and then...

We ended up in the hospital. Last Wendesday ( and yes we felt that darn earthquake )at Alex's nuerology appointment he started seizing. Thank goodness his DR is adjacent to Childrens hospital in Akron. They transported him right into a room and attatched a video EEG while he was seizing. From 5 until 9 , alex averaged a seizure every 4 minutes. At about 9:45 he developed a seizure that he could not come out of on his own. We gathered some valuable information during that time! Its the worst feeling in the world to see your child's body being racked with seizures but on the flip side , its exactly what we needed to have happen . I would like to have his EEG have shown some different news but it didn't . When he is seizing , it is all over his brain, not localized to the left or right. These kinds are much tougher to treat. We are now using a medication similar to Ativan , called Tranxene , to help regulate these "thunderstorms" in his brain. Its really more of a tranquilizer , but he has reacted well to it. We are down to 1 seizure a day so far... if by some miracle that holds true that is tremendous!! Some of you may be asking ... a tranquilizer? yes shockingly so! When he has gone into the seizures in the past, we have used Ativan in his IV to snap him right back to us. It works by decreasing unusual brain activity. After seeing Alex's EEG during a seizure , there is a huge amount of that happening. In fact , he seemed to be the talk of the nuero department as they had never seen such an incredible reading of brain activity . One doctor said it was like having a category 5 hurricane inside Alex's head, or a 9 or 10 on the Richter scale .
I know I need to take one day at a time with this. Alex's seizures are sneaky and sudden. He has strict orders from his nuero to do nothing unsupervised at this point. But having stayed on the 6th floor of the hospital for 3 days , I am humbled . There are so many other children with just devastating diseases and conditions. We will be ok , Alex will rise from this. The young girl next to him passed away while we were there and that was a an eye opener for Alex. He wept and prayed for the family. They filled the halls sobbing and it was almost more then I could take, my heart overflowed with what they must have felt. ahh yes.. I am humbled, overwhelmed and so very greatful for all my friends calling, emailing and praying for Alex.