When we spoke to the nurse at Cleveland a few weeks ago the plan was to stay on track with our local neurologist's plan. The hope was that we would see the seizures disappear. Today, we met with our local neurologist and I showed her the seizure footage from the truck on the way down to the appt. We have very little room left on his current meds and we have seen seizures return on a daily basis a few clusters a day. When I talked to the nurse at CC I asked the inevitable question about 'What we do next if the seizures don't go away?'. The explanation I was given was it is a three step process: A - Try meds, B-Testing/Evaluation, C - Surgery. I absolutely love Dr. Khan as she is so easy to talk to and down to earth. She said there really wasn't any reason to prolong the process and that it was time to go back to Cleveland for testing. She said it is important to remember if he is not a candidate for another surgery we will continue to explore other options. However, if surgery is again an option we really need to consider it. After we left her office I called Cleveland, and spoke with our Neuro's office there. A nurse called to confirm my message and said she would see what Dr. Lachwani wants to do. So we will wait and hear something next week. We know other Hemi families that have had another surgery after the initial surgery (anatomical after a functional hemispherectomy), so this is not a total surprise. While Ayden's seizures are mild right now, we have to think about what the seizures are doing to him, especially long term. Dr. Khan was talking about how Ayden is so sedated by the medications today as he was leaning against me and let out a big ole yawn at the perfect moment...Such a ham! No matter what the circumstances Bubba can charm anyone!
So there it is...the answer to "How's Ayden doing?" :) There isn't much we know right now, but we are dedicated to giving Ayden every opportunity to be the best he can be.
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