Jaxsen J.
Illnois
Birth Date - August 4, 2011
Diagnosis - Trisomy 9 Syndrome
Theme: DISNEY CHARACTERS
These ONLY: Beauty and the Beast, Little Mermaid, Aladdin, Snow White, Cinderella, Peter Pan, Tinkerbell, 101 Dalmatians, Jungle Book, Bambi, Dumbo and, by special request, Doc McStuffins
Due Date: 1/1/18
Jaxsen's Story
Jaxsen was born by emergency C-section at 35 weeks and weighed 3.3 lbs. As soon as she was born, the doctors noticed her small jaw and other indications that she may have Trisomy. They did blood work, and the tests revealed that Jaxsen had Trisomy 9 Mosaic.
She spent three months in the NICU before I got to bring her home. Fast forward to 15 months old. She was doing so well. Then she coded 5 times due to severe GERD. Jaxsen was intubated for over a month, just so the airway could heal, as it was burned all the way to the trachea. The doctors couldn't even do an emergency tracheotomy until the swelling went down. She was in the hospital for three months while she healed. During that time, she received a tracheotomy, G -tube Nissen surgery, and was weaned off all the medicine they had her on.
Today Jaxsen is almost 6 years old and stable! She's starting Homebound 1st grade. She is still nonverbal and cannot walk, but she is my hero.
"I would like to thank everyone that worked their magic on Jaxsen's quilt. I can't describe the feelings when I opened the box. My heart's so happy!"
