74 Days since Evan had his skin graft on his right eye lid.



EB AWARENESS WEEK

 

 

 

I had to take Evan to the doctor today. He has another UTI. He has been feeling so bad this week.

Evan playing with his blocks, with his eye close.

 

Evan got his eyes open.

So Saturday he got to go to the pumpkin patch.

 

Evan's eyes are doing better. When he gets up in the morning they hurt him. So it take awhile to get his eyes open.
Monday we had to go to UVA to get another catheter. After surgery he was upset and hurting, I thought he was having some spams. He got worse and was really hurting. So the urology came in and try to fix his catheter. They couldn't get nothing out of it. he said we will have to take him back in the OR to fix his catheter. So they told me to take the bandages off and he was going to pull the catheter out some. What happen was the catheter was in to far. 

Evan has had hard couple of days. His eyes are bad again. He has another abrasion. I hate that for him he is in so much pain. Yesterday he had field trip with his friends. He was so happy to go. That night he had bad night, his eyes started to hurt him. I said this cant happen. So i woke him up to get ready he was in pain with his eye. I said do you want to go on your field trip he said yes mommy. So i got him ready, he said can you take the wagon i said yes. So we went on his field trip with his friends, they went to the pumpkin patch. He said mommy i just want to get my pumpkin and go on the hay ride and go home. I said okay we will do that. He was so happy about that. So then we went home.

Evan has told me he hates having all the sores on him. He said i hate when i cant see. He told me he said mommy why do i have to get sores in my eyes. I said baby i don't no. He said i just want to see and play. He just breaks my heart. Its so sad to see him with his eye closed, but he still plays his DS and he still has the TV on. He is strong boy and Evan mommy loves you so much.