• Father's Day

Father's Day

Nora has been seizure-free for two months and one day. She’s taking her Topamax twice a day, Prevacid once per day, and generally does fairly well with those. Since our last update, she’s weaned off of the Leucovorin and B6 prescriptions, which were to help with neuro-transmission.

The Topamax makes Nora pretty sleepy; she takes 3, sometimes 4, naps a day. She’s also overheats pretty easily thanks to the medicine, so we’ve been staying inside. In spite of all that, Nora is very happy and gives great smiles. She makes lots of cute baby noises and is ticklish (with the occassional giggle). Today, she went for her first swim and did a good job kicking (better than her sister, in fact).

She’s had a few visits with physical and occupational therapists. Nora is slightly behind physically; her muscles are less developed that they’d like, so we’re working on tummy time and assisted sitting. Occupational therapy will continue to come every other week, and physical therapy monthly.

We have neurology and opthamology therapy visits coming up in July; neurology is most likely just a check-in, and perhaps increase medication based on her weight (but she’s lost a couple pounds post-steroids, so probably not). Opthamology will do another physical examination (last one was in the hospital) to make sure her eyes are developing as expected.

Jackie returns to work tomorrow; we’re thankful that she had the flexibility to spend time with Nora over the past two months while we recovered from the infantile spasms sucker punch. I’m nervous, she’s nervous; we’ll figure it out.

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