We had a great trip to Cleveland that started on Sunday with Ayden uttering "home" within minutes of arriving at the hotel. Ayden had psych eval and EEG on Monday as a part of his routine follow-up for his 2 yr. post op visit. Then, we went back today to meet with a neuromuscular specialist, a new addition to the team. He suggested we start botox along with his current PT/OT. He offers it in Cleveland, but we are going to check locally first before we decide what to do. Our neurologist said the EEG showed expected seizure spikes, nothing remarkable that would cause concern, and added some much needed insight. He went back through all the findings/notes from our very first visit and reminded us that Ayden's seizure have never been exclusive to the right hemisphere. Although his myoclonic jerks (we saw in the summer of 2009 and truly disrupted his life) were stopped by the surgery, we could not expect a seizure free life for Ayden. This was disheartening because I do not like the medicines, but a bit of relief too. We now know that seeing a seizure does not mean the surgery failed or Ayden is very sick really helps me to relax a bit. Although seizures are still not easy to watch, breakthrough seizures may just be happening because of the basic reasons like growth spurts or illness. Dr. Lachwani feels that adding a psychiatrist and behavior therapist may help us to better serve his needs in regards to his aggressive episodes. We could use a bit less screaming and kicking in our lives. We will see where that goes and talk with Dr. Khan about it soon. Our last stop was the Neurosurgeon, Dr.Bill. Ayden does have another screw loose as we suspected, but he said we do not need to remove it until it bothers us (or him) more. He is concerned about some of the speech issues and the lethargy we have noticed and offered to do a new CT, but we again decided to wait. Ayden has had so many CTs and MRIs we want to wait until we are truly concerned about a shunt issue. It was an informative and productive trip overall.
It is so amazing to go back again, each time there are things I remember and it helps me realize how far we have come. Ayden is walking, "running" a giggly hip hop fast walk thing he does, and jumping with a little support. He is very excited about lefty lately and keeps putting things in it as much as he can. Ayden's newest therapist has been a blessing as we have watched his language increase so much over the past few months. He sings songs, says 2-3 word phrases often, engages in hellos(unprompted), and uses some scripted sentences too. We are so excited about all the progress he is making. Go Ayden Go! :)
