Friday, October 30, 2009

St. Paul Children's Epilepsy Unit Update





Hello, I finally got a minute to update the blog! We have been in St. Paul since Monday and plan to be here through the weekend. Sam got hooked up to the EEG on Tuesday afternoon and has been absolutely amazing! We are so proud of him. He will remain hooked up to the EEG as long as possible so the Doctors can continue to monitor his seizures while medication changes are made. He had over 100 seizures during the first 24 hours he was in the hospital. We are definitely glad that we made the trip!

Sam had a tougher day yesterday. He has a bit of "cabin fever" and the EEG leads are getting itchy since they are super glued to his head! Sam often bangs at his head when he is in discomfort, so he will be fitted for a soft sided helmet while we are here. A new medication was started yesterday too, so we will see how he does today. We are less than thrilled with the side effects of this med, but the doctor feels that it is the best choice for Sam.

My parents and Jeff's mom are here with us and we are so blessed to have their help! We appreciate all of your prayers during this challenging time and we also know that they are working because Sam has been such a good boy!

Wednesday, October 07, 2009

Seizure Update

I thought I would share the latest info on our next step for Sam. We will be traveling to St. Paul for an inpatient visit on Oct. 27th. Sam is scheduled to check in at St. Paul Children's Hospital at 10am on Tuesday the 27th. I have attached a link that tells a bit about the epilepsy center at Children's. We will plan to stay a minimum of 2 days with the possibility of up to a week. Sam will have a 24hr EEG and see a pediatric neurologist during his stay in the hospital. It will be quite a challenge for us to be away from home, but hopefully we will get some good information to help treat Sam's seizures.
http://www.childrensmn.org/web/services/035705.asp

Sunday, October 04, 2009

Sam has ear and sinus surgery at Avera Mckennan

After a tough summer and fall, we finally got Sam in to have surgery on his ears and sinuses! He struggled with infections all summer and after four different antibiotics and countless trips to see his doctors, we decided it was time! He had surgery to replace his ear tubes, clean out fluid found in the middle ear, cut out adenoid tissue that had regrown, and he also had a sinuplasty http://www.youtube.com/watch?v=x7WlyWTFWrc(balloon procedure to inflate the sinuses.) His seizure activity has also dramatically increased since June. He has averaged up to 60 seizures daily. We are hoping this will decline once he is healthy again. We are planning a trip to Minneapolis in the near future to once again try to find a doctor that can help control his seizures. Also, we did some more genetic testing in September which resulted in no new information. We were discouraged by the results, but will continue to search for a diagnosis for Sam in hopes that we will be able to better treat his complex seizure disorder. As a result of the chronic infections and seizures, we have seen a big decline in his motor skills and ability to bear weight on his legs. I will try to keep the updates coming. Thanks for continuing to keep Sam and our family in your prayers.

Saturday, October 03, 2009

Augie Football Fun!





We have been having fun watching Augie football this fall! Go Vikes!