A Different Boat

Well Wesley's EEG and neurology appointments went well. His EEG looks the same as it always has which this time seems like a good thing. It's still abnormal, but we're going to call this his normal. That means they didn't see any reason to worry about hard to see seizures. So I can relax a little bit. I now feel like we have a plan for moving forward, I know which neurologist we're going to see from here on out, I have a written action plan for myself and anyone else who watches him, and I am less terrified that he will have another big seizure. With his improved eating, he's gained several pounds. After struggling to follow the curve while staying "below the first percentile" for so long, it is a huge blessing that he is now above the 10th percentile for weight! That also means he rapidly outgrew his dose on his seizure med likely causing the seizures last weekend. So I'll definitely be on watch for that in the future. For now, I'm still hear...

I have no creative title or eloquent way to describe this past weekend. Wesley has always been at risk for having seizures. The damage to his brain from birth is so extensive, his brain doesn't have normal electrical activity. We've done 4 EEGs now of varying lengths which have all shown abnormal electrical activity but have not confirmed seizures. So he's been on and off seizure meds his whole life weighing the benefits of protecting against the possibility of seizures and the significant side effects of heavy duty neurological medications. For the last nine months we've had him on a very low dose of Onfi, a relatively new seizure med with fewer side effects than most. As we've had new appointments and started new therapies, when they ask if he has seizures, we all shrug our shoulders and say maybe. He had never had clear obvious seizures, but occasionally his arm would shake or twist weird or he would zone out for a few seconds making us always wary and never qu...