Natalie’s Day 19 Update: We are on day 19 with no seizures, or any signs of seizure activity. She starts school tomorrow, and that will be a big test for us on how well she is doing. We’re still keeping her off the trampoline and told her not to engage in any hard physical play. The good news is that we haven’t given her any Motrin the last few days. We had tapered down to 200mg Motrin before she stopped. Her incision is healing nicely. Most of the scabbing is gone, with some flaking present around the incision. Her hair is growing where it was shaved so it’s making it significantly less noticeable.
She still gets dizzy after taking her Oxcarbazepine in the evening, but she hasn’t experienced any nausea since we reduced the morning dosage as our neurologist instructed. She wants to lay down while she’s dizzy and needs some assistance if she walks. I’m wondering if reducing the medication down again to 600mg twice daily for a total dose of 1200mg/day is possible. We’ve got a request in, hoping we can do this.
Natalie is excited about school. We also have her first TOP Soccer team meeting on Wednesday Sept 24th. She’s progressing well, and it seems like Angela and I are holding her back more than she wants us to, which is simply amazing. I don’t think we expected this after only a couple weeks.
Natalie plans to share some things with her new class tomorrow, including this picture that she drew: