10/14/2026
💜 Oct 13, 2026 update 💜
I know it’s been a while … SORRY! Life has been seriously crazy with back to school, med chaos, sleepiness, continued seizures, and sports…
The highlights:
-We have had some REALLY amazing Hopekids North Texas events the last several weeks… we went to the fairytale ball, a Savannah Bananas game, a cooking class, and a suite at the Dallas Stars game with other Epilepsy kids and parents! HopeKids really allows Skylar to participate in events in a way that makes her feel special, in a good way 💕 I included a handful of pics, enjoy! We also had so much fun this week with friends at the FW WaterGardens, Central Market and some sightseeing.
-We did a heavy metal test and all heavy metals came back within range. We only tested the basic ones. I think we will explore parasites next? But that’s such an overwhelming road there…
-the EpiMonitor watch!!! Almost forgot… we love it! Still working out the kinks but figuring it out. It alerts us about 20sec into a seizure, which is better than missing it completely. She wears it everywhere and when she sleeps.
The bummers:
-School is exhausting for her, but she loves it! Her nighttime seizures increase at the end of each week and we are starting to think it’s lack of sleep. She gets good sleep every night … “good” is relative… but she gets adequate hours. But it’s not enough hours for HER. Most of her meds are suppressing the central nervous system, causing extreme drowsiness and exhaustion. It also makes her difficult to wake, too. We are discussing a modified schedule with her neurologist but we haven’t really moved forward because that requires someone home with her.
-The new Stiripentol… WELL… My insurance restarts Sept 1 as it follows the school year, and now that her deductible and out of pocket max is back at zero, the new cost *after* insurance for just a 30 day supply is… drum roll… $3,000 - yes $3k… $100 per dose! WHAT COME AGAIN? We tried everything we could but there was simply no way around it. Today I talked with her neuro and we are going to wean the Stiripentol and start a new med called Xcorpi. Not thrilled on the side effects… waiting on cost after insurance for that one. The manufacturer has a copay card we can use so it brings down the cost significantly. Fingers crossed… idk
-We went to a birthday party on Sunday at Urban Air. You know, I used to LOVE that place. We used to have memberships and we went often and the kids love it. However the last 4 times, she has had a seizure and it’s been chaotic. And what do ya know, 20 min into the party her friends come running to me… she had a seizure while waiting to go on the zip line and went head first into the concrete floor. My poor sweet girl. She took about 15 minutes and some ice and was back to playing (with someone hovering over her).
Coming up:
-We will be meeting with the neurosurgeon on 11/3 to discuss NeuroModulation. This would be a brain surgery to put in a deep brain stimulator. I’m torn and it was just brought up again today so at this point I haven’t had the energy to sit down and do any real research. I did request a child-life specialist at that consult just to help calm Skylar and help her understand what’s happening.
-unrelated but still a thing- we are getting an orthodontic consult in November to work on those chompers.
-I also requested a sleep study. I think she has some sleep apnea going on and I wonder if it’s playing a part? I’m grasping at strings.
-We should be hearing from our Make-A-Wish Manager soon… that will be a nice distraction for her especially with the possibility of a big surgery.
💜 I’ll keep yall updated on meds, neurosurgeon discussion, etc
💜 Skylar loves yall!
