Sioux City, Iowa (IA) - Mosaic trisomy 13

Update 6-22-07
Amber turned 10 on Fathers Day!!!!
Update for Amber - She is doing great - going into the 5th grade this fall and couldn't be happier. We have spent the last two days in the hospital which is a first for a long time with her because she has been doing very well. She has STREP of the foot- have you heard of such a thing. They think she got it from the lake we were at on her B-day. Anything weird and out of the norm will happen to her. But she takes it and runs with it :)

She is not doing OT anymore since "they" say she can do it but it is on her own time. We still have her tutoring though which that is helping out so much...

Jaylinn Courey,  jaylinnmk@cableone.net 

8-3-06

Mosaic trisomy 13, Amber turned nine this past June and is going into the 4th grade.  We found out that she had this genetic syndrome a week before she turned 6.  A BIG surprise but also a relief to know what was going on...She is a very high spirited girl and loves life to the fullest.

Amber was born about 2 1/2 weeks early nothing out of the ordinary about my pregnancy - everything was fine.  At birth there were a couple of things that weren't quite right – a skin tag on her pinky - a reddish purplish spot on her forehead, apnea, bad reflux  but nothing severe.  She had legg-cavle perthes when she was 3 1/2  still no idea.  We had her involved with AEA because she wasn't meeting her milestones.  

Amber went to preschool for 2 years and started kindergarten at 5 years at our Catholic school. We found out was her attention and her fine motor skills needed some attention...SOOOOO we put her on straterra and it was knocking her out and basically putting her to sleep.  We did a sleep test - brain test - then  they sent us to Omaha.  Doctors there their did blood work and that is when we found out she had Mosiac Trisomy 13 .

It’s definitely bitter sweet, she looks like every other 9 year old but physically and mentally she is not there with them.  Amber has great family and friend support -  presently we are dealing with  ADHD,  she has every sign of it but the meds have the opposite effect for her.  

Amber is involved in dance, loves to swim, and girl scouts.  She has OT 2 times a week and tutors but loves every minute of it!  Amber also has a younger sister (6) and brother(3) with no signs of trisomy 13.  One more interesting thing, she had two extra teeth - one on top and one on the bottom - but you can not tell with her beautiful smile.. :)

Jaylinn Courey,  jaylinnmk@cableone.net