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Agenesis of the Corpus Callosum ACCKIDS
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Billy` Story

       Billy Prahst     My Spring Surprise      3/20/95

  We found out I was pregnant not long after we returned from our honeymoon. I can't say that I was excited. I had hoped to be married for a few years before having a baby.
  Billy was due on April 29th. I had some problems during the end of my second trimester. That continued into the third trimester. I had a few episodes of breakthrough bleeding. I had also had a bad headache that lasted for four days. I left work on disability after that. I had three ultrasounds but was assured that everything was fine. Now I know that I should have had a stress test. Billy was too quiet. He was not a very active baby.
  The Thursday before Billy was born I had an OB appointment. I remember telling them that I wasn't feeling well. I don't remember that they did an internal exam. They told me to drink clear fluids. They were treating it as an upset stomach.
  I woke up with a weird sensation on March 20th. The first day of Spring. My water had broken. I spent part of the afternoon on the phone trying to figure out how to get to my Doctor's office. My father-in-law picked me up and took me in. I even went to the store to pick up a gallon of milk for my husband before my F-I-L came!
  My OB sent me across the street to the hospital. I got there around 2pm and Billy was born at 4:58pm. It was a rough labor. I think I felt more than I should have. I don't believe the epidural had time to kick in. They were threatening to do a C-section. I was at a point where I was saying "Go ahead!" But he came on his own. He had a large head and a short umbilical cord. That's what was causing the distress. His apgar scores were pretty good. 7and 8.
  He was taken right to the NICU. I was expecting that since he was early. At 5lbs. 2oz. he was the biggest baby in the NICU. I didn't get to see him until around 11pm. I had a fever and I had to stay in bed until it passed. It's funny, I don't remember much about the first few days. It's like everything started on day three after they told me about the ACC.
  All newborns lose a little weight after they are born. He was losing too much. He was having trouble with a bottle and with breast feeding. An MRI was performed at three days. The ACC was found. We were angry with this hospital because they would do tests like that and not tell us they were going to do them. He spent time under billi lights for jaundice. He had no IV's and did not require oxygen.
  They called me at home and told me that it wasn't an emergency but that I needed to come to the hospital. No one suggested to me that I might want to call my husband and have him leave work. Luckily my best friend was visiting from Ohio. That's when I found out about the ACC. What a way to find out. My husband came to the hospital later and was told by a social worker what was going on. They couldn't give us much of a prognosis. They didn't know what to expect.
  Billy was in the NICU for 25 days. They told us a few times that he would be going home but then they would change their mind. He was being gavage fed and I don't think they were convinced we could handle it. He was miserable in the NICU. It was too noisy and bright. We had to shield his eyes to get him to open them. He would SCREAM when I changed his diaper. He didn't feel like my baby. I felt like he belonged to them. We finally insisted that he be released. He came home the day before Easter.
  And guess what?! He did so much better at home. We found a nipple that worked well for him. We didn't have to gavage feed him very much.
  The first few years were a challenge. He spent most of three years vomiting. We never found an answer to that. He did continue to have weight problems. At nine months old he was overweight at 21 lbs. Then he didn't gain anymore for three years. He has an eye disorder and an innocent heart murmur. He is not toilet trained and he is small for his age. And he is a head banger.
  He is approximately four years delayed. That gap seems to increase as he gets older. The poor guy underwent four hernia surgeries. He was so sesitive to loud noises that he couldn't handle us sneezing in the same room. We found out much later that he has a high narrow palate. That would explain his feeding difficulties.
  Now at 7yrs. old I can vacuum with him in the same room. The boy who never ate meat loves bacon and kind of eats cheeseburgers. He started walking around four years old. He is quite vocal and has a good vocabulary. His favorite words right now are "No-no" and "Oh dear". He is doing well in school. He is my cuddle bug. There are advantages to not having a typical 7yr old. He still wants to be held.
  I can't imagine my life without Billy in it. He means the world to me.

                                                                       Julie Prahst