Sunday, July 31, 2011

Evan waiting for the monster trucks.

My 2 girls.

Hannah and Evan

Chy and Evan

Me and my kids.

Evan, Chy, Hannah at the monster trucks.

Evan has been doing good. I took him and my girls to the Monster Truck this weekend. He loved it. He loves the monster trucks, he has almost all of them.

He is getting lot of blister on him. His arms are looking so much better now. His diaper area is getting better to. His eyes are still hurting him lot. The new medicine isn't helping his eyes. I was hoping his eyes would heal up. He tells me now that his feet hurts. I don't no why his feet are hurting, they look fine.

Saturday, July 23, 2011

We was in Cinicnnati.

Evan got a new train. He loves train.

He was playing in the water.

Friday, July 22, 2011

We need to pray for Tripp. He has Junctional EB just like Evan. Tripp is in alot of pain and he if fighting a infection. He needs our prayers. His is strong little boy, his mother is strong to.

Thursday, July 21, 2011

We home from Cincinnati. The eye doctor took some pictures of Evans eyes, to send to another doctor. She told me to use the ointment 4 times a day on his eyes, and use the other ointment at night. So he has to different ointments for his eyes. I hope it helps. We go back in September to see if his eye are any better.

Evan had ultrasound done on his kidneys and his bladder. After the doctors read it, we had to talk to the doctor.
Evans kidneys are good. So that was good news. His bladder had some bacteria in it. So that's no good. But the doctors told me as long as he don't get a high fever or get really sick he will be okay. I asked them what else can we do. He still hurts to pee, his bladder it tearing and getting clogged up in his catheter. He said nothing else he can do. He said if it was he would do it. He said we need a cure for EB. EB is doing it to him. His bladder is just like his skin it tears and then it heals. He said he can't get bigger tube because it will hurt him more. He has 16inch catheter in now and he said that is big for him. I asked him, what is going to happen if he leaves this catheter in for a long time. The doctor hear at home said its not good to have Supapubic Catheter in for a long time. The doctor told me he will be okay for now. But the risk is that he can get cancer in his bladder. You no me i didn't like to hear that. But this is the only thing we can do, he has to pee. Evan has to get a ultrasound done every 3 months to check his bladder and his kidneys. We will be going back in September to see the Urology and get another ultrasound done.

Friday, July 15, 2011

July 11 Evan had to get another catheter put in. He is having hard time with the catheter. It is getting clogged up all the time now or he is keeping UTI. His eyes have been bad to. He hasn't been able to open them all week.

Next week are going to Cincinnati to see and eye doctor. Evan has to have some test done to. We have a meeting with the urology to, talk about what the next step is going to be.

Evan is so sore if you touch him he hurts. He is getting all kinds of new blisters. His arms still blistering up. If i wrap them they get more blister so i don't wrap his arms. His feet hurt to he don't wont to wear shoes no more.

He has been laying around alot. He does get up and play with his sister for awhile then he will lay back down. Its so hard on him he wont's to do what his sisters do.

I love summer but I'm ready for fall. Evan wont's to go outside, but it has been to HOT. So we have been staying in alot.

Monday, July 4, 2011


Today is Chyanne birthday she is 10. I just don't no where the time goes.

Evan is still having hard time with his catheter. We go back to Cincinnati in couple weeks, to talk with the doctor to see what the next step will be. I don't no what they can do, but i hope they can do something so he can pee with out pain. I hate to see him in pain and he cant pee. Evan arms are looking bad. He has never had problems with his arms until now. His eyes are still hurting him to.

The heat is bad i wish it would cool down some. He wont's to go outside so bad and it's just to hot. I hate to tell him no. So he stands out the window and watches his sister out there playing. That just breaks my heart.