We went to Cincinnati to see the eye doctor. They said that they are going to try the skin grafts on his eye lids. They said it may not work. But we are going to pray that it works. Evan has lost most of his eye lids they said that we have to try this. We are going back in June for the surgery on his eye lids. We will also see the ENT and the Urology to.

Evan has had lot of problems going on now. But i no he is fighter and he is going to fight this. I just no i hate this illness. The illness is getting to my little man. His eyes, his airway and the urology problem. His skin looks good but he has a lot of other problems. So keep Evan in our prayers.

 Evan at Humpback looking at the water. He loves throwing rock in the water.

 Evan and Chy at the zoo in Cincinnati.

 Looking at the animals

 Evan's favorite animal. 

 Evan getting ready for surgery he wasn't happy at all.

 Evan after surgery. When he got out of ICU.

Evan feel and gashed his head open, on our way home.

He loves to play in the dirt with his monster trucks.

Evan feel hit his head on the step. He gashed it open. Took him to the ER he needed stitches but we didn't put them in. The doctor was afraid it would tear his skin and so was i. I didn't no how we was going to hold him down if they stitched his head. So we decided to wrap it up and i will just keep it cleaned and keep it wrapped up. Evan has had it bad the last few weeks. I hope it gets better for him.

We are leaving tomorrow to go back to Cinicnnati. He has to see another eye doctor. They are worried about his eyes he has lost a lot of skin on his eye lids. They said if the eye lids dont heal he will lose the rest of his eye lid. If that happens he will go blind. I dont want that.

Evan had surgery Wednesday. It didn't go as good as i was wanting it. Evan's airway is really small he has lot of scar tissue and it is swallow. The dilation went good. The ENT came and talk to me about his airway he said we are going to have to do something. He said that he could cute all of the scar tissue out and open his airway up. So he is going to talk to other doctors and let me no what they are going to do. Then the urology came in and said he change out his catheter. He said the lining of his bladder is gone. The EB is in his bladder, they said there is nothing else they could do. This is the safe and the only thing they can do because the other things they could do would tear up his skin. So Evan has to keep his SP catheter. Evan had bad UTI Saturday so he is still antibiotics. 
After surgery they took his tube out of his throat and he could breath, so they had to put it back in. When he got to ICU Evan was so up set he pulled his tube out his self. So they had to keep oxygen on him, sucking the mucus out they was giving him breathing treatments. Then they gave steroids, finally his breathing got little better. The next day he was going little better. Thursday we got to get out of ICU and go to another room.
Today he had the video swallow test done. It turn out good. He just has to drink really slow and not fast.
Today we get to go home. Evan is so happy and so am i. we just have to watch him close with his breathing.

                          THANKS FOR ALL THE PRAYERS.

I hope everyone had good Easter. I no we didn't Evan was sick on Saturday running a fever. So i had to take him to the ER. his fever was up to 103. So the doctor told us we need to go to Cincinnati, so Sunday morning we got up and the kids got there Easter baskets. Then we head to Cincinnati.  When we got up to Cincinnati they gave me some antibiotics to help his infection, he has bad UTI. I wasn't wanting to come up hear on Sunday i was hopping to be home with my kids on Easter, but he need to see the doctors.
We was leaving on Monday to com up to Cincinnati see an Eye doctor and he is having surgery on Wednesday.
My kids loved what they got for Easter. Evan wants to go home and play with his stuff that the Easter Bunny brought him. So I'm hoping we will be home on Thursday. 
Evan is feeling little better now just waiting for Wednesday so he can get new Catheter, he is having blood work done,  the ENT doctor is check his airway and looking at his tongue, and he is getting his throat dilated. Then after that he is getting iron infusion done. After all of that he will be so ready to come home. I feel so bad for him, he is wanting to go home so bad. I want to thank everyone for all of the prayers.

Happy Easter

Evan riding his sister 4wheeler. I cant believe he is driving it.