Jackson

Age: 10.5 years
Duplication: 46, XY, dup(4)(pter->p16.3::p12->16.2::p16.2->qter)
Hometown: Milwaukee, WI, USA

Jackson was born July 30th, 2004. He was 8 lbs, 1 oz and 20" long. Everything seemed to be going well except feeding. J was taking anywhere from a half hour to 45 minutes to finish an ounce of formula. He was unable to latch to breastfeed because of a smaller lower jaw, but "they" told me it would come out on its own with continued feeding. I also noticed his left eyelid was droopy, but “they” told me that would resolve itself as well. Same story with his overlapping toes. I had a nagging feeling in the back of my head that something wasn't right. Every time I voiced my concerns, I heard, "Oh, it's just first time mom worries."

At 3 weeks of age, after ongoing weight checks, he was still under his birth weight and continuing to have trouble feeding. His pediatrician diagnosed him failure to thrive and ordered a chromosomal karyotype because of the lack of weight gain and his ears "looking a little funny.”
The karyotype results came back when Jackson was five weeks old. It was then we were told he has trisomy 4p, (12.1-16.2). We were shocked to say the least. Ultrasounds during pregnancy showed no indication of anything wrong.

After waiting several weeks to see the geneticist (with no help from that pediatrician; we started seeing a new one on the recommendation of my OB and we've been with her ever since) we were told he would most likely never walk or talk, have seizures and medical issues and be severely "retarded" (I hate that word). We were also told that we were one of 100 in the world and would most likely not find many others like us. Looking at all the fabulous faces on this page has resoundingly proved that wrong!

  
Jackson has been generally healthy. Weight gain has been his biggest challenge and he had a g-tube placed in 2006. He has croup episodes that land him in the emergency room for breathing treatments or an overnight hospital stay. He had a trigger thumb repaired and wore a DOC Band for 9 weeks due to positional plagiocephaly. He currently has issues with strabismus (wandering eye) and wears glasses to (hopefully) correct it. In July 2009, J was also diagnosed with mild-moderate autism.
 

Most recently, Jackson had two seizure-like episodes at school and after a visit with a neurologist and a 24 hour EEG, he was put on Depakote to control seizure activity in his brain.
 

In spite of all we were told in the beginning, Jackson is doing wonderfully well. He’s currently in 4th grade, loves spelling and reading, and spends most of his day in his regular class. He’s obsessed with garage door openers and has quite a collection, it goes everywhere we go. Orange is his favorite color and Bruno Mars is his favorite singer. He plays Miracle League baseball and can’t wait until it’s warm out, so he can “run the bases!” Jackson navigates the iPad like a pro and loves watching garage door installation videos. He loves hanging out with his brother and our two cats! 

  
Jackson is a pretty awesome kid!

Jackson’s blog is: www.microwavesrectanglesandellen.blogspot.com