Our journey with Jess began in October, 1993. The delivering doctor didn't notice anything wrong with Jess. However, about an hour later  our pediatrician visited us (while still in the delivery room) to review our baby's health just as he had with our previous two children. As he reviewed all the things that were right with Jess, we knew that there was something yet to be said. Finally, the doctor said that he was concerned about the possibilities of a mongolism. The feelings at that moment can barely be described. They came from an immediate realization that there is no fixing this with  medicine, or surgery, or anything.

Anyway, the doctor said that there was just a chance, but that he wanted to have a test run just to be sure. He said that he would have results in about 3 days, as he didn't want us to worry. So we worried. I thought immediately about reasons to be thankful that it wasn't worse. But in the end, I lost 10 pounds in that first week. I remember hearing a nurse around the corner in the nursery say in a sweet tone, "What a funny looking baby.", and a second nurse who knew I was there, say "Shh!". We told our parents. Reactions were varied. As the days went by, nurses and others all were certain that there was nothing wrong with the baby; he looked too normal. We tried to hang on to that, but then there was that doctor having those tests run.

After two long weeks the tests came back stating that Jess was not classic Trisomy Downs, but that he did indeed have extra chromosomal material attached to chromosome 4. It still could be Downs. The news was devastating. It was the bottom. We began to start telling friends. The words would barely come out.

At about two months the report was that he did not have Downs (Trisomy 21), but that the material was of an unknown origin. The medical science center said that they really couldn't determine the chromosome number with their current tests (in 1993). For me, this turned out to be a major blessing. In fact, I was very happy not to know. This left open a whole range of outcomes to be hoped for.

Time went on. A lot of time. When Jess turned 4, in 1997, we learned that they could now isolate all chromosomes. So we decided to have his genetics tested again with the new techniques. This time the answer came back Distal Trisomy 10q 25.3-qter. For me, this was a none event. It didn't mean anything. It didn't change anything. Jess was Jess. A child with special needs and not a funny sounding syndrome. Leslie hoped to be able to find information that would help in his education through corresponding with others. And we checked the web. As most of you know, there is almost nothing out there on 10q.

Jess is generally healthy and doing quite well, but on the other hand has many abnormalities. The most impacting of which is significantly delayed speech. He is just now able to communicate fairly well with us, but has many missing sounds which makes it very difficult for many people to understand him.

He is just 30 lbs, and has gained no weight in a year. He is quite short at 38 inches. He has small ears and ear canals which made hearing difficult until recently, especially when he had colds. He has some allergies (rash). Cow's milk seems to be a problem, so he drinks goat's milk. He has been very susceptible to croup. He also has asthma and so we have a nebulizer. Jess is potty trained as far as pee-ing goes. However, he rarely poops on the pot, and saves it for his diaper which he wears at night. Occasionally, he has a day time accident. He is very strong. Almost from birth he was nothing but bone and muscle. He could hang by hands from a clothes line at 6 months for quite a few seconds. At about 24 months (I think), we noticed that one, or the other, eye would wander when he was tired. So, at about 3 yrs, he was diagnosed with Asymmetric Strabismus (sp?), and was operated on. This fixed the problem. At the same time, tubes were put in his ears, which lasted about 6 months before they fell out.

Jess is a bit delayed with his fine motor, but gross motor is about right. Cognitively, Jess is somewhat slow, but very well socialized. He can stand his ground with his 7 yr old brother if need be. He is very active, likable, empathetic, happy, and fun. Everyone who meets Jess seems charmed by him.

Jess has an older brother, Eric, who is 7, and a sister, Jenny, who is 10 (as of Sept 98). Neither have 10q.

A quick update. Jess continues to do fine. He was out of glasses for a while, but has them again. He manages them completely on his own, as if he is proud of them, or knows he needs them. Probably both. He always knows where he put them. He is getting a palette spreader in his mouth which will correct a cross bite (typical kid thing) and help him get his tongue up to the roof of his mouth. This should help his speech. His speech is still difficult. Most people that know him can understand him, but not always. Otherwise, he has been quite healthy. Hears well. No croup this year, for a nice change. He is in 1/2 day kindergarten and doing well. He is certainly behind the other kids, but his is learning letters, numbers, patterns and the like. He can sing his ABC's, with a few helps.

Jess played soccer this fall. He didn't get into it much. Mostly stood around. But he did kick the ball a few times when the action got too close. He is still a real charmer, but can be a bit stubborn when he wants too. We don't know yet if we well have him repeat kindergarten, or not.

Well it's been a while, but Jess is 16 years old now. He is a freshman at Corvallis High School and is in both the lifeskills room and some regular classes. He still loves cars and is taking Metal Shop so that he can take Auto Shop next year. He is still very social and has many friends in and out of the lifeskills class. He loves watching NASCAR and is a big Jimmie Johnson fan and likes playing NASCAR on the XBOX. Jess has 4 cats and is very good at taking care of them. He often displays teenage attitudes (ha, ha), which is a mixed blessing. He has borderline OCD behaviors and likes to have everything put in its place. We work on this to make sure it doesn't get out of control. He loves helping out a church. He stands along side and ushers with his grandfather, and also is a helper in the children's program.

Jess loves riding his bike. He rides it out every day to get the paper and mail. He also likes playing and watching basketball. He played basketball in Special Olympics this year.

Jess is still wearing a back brace, but that will be coming off in the fall as he has supposedly stopped growing. He is about 5 foot 4 inches and about 95 lbs. He developed hearing loss in one ear, about two years ago. He had surgery to correct this, but it didn't work. So, now he is wearing a hearing aide which is helping. At school he still uses an FM system. His hearing issues have continued to make his speech difficult and we are still working with that. He still wears glasses for close work and has a borderline lazy eye. Otherwise, he is healthy and getting stronger every year. Each year he seems to have fewer illnesses.

He is a real joy and blessing to our family.

A lot has happened in the past five years. Jess has graduated high school with an extended modified diploma. He worked with the football team for three years as their manager. He also was the manager for the basketball team for two years (one of which they were state champions!). Jess has played basketball in Special Olympics for several years. Jess and his date were elected prom king and queen senior year (that gives you an idea how well he can work a crowd!). What a great high school and high school experience! After high school he attended a program for two years called WINGS that focused more on life and vocational skills.

Jess is living at home and working to finish a 16 credit hour certificate in child development at our community college. He took one class a term last year. With help from us and his tutor, he has done quite well so far.

Jess' goal is to find a job as an assistant in a day care center. He loves working with preschoolers, and has been doing this at our church, at the Boys & Girls club, and other places.