EB Awareness week

 

 

Where to start Evan has been doing okay for now. He is in school and loves it still.
In October Evan was admitted in the hospital. He had bad UTI and skin infection. He was on two IV antibiotics and on he had to take by mouth. He also had abrasion he had his eyes closed for 13 days. He missed 3 weeks of school while he was sick.
Then we had to go to Cincinnati to see his doctors. I was worried because he was getting so many skin infection. They really couldn't tell me why. Then we saw the skin graft doctor she said we cant do no more skin grafts because he hasn't heal for m the last one. they are going to try and use pig skin. We will go back to Cincinnati to try that after Christmas.
Evan had good Halloween he wore his costume and got a lot of candy.
Now we are getting ready for Thanksgiving and Christmas. He has made his list for Santa. He keeps on telling me when is Santa coming.

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.

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.

 Waiting for the fireworks.

 

 Evans neck it will not heal.

 

Kids at Chucke Cheeses

 

 

 

 

 

 

This summer has been to hot. Evan sores are so bad. We go back to Cincinnati next month to see all the doctors. Evan is having surgery also, they are going to see if they can open his penis. I hope it works so Evan will not have the SP Catheter.

 Evan at T Ball.

He would not hit the ball.

 

 Evan and his friends.

 

 

Evan got his trophy for T Ball.

 

 

 

 

Evan has been doing okay. Two weeks ago he has skin infection. He had yeast staph strep. He is doing better now. 



 

 

Evan has been doing really good. His grafts are doing better. The one on his hip didn't take at first but its doing better now. His eye is doing better also. I had to take him to the doctor to get the graft around his eye culture. It wasn't doing good. Its doing better now.

 

Evan has only couple more days left of school and he will be out for summer. He will go back to nursery school in September. I'm not putting him in kindergarten. He isn't ready and I'm not either.





 Evan outside. This is day 3 of his surgery.

He had his skin grafts done on is eye.

 

 Evan  in his Son of Digger outfit.

 

 Coming home from Cincinnati.

 

Getting ready to go back to the OR.

He is getting skin grafts done on his eye, and

his hip.

 

 Evan got new truck.

He was getting ready to have surgery.

 

 After Surgery.

 

 At N.C.

 Kids at home playing

 

N.C.

The kids loved the beach.

 

 

 

 

 

Sorry about the pictures they didn't go on right..

 

Evan is doing good. He had surgery on April 29 for his skin grafts, and his airway to be check. They did his grafts on his eye, and his hip. We go back next week to get everything check. His airway has gotten worse. So I'm glade he has the trach now. The eye doctor had to look in his eyes. His eyes have  been close for week. When they looked in his eyes he had bad abrasion in his left eye..

 

 

When the people in N.C. read this we all said hi, and hope to be back soon. Evan loves his car. Thanks for everything.