Mayo Trip #1

We successfully made our first trip to Rochester last week! Sam was a very good little boy and the trip went well. Sam had an EEG on Monday morning and a consultation with a pediatric neurologist who is doing a two year fellowship in epilepsy at Mayo, in the afternoon. He spent two hours with us and offered some new information. He was most concerned with diagnosing Sam. He feels that Sam has something other than an autosomal recessive form of microcephaly. He also feels that a diagnosis would help to treat Sam's seizures and give us more information regarding what we can expect for Sam's future. He recommended that we see a geneticist for more information which will send us back to Rochester on Wednesday the 30th. Sam will see an opthamologist on Thursday morning and the chair of the Mayo genetics department in the afternoon. I guess that if anyone could figure out our complex little boy, this should be the woman to do it! The neurologist informed us that Sam's sleep problems are not behavioral, but connected to the underdevelopment of his brain. This was reassuring to us since we have heard from doctor after doctor that they think it is a behavioral sleep problem, even though, Jeff and I continually try to keep a sleep routine in place with no success! We have always felt that there was more to the problem than behavior. We are also awaiting appointments for a sleep study and a behavioral psychologist at Mayo. Hopefully, the sleep study and psychologist will be able to determine the correct plan and medication for Sam. We are cautiously optimistic that we may sleep through the night at our house in the next year! Sam also had an MRI while we were there and was put under general anesthesia. We were very impressed with everyone at Mayo and how smoothly everything works together. Please pray for success with our second trip on Wednesday and for the doctors who are working with us. We appreciate all of the thoughts and prayers from everyone!