|Diagnosis||Distal 10q 25.3, de novo|
|Parents||Daryl and Leslie Anderson|
|City||Corvallis, OR, USA|
|daryl [at] darylanderson [dot] com|
The Journey - Sept 25, 1998
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.
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.
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.
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.
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.
Jess uses a service in town that serves disabled adults. The service provides multiple social outings each week (dinners, hikes, etc.) which he partakes of. The service also provides transportation for him to and from work. So, he is very independent with his job, and a lot of his socializing. By the time we are out of bed, he’s gotten himself ready, had breakfast, fed his cats, and gone to work. On the way home, he often gets them to stop by a doughnut shop where he brings home six, and not to share! The service has also been training him on how to use Lyft for other times he needs transportation.
He is currently doing Special Olympics basketball, which he has done for years. He has started volunteering at the Boys and Girls Club, helping with a basketball tournament. He continues to be very healthy, and his hearing is stable, still requiring two hearing aids. He loves going out with his grandpa on Saturday mornings for breakfast or doughnuts. What a life!