Tuesday, November 30, 2010

We are having okay week so far. Yesterday me and Evan went to my moms and helped her put up her lights outside. Evan had so much fun. He said i help mommy i help granny i help paw paw. He was so fun and he had so much fun. Then i came home and we did mine. Evan and the girls decorate the tree, it looks so good. Evan loves the tree and the train under it. He lays there and he will watch the train.
Evan is still having a hard time pee. I called the doctor yesterday he said he will talk to some other doctor and call me back. They think he has blockage some where up in there. So why aren't they doing anything is my answer. So I'm going to call them back today hear in a few. My son can keep on like this. So the peeing think is driving me crazy, because i have to watch my son in pain and i hate it.

Friday, November 26, 2010

I hope everyone had a good Thanksgiving. We had a busy day. We went to my family's an had a good time. Evan was in good mood. I'm so thank full for my kids and family.

Evan is doing okay. He is having hard time peeing still. I have call and talked to Cincinnati they think it still burning him when he pees. He is holding his pee and that's no good. So when Monday morning comes around I'm going to call them again and tell them, he is still hurting to pee. I fell so bad for him, just watch him to pee it so sad. He just screams. Everything else is doing good. His breathing is the same, he still breaths hard when he plays. He cant get over heated or he just has a time. He will get choked up.

Sunday I'm going to take my kids to the mall and spend some time with them. They have a small train at the mall I'm going to let them ride. I hope we all feel okay by then. I have a bad cold and so does Hannah.

Friday, November 19, 2010

Wednesday morning came i got Evan up and ready to go to the hospital he new there was something going on. So we got to the hospital he was fine at first then he new where he was. Evan was cry and he started shaking. I felt so bad for him. There was nothing i could do he was crying,kicking, hitting me and everything else. So finally we got him some bubbles and some trucks that worked for awhile, then no more. He said mommy go mommy go. He was ready to get out of there. So it was time to go to the OR, I had to hold him down with his blankets around him and they gave him his gas to go to sleep. It was so sad. I gave him a kiss and told him i loved him see him in bit. He was back there for 2hours. Then i got to talk to all the doctors, the ENT doctor said his airway isn't getting no better his vocal cords are swollen he has a lot of blister in there. He is really worried abut him. So we go back January to check his airway, if his breathing gets worse before then we go back up there then. I don't wont to trach Evan until we have to. The urology told me that his penis looks okay they took the stint out. So we are hopping this will keep it open if not, he said there is some other stuff they can try. Then his dental work they took 4 teeth out and cap 4 of his back teeth. They cap them so he will have them to eat with. He got a couple of blister in his month put they took care of them while he was a sleep.
So i got to go see him in the recovery room he was sleep so good. I was check to him to make sure he didn't get no new blister and he did a big one on his arms. So i got my stuff and fixed it while he was still a sleep. So then they took him to his room to get ready for his iron infusion. But the doctor came in and said we have to wait to do his iron infusion, his blood work came back that his HMG was low so we had to see which one they was going to give him. So he got a blood transfusion done. He did really good with it. We stayed at the hospital over night so they could watch him to make sure he was doing okay. Evan did good.

Monday, November 15, 2010

We are leaving tomorrow to go back to Cincinnati. Evan is having surgery Wed. He is getting the stint taking out of his penis, getting his airway check and dental work done. After surgery he is getting a iron infusion done. So Wed. is going to be a long day. His iron is low again, i guess it will stay like that until he will take his iron medicine. He don't like it and i cant say i don't blame him.
Evan is doing good, he still not eating. So i hope when he gets his teeth fix he might eat.
He is really talking now. I love it. He tells me that he loves me all the time. That keeps a smile on my face all day long.
Evan mommy loves you so much.

Saturday, November 6, 2010

Big sister giving Evan his breathing treatment.

Monday, November 1, 2010

I hope everyone had a good Halloween. We did. Evan wouldn't wear his costume but that's okay. I took him out for a little bit he didn't have fun, so we went back to his Granny's and he gave out candy. I didn't get many pictures of him or my girls this year.

Evan is doing better, the peeing thing is alot better. He is having bladder spasms so he is on medication for that. And its working. So we go back to Cincinnati Dec.1 to take the stint out and i hope this will keep his hole open.
He still not eating like he should, but his weight is still good. So that all that matters. He is on the Beneprotein so he is getting his protein.
He is really talking now, he can saw just about anything now. I just love it. He tells me now that its cold outside.
He gets a teacher that comes once a week and he does so good with her. She works with him on his numbers, colors, shapes. I'm so proud of my son. He does so much for all the pain that he is in. I love you so much EVAN.