Jack’s Story

A cheerful toddler sitting in a high chair with a plate of food in front of him. The child is happily grabbing handfuls of food and putting them into his mouth with a big smile on his face.

The medical world is very good at putting G-tubes in children who need them but, unfortunately, they have no plan ever to get them out. It was important for me and for his quality of life to become an oral eater whenever he was ready.

Growing independent eaters understood this world and gave us a weaning plan to safely and effectively wean Jack towards eating by mouth. I remember crying on my first phone call because I finally felt heard. I took six weeks to wean Jack from 100% g-tube fed to 100% oral feeds. And let me tell you; it was the hardest six weeks of my life.

I watched as he would refuse to eat, as I cut his calories on purpose to induce hunger, as I watched him lose weight, but I trusted my instincts and leaned on my GIE team for support. I had to expose Jack to positive, happy feeding experiences without him realizing how much anxiety and fear I felt inside. I remember crying the first time he drank an ounce from a bottle and the first time he allowed a spoon near his mouth again.

The hours we spent in feeding therapy, swallow studies, etc., all while raising a toddler at home, seemed like it would be easier just to keep him tube fed. It takes commitment, discipline, and faith- all of which were being tested for me during this time period, and I’m so thankful to have had support from GIE during those very testing times.

Those who haven’t lived it will see a kid who was g-tube fed, and now he is an oral eater. To those who are living it currently seeking hope in their child's story towards oral eating, there is hope. GIE was the start of our hope, and I’m forever grateful for their plan and support. Jack is now a thriving 2-year-old and is a very independent eater! (& drinker)