Monitoring our son’s nutrition can be extra challenging during travel
We're always focused on making sure Finley gets enough to eat
Life has been busy in our household. School has been in session for over a month, our oldest son is playing fall baseball, and we recently took a 10-day trip to New York for my brother’s wedding.
Our boys, Jackson and Finley, had an amazing time. It was by far the longest they’d been away from home. They loved exploring new places and dancing at the wedding. But for Finley, who was born with Alagille syndrome, a long trip like that can throw off some of the routines that are important to his growth and development.
Because of his liver disease, Finley has trouble gaining weight. Nutrition has been the major focus of his Alagille treatment over the last few years. I’ve written previously that I worry about whether he’s eating enough. Parents always worry about feeding their kids, but with a rare disease diagnosis, it’s hard not to hyperfixate on food intake. Thankfully, Finley is a good eater on most days, but when we’re on vacation, the food is less familiar.
Like most 4-year-olds, Finley loves his snacks. If he had his way, he’d live off of them exclusively. Because we mostly eat out while we’re traveling, we worked to limit snacks so he could focus on the main meals. But that’s easier said than done when you’re exploring the American Museum of Natural History or Central Park. By the time we got to dinner, he wasn’t a willing eater — a frustrating situation, as I knew he was hungry and needed food for energy.
From left, Finley and his brother, Jackson, prepare for a New York adventure. (Photo by Jay Sandstrom)
Though food was a bit of a struggle throughout the trip, our family still had an awesome time. It was a good reminder that, even though food is extra important for Finley, he will let us know when he needs to eat, just like any kid his age. We want our boys to eat on a schedule, but the truth is, they know how much they need. And when you’re on vacation and your normal routines are completely upended, it makes sense that a child would rely on the snacks he’s most familiar with.
Finley did lose a few pounds on our trip. This would have given my wife and I a lot of anxiety when he was younger, as every bit of growth is a hard-fought victory with Alagille. Seeing his weight go down can be demoralizing and worrying. But we’ve been home a few weeks now, and Finley’s weight is higher than it was before our trip.
While we do need to focus on his nutrition and growth, this was a reminder that Finley’s weight won’t only chart up. There will be ups and downs, gains and losses, and that’s OK. Finley is doing great, and I cannot wait to see how he continues to grow.
Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.
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