Updates, finally!

Well, it is official! Jeff and I broke the mold with little Sammy! We received our results from Rochester regarding the genetic testing and everything was negative. We are back to the original diagnosis of autosomal recessive microcephaly. Although we are disappointed with the lack of information we received from our Mayo trip, we are glad that we went. Sam has been having fewer seizures in the last two months, however, he continues to have 3-4 every week to ten days. He has a type of seizure disorder that is hard to control with medication. Also, he can have days without seizures and then have a cluster of them on the same day.

We started Sam on a new sleep med on July 4th which is helping a great deal! Of course, it is causing problems with other parts of his delicate system. Finding the right balance of meds is always a challenge. We also have a night nurse which has been a huge blessing for us! She comes from 10pm to 6am Sunday through Thursday nights. Jeff and I are finally sleeping again in the same room!

We are looking forward to the transition to Kindergarten. Sam has his first day on August 20th. Hopefully, Sam will do well and enjoy a longer day of school. We are so happy to report that he has started to do a little standing again! I think the combination of sleep and seizure control has given him the strength to take steps again! We are so thankful for the return of some of his lost motor skills! We were afraid that we would not see him standing and walking again.

Thank you for the continued prayers and support for our family! We are so grateful for the positive changes that we have seen in the last two months with Sam! Please add Jeff's aunt Sue and her family to your prayers. She was diagnosed with a brain tumor last weekend. She has a CaringBridge page which can be accessed through the link Carson Corner on our site.