We are going on vacation June 8th. Our whole family is going to Wind River Ranch in Estes Park, CO for my parents' 40th wedding anniversary. We are horseback riding, square dancing, and hangin' out at the dude ranch. We are so excited--I think we'll even get Mario in boots and a hat!!! Please pray hard for Reese--that she will not be affected by the altitude and we will not need to visit the hospital. Doc is a little nervous for us to leave town, as are we, but like he said, "You can't sit around the house for the rest of your life!" So we are trusting that God will protect her and allow us to enjoy our celebration with my mom and dad.
Sunday, June 1, 2008
Reese has had 2 good days in a row. Good meaning the clusters are shorter and less intense. We added the Zonegran back into the rotation and have slowly increased the dose. She is now taking Zonegran, Depakene and Phenobarb. We are to give her Klonapin wafers when seizures are going beyond 20 min. We are hoping to wean her off of the Phenobarb soon. But it seems that we are gaining some control with the Zonegran/Depakene combo. We are not where we want to be--seizure free--but we are down to 4-6 clusters a day, lasting from 1-10 minutes, usually around 5 min. We were at a point, without the Zonegran, where we were seein 7-10 a day lasting from 5-30 min. We are talking to Dr. B. this week and are ready to follow his lead. He is talking about trying Vigabatrin but he may want to stick this out since we seem to be heading in the right direction.
Posted by Kerry D. at 7:26 AM