by Denis and Janice
What an exciting day it was – Dec 3, 2003 – when we were expecting Jordan to be born. She had other plans though, and decided to take a little longer so she was born Dec 4 at 11:55 p.m. after a 40 hour labour. We had no idea at that point of the hint she’d given us that things might just take a little longer with her! We were consumed by how beautiful she was, and how content she seemed. On the evening of December 5, she started to experience some pretty severe respiratory distress, and at that point one of the nurses noticed that she had a cleft palette. Very quickly we were on our way to Children’s Hospital in Winnipeg, following the ambulance with our new baby. One of the doctors we met was head of the Genetics department, and he talked to us about our family histories and took a blood sample from her in order to look for a hereditary cause of the cleft palette. After a week in hospital we were able to head for home.
Sometime in late January we received a letter asking both parents to get blood samples taken and sent to Winnipeg for analysis. I remember telling Janice “I don’t like the sound of this”, but we went and had it done. The Wednesday before Easter, 2004 we met the doctor and he told us about this extra piece of genetic material Jordan had, that it was a significant amount from the 15 th pairing, and that it would cause her profound developmental delays. There wasn’t much more information other than neither of us were carriers, and there was no reason other than it being a “biological fluke”. He directed us to the www.idic15.org (now www.dup15q.org) website. We were both crushed. How could this happen? What are we going to do? What does the future hold?
The first year was rough. Jordan started having infantile spasms in June and was given ACTH until September to bring them under control. I learned to give her the medication by injection in her leg, and Janice worked the comforting afterward. We were fortunate that they came under control and she’s not experienced any seizure activity since. If anyone ever tells you a story about someone on steroids being edgy and hungry, believe it. We spent the whole summer walking Jordan in a stroller because that was the only time she was awake and didn’t cry. She was drinking a case of formula every 6 days on top of Janice’s breast milk that she pumped several times a day. The little critter wasn’t so little anymore! Although the ACTH worked quickly it was heart-breaking to see Jordan’s skills regress due to the spasms. In November she had surgery to repair her palette, and in many ways we are grateful that this condition led directly to an early diagnosis of the chromosome abnormality. That allowed us to get started on learning and therapy at a very early age.
Jordan has progressed well, although slowly in her development. We accepted quite early that milestones for her are not tied to age, but to ability. She started crawling at 14 months, and walked just before her 2nd birthday. The hypotonic muscle tone, especially in her core area has been a challenge, but she keeps trying. She’s not nearly the wobbler that she once was, and she can flex herself in ways that would put some kids in traction. She loves to climb … on the bed, on the furniture, on mom and dad, it doesn’t matter to her as long as she can climb. She also loves to hang upside down from the furniture, and can stay that way for a long time. She does love motion – jumping on the trampoline, swinging, being spun around in the fireman position, to name just a few ways.
One of the great things about Jordan is that she is an extremely happy child. She loves to laugh, and can get a whole room full of people rolling. Her joy is infectious. Although she can’t speak a word yet, she’s learned to communicate her basic needs and wants through some signing, the use of PECS and more recently we’ve started with communication tools for the iPad. That has reduced her level of frustration immensely. We’re also working on potty training and hope that she’ll be able to let us know when she needs to go to the washroom.
Jordan goes to public school and functions with the help of educational assistants. She is in a modified program, but has learned to recognize numbers from 1 to 10, can identify many of the letters of the alphabet and knows colors and shapes. This last year we’ve seen real progress in her ability to recognize her surroundings, situations and peers. She has friends that she plays with and everyone in the school knows her. She really has a way of endearing herself to others through hugs, playing and singing. Music is a big motivator for Jordan, and she can hum about 4 dozen songs and nursery rhyme tunes.
Jordan has a younger sister, Stevie whom she loves very much. Stevie is very attached to her sister too, and this gets noticed by her teachers at school. For a small child, Stevie has an amazing amount of insight and empathy for Jordan and makes us proud with the way she helps at home and at school.
The past eight years have certainly presented us with challenges that we never imagined when we first became parents, but something else happened that we never expected as well. We met the most amazing group of families from around the world with children like Jordan. We have friends all over the place who can relate to our family, and we’ve been fortunate to attend conferences where we’ve met some of them in person. Jordan continues to teach us something new every day, she continues to develop and we couldn’t be prouder of the person she is.