I must say...it is much easier to put a kid on a med than it is to take them off. The docs piled on med after med in an attempt to stop the seizures, but when I asked to take her off, everyone said, "OH NO!" After begging, here we are in the midst of the 5 month long wean off of Phenobarbital. We are at the end...but it is still very difficult. Reese had a really strong seizure today and it scared me. Her lips turned blue for a second because she was crying, then seizing, then crying, and wasn't taking a breath. That scared me. It seems to take 4 weeks for her body to adjust to each new level as we take it down and we are going on 3 weeks. So...we are holding on, praying, and watching her closely.
On a happy note, Reese always points me to Jesus. I heard someone say, whenever you start to feel anxious, distracted, angry, say "Father" out loud. Regain your focus--He is in control and He is what the life of the believer is all about. I cannot control my circumstances, but I can control my response. My responsibility is my response. (my sister told me that.:))