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.
- 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.
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.