A little miracle occurred today! I got to give Averie her first dose of EPI-743!!!!! After months and months of waiting, many emails, several discussions with doctors and a very very long 20 hour drive it finally happened!
Averie is currently in her 2nd pentobarb coma and will stay that way until Friday. She is resting...her brain is resting and I'm hopeful it will lead to positive results. Everything moved so fast yesterday and I feel like this was the best move that could've happened. The team here doesn't mess around and things are getting done. I don't know exactly what we will do the next couple days...maybe explore San Fransisco or take Ellery to the beach. Unfortunately the situation here for staying bedside with baby isn't a reality. We'll have to tag team the baby so someone can be with Averie. Since Averie's dad will be here too I'm thinking i'll make sure to get outside and enjoy the summer weather :)
I feel so blessed by each and every one of your prayers, your words of encouragement and the offers of support. Averie is so blessed to have so many who care about her! I feel the love and the optimism! Keep it coming! Please pray for her over the next few days...pray nothing goes wrong while in the coma and pray when she wakes up her seizures have stopped and pray that the EPI-743 drug works its magic over the next few months!