• Home Again

That’s Nora during the ride home. Let’s talk about this picture:

  • She’s wearing Zoe’s sunglasses because her eyes were dilated and tested earlier in the day. Zoe was certainly a little incredulous when her sister came in wearing her sunglasses.
  • Those dots on her forehead are where the electrodes were placed to monitor the electrical activity in her brain. Those damn things were glued to her head; they dried the glue with compressed air. Nora hated having them put on, and she had it done twice during our stay (they had to come off for her MRI). Also, before they put the electrodes on, they measure and mark her head with a grease pencil. First person used a green pencil, which is a good color to use… because the second person used red. I walked in on the middle of that one and thought that she was implanting them.
  • Blowing a bubble – why the hell not?
  • Outfit from the TEA collection (which I think stands for totally expensive apparel)

We left the hospital around 5:45. Home just in time for bath and for both girls to completely lose it (Nora just wanted to go to bed, Zoe just wanted bubbles). Both girls are sleeping soundly and we’re just so happy to figure out normal again.

Nora is on a heavy dose of steroids to attempt to stop the seizures; the neurology team at UNC said that for symptomatic infantile seizures, steroids are effective 40% of the time. If the seizures don’t stop in the next week, they’ll increase the dose for an additional week to give it another push, and then begin weening her off of the steroids. By that time, we should have the results of the genetic testing back and will be able to get a more focused drug for Nora’s specific diagnosis (again, to be determined).

She’s taking other drugs to specifically address issues the steroids introduce: prilosec, calcium, and vitamin d. She’s also taking b-6 and folinic acid to aid with neurotransmission. As the pharmacist said, “that’s a lot of drugs.” Yep.

Earlier today, we were worried because it had been a few days since Nora’s last BM. But then she pooped all over me. As Zoe would later say, “silly Nora.”

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