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Luca's Story

Our son turned two years old today! Two years! He was born with (very rare) Long Gap EA that they were unable to repair at birth as the 'missing link' was too long. The repair was done with a colon interposition around his first birthday. So he was tube-fed since birth, first with pumped breast milk, and later with Blended Diet. His whole medical team was not supportive of his mommy who was waking up EVERY day, thinking that THAT day would be his last day on 100% tube feeds. They said it was crazy! They said it was a bad idea! They said not to wean him! They said those kids have tubes for at least 5/6 years! But the more they said that it was IMPOSSIBLE, the more stubborn I got.

Looking for answers in a world where few children were repaired with the technique our son had, it turned out that our son showed us the way. And we followed him…with baby steps, without help from doctors or dieticians, and stuck at one point because he was just NOT hungry. He would eat like a mouse.

The day I wrote my first e-mail to GIE was the first day of the rest of our (and Luca’s) life. They guided our family (transatlantic) through the wean. A fast wean! Because the day we signed with GIE, Luca started to eat! They helped us to decrease feeds (safely) again and he took off! He was fully weaned in 4 weeks! He was ready.

We have been fully weaned for 8 months! And it’s still a daily struggle -- not for him, but for me. The anxiety I feel when he decides NOT to eat his plate, when he throws his food on the floor to feed the dog, or when he rejects the three (safe) foods I offer him. I try not to let him “graze” through the day, not to count the calories in the back of my head or to force-feed him one last bite. Already eight months ago, I let go. And I repeat, over and over, the mantras that our Parent Coach helped us with. Because I was holding on to that tube like Dumbo onto his magical feather. My son could fly, but he didn’t know. He needed trust.

“He knows what he's doing. Ups and downs are natural and good.”

“Be crazy and see if you can let that tube feed go. Start with 1 single day! Because it's an anti-anxiety pill for you, but it's still interfering with full, normal functioning of appetite. As if someone were to feed you soup and a sandwich every day.”

“Let go of that tube and let him fly free.”

And since that day, I sing the “Frozen” theme song. Daily.