We are walking on behalf of our brave and remarkable little warrior, Ayrton Kenji. In the past year, Ayrton has been a rockstar, thriving and moving mountains with his strength and determination. Ayrton just celebrated a few major milestones in the last couple of months - his 2nd birthday on March 3rd, first 6-hour road trip to visit his grandparents in New Jersey, and a year of being home (without any unscheduled hospital admission - that in itself is a BIG accomplishment) after spending the first 333 days of life inpatient in the NICU and MSICU at Boston Children's Hospital.
Today, Ayrton is hitting all developmental milestones: walking, running, climbing stairs, and talking. He loves to dance, listen to music, read, give kisses, being out and about, and being a social butterfly. He is not afraid of anything, for the exception of going to the doctors and getting his blood pressure checked, and always willing to try new things. Ayrton amazes us everyday.
Ayrton has what is called a giant "omphalocele", a rare abdominal wall defect where organs (liver, stomach, intestines) from the abdominal form outside in the umbilical cord, and is often associated with other birth defects. Our fight began at 12week gestation when we learned of this scary and heart breaking new word at our first ultrasound. Thankfully, genetics testing cleared him of any chromosomal abnormalities.
In addition to his omphalocele diagnosis, Ayrton also has chronic lung disease and pulmonary hypoplasia, which requires him to be on 24/7 ventilation and oxygen. This added another layer of complications and countless days of uncertainties, heartaches and close calls the first 10 months of life.
Ayrton endured things that no baby should ever have to endure, but he never stops fighting, never stops conquering.
Ayrton had his omphalocele repair in July 2018, where he was paralyzed and heavily sedated for a month as they slowly "push" the organs in and "pull" the fascia (connective tissue) from his tummy so that they can close his abdominal muscle once everything settled in. It was a rough two months, but once again, Ayrton proved to everyone what a fighter he is. In October, he had surgery to put in a feeding tube since he doesn't eat orally and aspirates on thin liquid. We were told to expect a week long stay to recover. We only stayed the night and got discharged the next day.
Ayrton could not be where he is today without the exceptional care, expertise and support of the wonderful team of doctors, nurses, therapists and staff at BCH. We are so grateful to simply to be able to let him experience normal day life and activities at home.
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