Dear Dr. Chait:

     I am sorry that I did not keep a daily journal for you but I was very busy with Christmas and my birthday. I was in a play where I was a lamb and I had to practice my parts. I was also in a Christmas Cantata where I played Jesus as a toddler.

     I was glad to be home from the hospital but my side hurt for a few days. At home, I tried walking around for a couple of days but I didn’t walk very far because my side hurt. I also have a little bit of pain when we do the irrigations. But I find the busier I am and the less tired I am, it hurts less. And also, if we don’t put the stuff in too fast. My mom bought me a TV for in the bathroom and I find that sometimes I just feel like watching a movie while we are doing the irrigations. This helps with the pain.

     When we had to change the dressings it hurt. It didn’t hurt as much when we used remove. I think my dad changes the dressings the best.

     The first time we did the irrigations, we had a nurse come in to do it. But I think it hurt more than the first time my parents did it. The nurse wouldn’t look at the papers my dad showed her from the hospital and used too much enema solution. My dad phone down to Toronto to double check the amounts. This worried me and really upset my dad. He phoned my mom at work to tell her what had happened but was so upset that he couldn’t talk to her but finally he did. This whole irrigation was a bad part for me.

     After a couple of weeks we noticed some granulation. He phoned Toronto again and asked what to do and if this usually happens. They told him that the discharge could happen for quite a while but to leave the bandage off if possible. They also said to bath in salt water or swim in a pool. When we did this it disappeared and we were very happy. It came back again and I have been having lots of baths. Sometimes my mom has to bleach the water to make it like a swimming pool and sometimes salt but the granulation is still there. I worry that it won’t go away and I am scared when I take my bath that the tape holding my tube to my stomach will come off and the tube will come out. My mom says it is OK in the bath.

     I don’t like the discharge. It gets all over my clothes and I am afraid that people will see the mess at school. My mom says only my EA, Miss Leigh will know because I wear a good shirt over my undershirt. It makes my clothes very dirty and it doesn’t come out in the wash even when my mom bleaches them.

     The best part of the C-tube is that I don’t have any accidents in my pants like I used to. This makes me feel pretty good.

     I have a question to ask you. Is there any way on a scale of one to ten, that the pain with the irrigations can be a one? Sometimes it gets over the scale. We are working really hard at keeping my stool soft. Another good this is that I am eating a lot better. My mom keeps saying that maybe I will grow. At the hospital one day, me and my dad went to the playroom. Then one of my friends came to visit me. His name was Harry. I found that the surgery room was not as scary as I thought. I liked it that my mom and my bear could come with me. I also knew that God was with me.

     At home, a friend named Al came to my house to visit me. He brought me a balloon and a teddy bear. I think the patients might go with the doctors a lot better if they had a stuffed toy.