Sunday we got 9inch of snow and the kids had so much. Evan loved it, this was his first time playing in the snow and he did everything his sisters did. It was about 6:00 and they was wanting to go back out. I said just for few minutes because it will be dark. So they had so much fun they didn't wont to come in. That night i new Evan would sleep good. Evan feel asleep on the couch around 8:00 so i put him to bed and then i stayed up until 12:00. So i went to bed and just fell asleep Evan woke me up vomiting. I said oh no. So i got the bed clean up and got him back to sleep and he did it again. So finally around 3:00 we got to sleep. When he got up he was fine. He was wanting to go back outside and play in the snow. So i told him no maybe later. So around 1:00 we went back out, he played for little bit, but you could tell he wasn't up to it. He said mommy i wont to go in. We went in he got his cup and went to sleep and sleep for 3 hours. He still wasn't feeling that good.

We didn't make to his appointment either because of the weather and he was sick. We go back to get his catheter changed out on Monday. He catheter is really hurting him now.

I took the kids to the trains station. Evan loves going there. The weather was so nice. We seen so many trains. The kids rode the train couple of times.

Evan has been doing good. We go back to UVA tomorrow, if we don't get all of this snow we are suppose to get. Evan will get his new catheter and his blood check again. His HMG is getting low so he might need blood transfusion.

Evan is using the potty now. So no more diapers for him. He is doing a good job using the potty. His diaper area is looking some what better.

Happy Valentine's day.

Evan had a Valentine's times party at school today. I was so glade i got to go and see all the other kids. Evan was so happy that his mommy was at school with him today.

This is what Evan plays with everyday. He loves his monster trucks.

Evan getting ready to go into the OR.

Evan did good today. He did get his new catheter. They call me to come and see him in the recovery room, so i got up there and he was sleeping. So i got his clothes so i could put it on him while he was a sleep, like i always do. When i was doing it he woke up and he wasn't right. So i just picked him up to hold him, and i told the nurse i said something is wrong. So we waited for a few and then she said I'm calling the doctors. Evan couldn't pee, i was scared. So finally the doctors came in, and they had to pull his catheter out some. OMG that hurt Evan so bad. His catheter was in to far and he couldn't pee. Then he was filling better i was so glade.

Evans blood is still low. They didn't give him no blood they are going to do it when we go back up there on the 20. I wish we could get his blood back up i think he would feel so much better.

I just wont to think everyone for there prayers and keep them coming. We need a cure for EB.

This is Evan's favorite truck

Evan got to go to the monster trucks. He was so happy, and we had so much fun. His eye was doing better so we went. All i can say is god is great, i prayed and prayed for his eye to heal by Saturday and it did.

My 3 babys.

Evan goes Friday and he has to get new Catheter and get iron infusion done. It is time for new tube he is hurting with this one. He does good the first two weeks then after that he is hurting. I wish he didn't have the catheter.

The last couple of weeks now he has been choking alot. I don't no what that is all about. I no he scares me when he does it. I took him to the doctor they said it was acid reflux. He is on medicine for that. So i called Cincinnati and they wont to check his airway in March, They think it might be his airway. I hope not. Evan cant play hard no more because he has hard time breathing, His breathing gets really hard. I just hope his airway is going to be okay, i don't wont no trach.