Friday, August 16, 2013

Evan has had a hard time lately. He has been fight skin infection, His trach keeps getting clogged up. He has been really sore. We are having good summer, we went to Tennessee for the weekend the kids had great time.
We just got back from Cincinnati for EB Clinic. We got to meet some new friends, and saw some old friends. Its so nice to meet other EB family. Evan had to go to the OR to get his SP Catheter changed out and they was going to see if they could open his penis. They couldn't open his penis it was closed all the way. They said maybe later on they might try to open and put some skin around the penis. But he couldn't do it right now. He was have some other problems with his trach., that came first. The ENT had to look in his airway. Evan had granulation tissue beside of his trach, he had to cute it out. His upper airway has gotten worse. No improvement of his upper airway. He said if Evan didn't get his trach, he wouldn't be hear.
 So after surgery we went to clinic. They want Evan to drink PediaSure the one that has more calories. He needs to gain some weight. he hasn't lost any but he isn't gaining. We are going to try some new ointment and new dressing to see if it will help his neck.
Evan starts school in September he will go 5 days week for 3 hours a day. 

 Cincinnati trip.
 Evans hip that they graft.
 This is Evans other hip.
Evans neck. His neck has been infected so much.