https://www.facebook.com/groups/191661084289854/


Hear is Evan's facebook page also.

I had to take Evan to the doctor today. He was up last night with really bad cough, and fever. He has sinus infection or upper respiratory infection. He can never get break.

We will be going back to Cincinnati soon for skin grafts and scoop of his penis. We are hopping to take His SP Catheter out. Evan wants his catheter out so bad. So i pray that he can pee out of his penis.

Evan is doing okay with his trach. He still don't like it. His neck is doing little better. Evan is breathing so much better, he can play and not get out of breath.

I want to say thanks to everyone for the gifts and card Evan has gotten. He has loved everything. We have got stuff from so many people and in people that don no us from different states. Its so nice to see that there is so many nice people out there.

We had to go back to Cincinnati for EB Clinic. Evan had to have ultrasound on his bladder and kidneys. We finally got some good news. They said Evan was doing great. They might take his Catheter out when he has skin grafts. Me and Evan was so happy to hear that.

We will go back in couple months so Evan can get his skin grafts, and then they will look in his penis and might take the catheter out. I hope and pray that it works.The ENT doctor will also look in Evans airway to check out things.

While we was in Cincinnati this time i told Evan we would have some fun. So we went to the Aquarium. He loved it he had the best time. When we walked in there he said what about my trach, i said its fine. He said will the fish and the sharks like it. I said yes they will love it. Poor thing worries so much about his trach.

 Evan at the pool.

 



 Evan and Daisy eating pizza.

 

 When we got home they had the monster Truck Show.

 

Evans favorite truck.

We have had a lot going on. I had to take Evan to Cincinnati three weeks ago, because he was having hard time breathing. The ENT doctor said he had to scoop him to see whats going on. He said i think its time for a Trach i said no. So the day came i took him back to the OR, i felt bad i just new something was going to happen. I was sick to my stomach and i got upset. I never get upset. So i went to the waiting area, and it wast 5 minutes. i said OMG what happen. The doctor and nurse was there i new something happen. He said Evans airway closed up and he stopped breathing on the table his oxygen level went to 30. And he had to put a breathing tube in his airway to keep him hear. He said his heart didn't stop, but he did stop breathing. I said OMG. he said Evan needs a trach and i lost it. I didn't want a trach. So i said please do it. I don't want to lose my baby boy. So Evan was back in the OR for a long time. Then they put him ICU. I finally got to see him and he looked so bad. I said mommy is hear, and he pick his hand up so i could hold it. I got his hand and i said im not going no where. I told him that i loved him. It was so hard to see him in so much pain and he was trying to talk to me and he couldn't. I said its okay mommy is hear go back to sleep.  

We was in Cincinnati for two weeks. Evan has done good with the trach. He is talking and eating good. His neck and his face has a lot of sores on it. So I'm trying to get it to heal. We go back to Cincinnati in couple more weeks.

 The day Evan got his trach.

 

 Couple days later.

 

 

 Evan was up and out of bed.

 His Balloon I got for him.

 

He finally was able to get out of his room and go for a walk.