My PFD Journey: Jax

Published by Amber Mieras, Family Advisory Council Chair on Dec 07, 2023

Meet Amber and Jax Mieras. Amber is the Pillar Chair for Family Support and is also the devoted mother to nine-year-old Jax, who has Down syndrome. We invite you to join us on their PFD journey and follow their compelling narrative describing the intricacies of Jax’s care. Read Amber’s introspective reflections and see the inspiring results of parent directed care.

Chapter 1

I am the proud mother of two kids, Nayeli, 5, and Jax, a 9-year-old boy with Down syndrome and PFD. I found out while I was pregnant that Jax had Down syndrome but had no idea that eating struggles would end up becoming the biggest challenge we would ever face.

Jax had his first diagnosis of failure to thrive at just eight days old, and then again at 4 months of age. After four months of dream feeding, counting milliliters, watching the clock, and witnessing Jax’s struggles, we knew he needed more help to get nutrition. We consented to a nasogastric tube and fourteen months later, Jax got his gastrostomy tube. He could not eat what he needed by mouth alone.

Over the next nine years our family was on a mission. Our goal was not only to help Jax become more comfortable around food and mealtimes but also to better understand the root cause of his oral aversion and PFD. We were determined to find ways to support both him and our family through this challenging journey.

For several years, Jax had weekly feeding therapy at a nearby children’s hospital. We observed periods of progress followed by significant setbacks. Despite the therapists’ dedicated efforts to explore various strategies and approaches, nothing seemed to stick.

When Jax turned 5, we participated in an intensive outpatient feeding program, with little improvement. The following year, at the age of 6, we enrolled in an intensive inpatient feeding program, only to be discharged 24 hours later due to the COVID pandemic.

For the next four years, we navigated our PFD journey the best we could. We transitioned to a new feeding therapist, continued to educate ourselves as best we could, adjusted medications and formulas, and continued to find ways to entice Jax to eat each day. It was exhausting not only for Jax, but for our entire family.

About six months ago, during a gastroenterology appointment, our doctor asked if we would be interested in trying the same outpatient program at the same hospital that had yielded limited results five years earlier. I was not expecting this. In fact, I had an evaluation scheduled in six weeks for the same inpatient feeding program we had been exited from during COVID. I realized we had a unique opportunity on our hands.

We had five years of growth, food exploration, development, and maturity on our side, while the hospital had five years of adjustments, learning, and experience on their side. I cancelled our inpatient feeding program evaluation and decided to give the outpatient program another try, but this time, I wanted to prepare myself for each step of the journey.

I reached out to friends, therapists, doctors, and various people at Feeding Matters to help us prepare for our program evaluation as well as our next steps. Their collective insight gave me a fortified view of how this experience could be different.

Follow the next chapter in Amber and Jax’s story by visiting our blog regularly. Updates to come!