Evan had a bad night last night he was up almost all night, he had a fever101.5, and he still has his diarrhea. So I'm going to take him back to the doctor Monday. He seems to be okay for awhile then he just starts to cry, like something is hurting him. He don't wont to drink his milk. He is having a lot of gas to. His skin was looking so good now he is getting new blister every where. The top of his head has some blisters, his buttock is very bad.
Evan PT came over Friday to check him out and see what all new things he was doing. She couldn't believe everything he has been doing. We never thought he would be doing what he is doing now. I'm so glad. I told her the next time she came out he will be walking she said probably, I hope. I can't wait to see him walk. When Evan was 7 months old all he was doing was trying to set up but he had a hard time. Now he is 11months he is doing everything he wont's to walk but he has a hard time. His right leg is still weak, but he will get it.
So lets pray that he will sleep to night and that he will feel better.

I got my computer fix.

Evan is doing okay he is going to the bathroom okay. I hope the cream keeps his penis open. Now he has diarrhea bad so now we are going to do a culture and see whats going on. He don't have fever he seems to be okay just has diarrhea bad. I hope is nothing. He isn't eating good this weeks he don't wont his bottle. He is eating some food, so that's good. He is pulling his self up he wont's to walk so bad.

My computer is still down, I'm at a friends house on there computer. We did not do the procedure on Evan i talk to the doctor's in Cincinnati they said for me not to do it. So we aren't doing it right now. They gave us some cream to put on his penis, so I hope this works. Evan is doing okay now so lets pray that he will be okay.

Extra Prayers

Hey everybody, this is Mandy, Christina's friend, posting for her because her computer is down. Evan had to be sent to Dr. Moshy, the urologist today because the skin keeps growing over the end of his penis and making it hard for him to use the bathroom, and can lead to a UTI which Evan definately doesn't need to deal with on top of everything else! Dr. Moshy has trimmed the skin back before, but he said that its just not something he wants to do every week for him. There is a surgical procedure that Dr Moshy wants to do where he trims the skin around the opening so it won't keep growing over. Christina has to make the decision on whether or not to put him to sleep and have it done, or have him awake, but held down, while he numbs the penis and does the procedure. Both options have many risks with a child like Evan, since he has respiratory issues and its hard for him to breathe, so putting him to sleep is a scary thought. The holding him down part is scary because any kind of friction on his skin can cause blisters, and it would be traumatic for him. Please pray for Christina as well as Evan as she makes this decision for him and that Dr. Moshy is able to do the procedure with the least hurt to Evan.

Mommy i'm standing up now.

I'm going to walk soon

Evan is doing so good this week, I'm so happy. He still not eating that good. He is pulling him self up on the couch now. I'm so happy, he will be walking soon. I hope when he walks it wont hurt his feet. His hands are still bad, he wont keep them wrapped at all.

When his PT comes back she is going to be so happy with him he is doing so much now. He is says some new words now.

He is my life is so amazing. I love my girls to.

Today Evan is 11 months old I can't believe it. Where did this year go. He is doing so much I didn't think he would crawl or anything, and now he is crawling he is trying to talk I'm so happy for him. He make me so happy he is in so much pain some days but he just goes and does what he wont's. I just hope one day soon they will have a cure for this illness.
I'm going to have a big birthday party for him so i have been try to fine a place to have it at, an fine stuff for him.
He is doing so much better this week I'm so glad. He still not eating so i don't no what I'm going to do with him. I hope he will start eating soon. His toes now are getting bad so i hope they will heal up soon, but i no they aren't because he crawling. I keep them cover but they are still looking bad.

Evan is feeling so much better. I'm so glade. The only thing is when he was sick he got spoiled more. Now he wont's to sleep in Mommy's bed, when he was sick all i could do was hold him. So now he wont's mommy to hold him in my bed. I don't like him sleeping with me, but if that makes him happy, then I'm happy. He still not eating like he should but he is eating so that's good. Now if I can get his noise looking a little better we will be okay, but his noise just wont heal.

We need everyone to pray for Evan. He has a had fever now for two days. I'm not sure what's going on with him. All he has done is cry, so all i do is hold him. To make him happy.