Evan's Journey

I took Evan's Catheter out like the doctor said. So yesterday Evan was not his self he was crying lot, so i new there was something wrong with him. So this morning we got up and Evan couldn't pee. Well Evan is peeing but it's hurting him, and it's a slow stream. You can see his hole is just covered over with new skin. So i called UVA and they said for me to keep the cream on his penis. But you what that's not working i have been doing that. SO tomorrow i will call the doctor that did his surgery and see what he says. I just don't know what they are going to do with him. I'm really getting upset with this. I hate to see my son in all this pain. I hate EB. All of the wonderful kids out there with EB suffer everyday and there's nothing we can do for them. So we need a cure.