Three and a half year old Onora concentrates carefully as she transforms her grilled cheese sandwich into a caboose with the help of a sandwich cutter. “It’s a train!” she announces, as she takes a big bite. “And it’s delicious!”

For many children, chowing down on a grilled cheese sandwich is almost second nature. But for children like Onora, who spent the first few years of her life receiving nourishment from a feeding tube, it’s a hard-won achievement.

Eating is one of the most difficult tasks to complete – more difficult than walking or talking – and it is a vital function for survival and development. Feeding Matters estimates that there are over one million children under age five nationwide with severe feeding disorders that disrupt many aspects of life including growth, cognitive development, physical strength, behavior, and nutritional status.

Children develop feeding issues, or oral aversions, for a variety of reasons and with varying degrees of severity. In Onora’s case, a defect in her abdominal wall caused her internal organs to grow in a sac on the exterior of her body. The condition is known as omphalocele. Yet as challenging as it was to treat, Onora’s mother, Kristen, said the toughest part was yet to come since Onora’s condition resulted in diminished lung capacity and severe reflux. Feeding without a tube was simply impossible. “I didn’t anticipate that gastrointestinal and feeding issues would be the biggest part of our journey so far,” Kristen says.

Seattle Children’s, where Onora was treated, recommended that she receive feeding and occupational therapy from Children’s Therapy Center. In anticipation of eventually weaning her off the feeding tube, Kristen worked with Onora’s occupational therapist, Joli, to try to preempt a food aversion. “We knew [an aversion] would probably come up, but we wanted to do what we could to lessen the severity,” she explains. “We dipped her pacifier and favorite toys in applesauce or baby food to get her to try it. Even just putting food on the table in front of her, and having her accept that it was there, was a big deal!”

Kristen says that one of the biggest challenges so far has been to avoid feeling discouraged. “You often feel like it’s always two steps forward, and then one really big step back,” she explains. “One day, you’re thrilled because you’ve found something that works and you say to yourself, ‘YES!’ And then the next day it doesn’t work anymore and you’re back to square one.”

For that reason she’s especially grateful for CTC. “We’re forever indebted to Joli,” she says. “She helps us keep perspective, and when we’re really feeling down she reminds us to look at the other wins we’ve experienced along the way.” They team up to revisit goals often and “we usually find something that we can get excited about,” says Kristen. “It’s also always helpful to be able to reflect over the journey in writing and talk through it. I can ask Joli anything!”

Today, Onora samples not only grilled cheese sandwiches but also Thai food, bacon, spicy burritos, and scallops. “Graham and I always expose her to what we’re eating and give her options to try,” Kristen says. “That said, her feeding journey is still atypical and may always be that way to some extent. But it’s funny – so many parents worry about their child eating junk food, whereas I’m just thrilled my child is eating anything at all!”

Being able to enjoy snack time with her peers at school was a big turning point for Onora, Kristen says. “She wasn’t eating much by mouth prior to starting school, so we weren’t sure what to expect. We put no pressure on her. We knew this was just a social activity to enjoy with peers. But she sat at the table with the rest of the kids and did it. I love that she can participate with her friends in something as social as eating!”

As Onora gets older, Kristen realizes she’ll need to allow her daughter more independence. “I have to partner with her now,” she says, “and let her make choices about what she wants to eat and when. That doesn’t mean I don’t prompt her or make suggestions, though. And I’m a mom. I always worry whether she’s eating enough!”

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