weighed 6 pounds 11 1/2 ounces. He had head full of long
red hair. Although I did not know until he was around 3
1/2 months old, Jesse was born with cataracts on both
eyes. When Jesse went to his 3 month check up at the
Health Department, the doctor told me he had something
wrong with his eyes and he wanted me to go see a
specialist. The specialist ended up being Dr. Thadeus
Kelly, the head of the Genetics Department at the
University of Virginia (he is the same doctor who
diagnosed Candice Wall--he had diagnosed her about 6 weeks
earlier). Dr. Kelly asked that we come stay at Kluges in
Charlottesville Virginia. During a week long stay there,
Dr. Kelly arranged for multiple testing to be done.
Dr. Kelly let me know during that week what he thought
Jesse had. So he was officially diagnosed at age 3 months
old, which is so unusual because most of the children tend
to be much older.
While most CS Type 2 children don't
start dropping off the growth charts until about 1 year of
age, Jesse started dropping off around three months of
When Jesse was about 18 months old, he weighed
around 12 pounds and it was taking me a 24 hour period
just to get 12 ounces of formula in him. The doctors,
nutritionist and I started discussing a feeding tube. We
did try a NG tube for about a month before with went with
the G-tube and Nissin wrap. Within a year, Jesse had to be
put on a "diet" because he was too "fat".
learned to crawl, walk or talk but he knew how to make his
needs known. He was an extremely happy baby who enjoyed
being held. During the four years of Jesse's life, he
touched many peoples lives. He taught me so much and no
matter how hard it has been to lose a child, I would never
trade those four wonderful years for nothing.