Evan has started school and he loves it. He is doing really good. He does miss some of his friends from last year. But he is making new friends.
Evan just turn 5 on September 11. I still cant believe he is 5. He has had hard 5 years, but he is strong and a fighter. We are going to keep on fighting for cure. So he can be EB free and so can the other kids and adults. Evan wants to be like his friends he don't want the trach or his catheter. But I just keep on telling him one day he will not have it. Evan had great birthday. I got to take him to N.C. where he wouldn't to go. He got to see his two favorite drivers, Dennis, Ryan Anderson, they drive the monster trucks.. Then the next weekend we had him party with his friends. He loved it. He told me this was the best birthday ever.
We have to go back to Cincinnati next month. to see the ENT doctor and see the doctor that did the grafts. I think we are going to do some more grafts. I want to do some on his toes. His toes are so bad.