Thanks Casey, I'm going to email you. We was up in Cincinnati in July Dr. Azizkhan open him up and he said he would hope this would help. It is all scare tissue. We do use and Steroid cream on his penis. I talk to Dr. Azizkhan on Friday and he said that he wont to but a catheter in him for 3 weeks then take it out and see how he does.
Evan is doing good right now. His skin is looking good. He is feeling good. He can pee right now. He still not eating but he will eat when he gets hungry.
Thanks Blamca. I'm going to post it on the EB page i just haven't done it yet. I have talk to people on face book about his peeing. They have told me what to do, but we have done all of that. The doctors just cant believe he is closing up like he is either.
Hannah goes in Friday for and upper Endoscopy. So i hope everything turns out okay.