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.

Evan had to get blood transfusion done on Thursday. They checked it on Monday. His HGB was was 6.9. His iron level was 24. I new it was low he didn't have no energy and he was really pale. I wish we could get it to stay up. He did good with it. It took 4 hours he watch TV and we played trucks. He is such a good boy.

Evan at school wear his green on St. Patrick day.

The weather has been so nice. We have been play outside everyday, we have been going to the park. He loves it. I have him out now because when summer gets hear he wont be going out. Evan is doing good. My girls are doing good to.


Evan goes Monday and he has to get new Catheter. He tells me that he don't wont his catheter no more. He said his tube hurts him so bad, he said tell the doctors that it hurts him and he don't wont it back in. I wish he didn't have the catheter. He just break my heart.





We got a present the other day. I don't no who got it for us, but me and Evan love it. Tri county came knocking on my door and they had rocking chair. I said that's not for us, he said yes it is. I said no i didn't get no chair. He said there a note hear for you. And i read the note and it said hear is a rocking chair to rock your baby. It didn't have no name. So who ever you are i want to say THANK YOU SO MUCH. We love it.