Evan had his surgery he did good. He got his new Catheter and some iron. His skin is looking really bad. His bottom is really bad. It hasn't looked this bad in long time. His legs are bad and his arms are getting bad. Evan arms always did good until now. so i don't no whats going on. I think it the pain that he is in. He hurts so bad when he has bowl movement and his catheter keeps on getting clogged up. I wish he could pop with out pain. When he has bowl movement it is bad. He will put his head on the floor and say mommy why, mommy why. That just breaks my heart.
Every time i touch him i hurt him now. I cant pick him up if I do he will scream. It's so sad to see you child in so much pain and cant do nothing about it.
He wont eat now. Every time he eats he gets choked. So they told me as long as he is drinking his PediaSure he will be okay.
My girls are in school and Evan is still in bed so i got on the computer to blog and check my emails. Every time i get on my computer Evan tells me to get off and play. LOL.
We are going on vacation for a week in June i cant wait. Its going to be me and my kids and some of my family. I hope Evan will do okay. This is his first vacation. We go to Cincinnati alot but that's no vacation to him. I need to start packing so i don't forget nothing.

I cant wait untill saturday it the Poker Run for Evan. The money is going to Debra for a cure.

Evan is having surgery tomorrow. He is getting his catheter change out, after that he getting iron infusion. Evan is doing okay. He is staying tired alot. His catheter is hurting him really bad. His skin is looking bad. I'm glade its summer but its tearing Evan up. He loves it out side and the heat isn't good for him.

We are haivng a poker run for Evan. The money is going to go to Debra for CURE for EB.

I dont have time to blog right now. Everytime i get on the computer i have to get up and get something for the kids.

I had a good Mother's Day. Me and the kids played and just had fun. I hope all of the other Mommy's out there had a good day.

Evan is doing okay. He has bad sore on his ankle i cant get it to heal. I took him to the doctor and his doctor did a culture on it. so now i have to wait and see what it says. The doctor put him on antibiotics so the infection will go away. I'm still injecting his Gentamicin into his catheter everyday. He still hates it. He is getting some sores on his tongue. He is gaining weight really good. He is up to 30 pounds now. I'm so happy.