me, probably). We have a referral with an occupational therapist and hopefully an appointment soon to get a better assessment of those things and plan of action to keep it going.

Most likely, we’ll transfer Nora’s primary care over to the specialy pediatric clinic at UNC Hospitals; with all of the medicine and other things going on, we’ll need folks very familiar with her and her care to help guide us through things like vaccinations. That appointment is in a couple of weeks.

Long email with not too much new information – and we’re just fine with that! Will email again after next Tuesday’s EEG.

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