Journal entry by Sarah Dimon —
Hello!
Things have been up and down here for sure. Anna’s seizure frequency and intensity increased just before Thanksgiving , so we went to BoysTown to get her RNS device turned down as it was likely irritating her brain. This was what I have been fearful of from the start. Not being able to have the leeway to increase settings to get better results was definitely a kick in the face. This is where things get interesting. The following week we get a call and find out there was a glitch in the software and her device never got turned down at all. AND—in fact, her seizure numbers have been trending downward (in a good way) over the past week! So what that means is that it MAY be that we do not need to turn the device down right now after all, and that we may still have some wiggle room to make more adjustments in the future! It’s really inexplicable what happened. I truly feel that all of your prayers are positive thoughts and vibes have made the difference here. THANK YOU! Anna still has a ways to go, but hopefully this trend will continue and her seizures will improve. For now we are leaving the settings where they are. Please keep her in your thoughts and in your prayers—it truly makes a difference! More soon. Merry Christmas friends!!!🎄❤️😊
Sarah