Look at me

Well I'm doing better now that I'm off the diet. My seizures are staying anywhere from 80-100. I don't know how the diet was making my seizures worse but it definitely was. We are very sad about this. We really wanted the diet to work. We talked to my neurologist in Boston and New Orleans today. Of course Boston wants us to try Sabril. We have contacted a doctor in Philadelphia that sees patients that are on Sabril. He is a pediatric neuro ophthalmologist. We will probably go see him sometime in the near future. You know my mommy and daddy have to find the best doctors for me. My vision is kinda important though. In the meantime we are going to increase my Banzel. I will let you know how I do with the increase. Developmentally I'm doing some new things. I'm eating finger foods all by myself. I'm also putting weight on my legs. I stood for about 15 seconds yesterday as you can see in the picture. Please continue to pray for me. We really need to get these spasms down. Oh one more very important thing. When my mommy talked to Boston today they said that my CDKL 5 genetic test came back normal. Thank you God for another normal test. They also said that we need to repeat the 3T MRI and long term VEEG monitoring this summer. So we will be traveling back to Boston sometime this summer.