We had a party for Chyanne today. Her birthday is July 4. She will be 9 years old my a baby girl is getting so big so fast. where did the time go.
I wouldn't to have it today because we are going back to Cincinnati Tuesday. We don't no when we will be back home.
Evan is going to be put to sleep and get scooped to see what's going on in his airway. I know everything will be okay. They said if he gets trach will be there for awhile so i can learn how to take care of. I don't no if i wont him to have a trach, but if it's going to help him breath i guess i will. He is also going to get his little boy parts looked at. He is still having a hard time peeing, his hole keeps on closing. So they are going to see what they can do. HE is also going to get his blood check to makes sure his iron is okay. So we are going to have busy week and Evan isn't going to be happy at all.

We had a good trip. We meet some awesome people. It was so good to talk to people there that know what you feel.

We took Evan to the dentist there and they didn't do nothing to his teeth we go back in 3 months and then they will cap them. I wish they would have done it now. They said that his teeth need to come in some more. What do i know. I think they should have caped them.

We went and saw the ENT doctor. He scooped Evan and his vocal cords are even thicker and swelling. and he had a blister in there. We go back to Cincinnati July 1. and they are going to put Evan to sleep and look in his airway. If he thinks Evan needs a trach he will put one in then.
Evan cant go outside and play now. The doctor said the heat is making his breathing worse. SO now we have to keep him inside that is going to be the hard thing to do. It's so sad he looks outside and he just cry to go out. What do you do.

Evan is still having a hard time peeing. I had to take him back to Dr. this morning so they could open him up. He still cant pee. This is two nights now that he has been up because he cant pee. Mommy is getting really tired. But i will be okay.

He still not eating. He might eat one little meal a day if that. I'm so worried because he isn't eating. The doctors said that he will be okay. I don't wont him to lose no weight.

I'm going to try to lay down. I'm so tired

This has been crazy week. I'm trying to get stuff packed for Cincinnati.

Evan is doing better then what he was doing. I had to take him to the ER Friday night he was having hard time with his breathing. They didn't do nothing. His oxygen level was good so we was happy with that. When we go to Cincinnati i hope the doctors can help us with his breathing. When you see your child having a hard time breathing it scary.
Evan face is clearing up to. I'm so happy.
Now his diaper area is bad. He has yest so bad. And it wont go away. He has had it for 4 day.
He hasn't been eating either again. His mouth is so red so i guess that's why he isn't eating.

We will be going to Cincinnati for the conference i cant wait to meet other family's. And be able to talk to other parent that no what we are dealing with.

Evan just talking i wish i new what he was saying.

Evan had to go and see the ENT doctor today. His breathing still hasn't been good. So the ENT doctor is going to check his airway to see if he can see anything. We are worried about his noise to, because his noise bleeds now all the time. Evan cant lose no more blood he is already anemic. So they are going to put him to sleep and put the Silver nitrate on his noise. I don't no when the surgery will be done. They are going to try to do it soon. So i hope I'm worried about his breathing. He can't do nothing and his breathing gets so bad that he has to sit down.
He still not eating like he should. His little boy parts is still hurting him. But he is peeing.
I got the pool at this week and I put it up, I put Evan in it and he loved it.
It has been to hot to play outside, so we have been stay inside. It is making me go crazy. But i guess i will be okay. I feel so bad for him because he cry to go outside with his sister. Its so sad. I hate EB.