Evan has been doing better. We have put our stuff up for Christmas and he loves it. He says when Santa coming.
Tomorrow I have to take Evan to UVA to get his new catheter and talk to the doctor about trying something else because his catheter hurts him so bad. He also has to get his blood checked. We haven't had it check in two months so we will see if he needs iron infusion. I hope he wont have to.
We are still waiting to get his grafts done, the insurance is denying it. We are staying on them. If they don't pay for it, I'm going to pay for the rest of his eye to be done. He needs it done and i think it will help him feel better about his self. The graft on his eye lid took and its doing great.
Evan has been sick. He had the stomach bug. It was bad. He is feeling so much better.
We went to the mall today to get out of the house. Because i was going crazy for being in the house all week. They had the train there. Evan loves trains. So him and his sisters rode the train couple times. Santa was there but they wouldn't go and set on his lap. Maybe next time.
When we go out everyone looks at Evan and say some stuff. I try to be nice and go on. Well today i didn't. I had my cards with me and gave them to people that looked. I had two men come up to me and say whats wrong with your son, and i told them. He said can we pray for him i said yes you can. There is nice people out there.
We are still waiting for the doctor to call about his skin grafts. We are waiting for Evan insurance to approve it. We are having hard time. You no that makes me so mad. If this will help him he needs it. But I'm going to keep on fight to. His graft on his eye work so why cant we get the rest of it done. He deserves it. All i do is pray that the insurance will approve it.
I hope everyone had good Halloween. My day started i had to take Evan to UVA to get his catheter change out. Then after he woke up from the his surgery he couldn't pee again. So we had to stay there for long time. We didn't get home until 7:00. I was so mad. Because i wasn't home with my kids to get them ready for trick or treat. Chy went with on of her friends and Hannah went with Becky and Lucas. So when we got home i got Evan ready and we went to Tracy moms house. We only went to couple house because Evan wasn't feeling good at all. They made us dinner and we went home to eat. The girls finally came home and they told me all the fun they had. Man i wish i was with them.
I got on Facebook that night and everyone had pictures of there family have so much fun trick or treat. I wish i could have post picture of my kids. But i couldn't Evan wasn't feeling good so i didn't get no picture of him. I just wish his EB would let him have fun one time.
Last year we wasn't home for Easter because he was sick, he didn't get to go on his field trip to the pumpkin patch because he had abrasion in his eye. then he couldn't have fun on trick or treat. EB is so horrible i hate it.
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.
Evan had to go back to Cincinnati for check-up on his eye. She said the graft took. So we are so happy.
We also had to see the ENT doctor because of his breathing. He thinks alot of his breathing problems is coming from his noise. Evans noise is so crusty and he cant breath out of it. SO he is putting him on some nose spray and hope it helps. If he keeps on having problems he will check his airway. We don't want to check his air unless he has to.
While we was at Cincinnati this time and the weather was so nice we went to the zoo. We had so much fun at the zoo.
Evan had good birthday. We had his party at the train station. The weather was nice it wasn't hot. There was storm on the way. So we tired to get everything done before the storm came. So we was getting ready to eat the cake and the storm came. The wind picked up and it rain so hard. So all the kids went inside the building, and we clean up everything and put the stuff in the car. Evan had lot of people there and he got alot of nice stuff. I want to say thanks for everyone that came.
Evan has to go to UVA tomorrow to get his new catheter. He has been doing okay. I had to take him to the doctor on Friday he had sore that didn't look good. So Dr. B. did a culture on it. We should get the result tomorrow. I hope its nothing. He had a fever over the weekend. Today he seem okay no fever. He is breathing little hard. I been giving him breathing treatments. I hate when he breaths like this. If it keeps it up i will be taking him to Cincinnati to see the ENT doctor. His airway is already small don't want it to close up.
Evan starts school tomorrow he will miss his first day. But on Wednesday he will be there. I cant believe its time for school already. He will go 5 days week for 3 hours day. I hope he will like it. It will be good for him to being around kids his age.
I just want everyone to please pray that his graft will work on his eye. We go back in couple more weeks to see the eye doctor.
Evan is doing good. He has his left eye open now. The eye with the graft still swollen. But he is so glade to be home. Yesterday he played in his room all day. He told me that he was so glade to be home.
Now we are just watching his eye and see if the graft will work.