06/02/2026
Here is an update on our friend Alana! God is good! Thank you for your prayers and concern! Please keep them coming!
We had Alana's two week follow-up with her neurologist, neurosurgeon, and NeuroPace (the company that makes and manages the device).
Neurosurgery was very happy with her progress, said she was healing well, and was able to remove the sutures. Forty-six of them to be exact! Alana tolerated it much better than we expected and it went smoothly for all accounts and purposes.
Neurology & NeuroPace were satisfied with how much data they were able to see from the device over the last two weeks, which included 30 seizures, and they delivered some "test pulses" in the office. Basically, small bursts of electrical stimulation to the electrodes in her thalamus, to see how she tolerated it. She didn't show any sign of discomfort or have any immediate "side effects" so that setting "0.5" is her current RNS setting! That means the device is now on and working, and delivering a low level of stimulation to her brain when it detects seizure-like activity. This, over time, will help shorten, decrease intensity, and stop at least some of her seizures!
One interesting thing during the appointment was to see what her seizures "look like" to the device. At the thalamus, deep in her brain, the seizure activity is remarkably symmetrical. This was further confirmation that she definitely has generalized epilepsy, and that the correct surgical decision was made!
I'll post a "head update" picture tomorrow, but for now we are home from Orlando and ready to relax for the evening! 😁
