Monday, June 25, 2012

SOFT

There is a genetic condition that my nephew Emerson has. It's called Trisomy 18. Only 10% go on to make it past their first birthday.

Guess who turned one on the 23rd? My nephew Emerson.


He'll always have problems. He'll always be loved.

I got him a Super Emerson romper.

Some of the things little Emerson has gone through:
  • Apnea spells when he was tiny. He would just stop breathing.
  • He had an O2 tank for most of his life.
  • He had an NG tube for feeding. My sister pumped and has given him her milk this whole time.
  • He had jaw surgery. Most babies born with Trisomy 18, also known as Edward Syndrome have too small of the lower jaw. He had to go on a ventilator for this. That was a scariest part! Coming of the vent was super scary! They over extended his jaw. The hardware stayed in for a few months. Taking the hardware out took awhile. Having jaw surgery allowed him to eat and breath much better!
  • He had his diaphragmatic hernia fixed.
  • He had his adenoids taken out.
  • He had tubes put in his ears.
  • He was born with a club foot. That has been bent, cast, bent, cast over and over again. Then he wore a brace.
  • He now has a G-Button, which sits in his stomach. He gets feed through that. It's more permanent than his G-Tube that he kept pulling out. He does eat, but still gets feed through the G-Button as well.
  • He now has to wear a patch on one eye for 3 hours a day. This will help his lazy eye. 
Emerson continues to go to physical therapy. He's learning how to walk on a baby treadmill. His neck has and is weak. That's something they continue to work on in physical therapy.

Happy Birthday Little Emerson!

If you would like to help support the families and kids that have Trisomy 18, you can donate to Soft Organization!

From Their Website:

Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) is a non-profit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children.

1 comment:

Rita said...

This post is both well done and necessary. Trisomy 18 was something I knew nothing about until a year ago when we learned my niece was expecting a baby that would be born with it. My niece gave birth last fall. Her son only lived a few hours.

I am delighted to learn your nephew has passed his first birthday.

My daughter was born with club feet and spent several years being treated at a shriners hospital. She will be forty-two soon and has had few problems since completing her treatment.