Boston Slagle was born in 2022 in Grand Island, Nebraska, to his parents, Joni and Jonathan, and is the third of four children in their blended family. He experienced a short NICU stay, but in all other ways, Boston’s parents were excited to be caring for their healthy baby.

At four months old, Boston began experiencing developmental delays and missing milestones while also developing torticollis, a neck condition where his head began to twist to just one side, along with a flatter head shape. Joni saw that he continued to regress as he was no longer able to hold up his head, was losing his hair, and felt, as she shared, “he was just like a newborn baby again.” After being seen by local doctors, Boston was admitted to Children’s Nebraska in Omaha and received a failure-to-thrive diagnosis.

An Illuminating Diagnosis

Following a series of tests, the team at Children’s finally determined that Boston was experiencing oral aversion, a form of eating disorder. Boston received nasogastric (NG) which turned into a need for gastronomy tube (G-tube) to help him receive the nutrition he desperately needed.

His treatment path was working well until Joni noticed Boston was experiencing motility issues, seizure-like activities, and labs that just didn’t quite add up. Boston’s care was now being supported by a geneticist, physical therapist, and speech therapist, but Boston reached a point where Joni and Jonathan knew they needed “to do something drastic to save our son and help him progress.”

Joni and Jonathan took the leap and applied for the Pediatric Feeding Disorders Day Treatment Program at the University of Nebraska Medical Center’s Munroe-Meyer Institute. This all-day, five-days-a-week intensive in-person therapy program provides five meals a day over about eight weeks of treatment.

Boston was initially only able to eat about 10% of his daily calories by mouth. He had a long way to go, as he needed to reach 85% to be eligible to have his tubes removed. Upon learning of Boston’s acceptance to the program, the Slagle family returned to Omaha that August to begin their stay at Ronald McDonald House Omaha and his first round of therapy.

Adjusting to A New Normal

Boston, Joni, Joni’s mother, Grandma Patty, and Boston’s eight-month-old sister, Elowyn, stayed 135 nights at Ronald McDonald House Omaha while Boston received care. When asked about how the Ronald McDonald House became a part of her family’s experience, Joni shared that “[the House] became the whole experience.”

When Joni first envisioned staying at the Ronald McDonald House, she “expected to go there and have it almost be like a motel, and just in and out.” Instead, she was greeted with warm beds, hot showers, homemade meals, spaces for her kids to play, haircuts, places to relax, and a community of other families just like hers.

Joni appreciated the details to “make this better, from the beds to the layout of the room… little things that make it more home, more personable, more comfortable, which really meant a lot to us at the end of the day.”

Kitchen Connections

The kitchen remains a special place for Joni, both at home in Grand Island and at the Ronald McDonald House. Joni remembers watching fellow moms spend early mornings and late nights in the kitchen after days full of appointments, doing everything they could to support their families. Joni noticed “how they had everybody to help each other,” and it was “a huge moment that stood out to her.”

Joni welcomed “[families] who came in that [were] new” and greeted them saying, “‘Hey, sit with us!’ It just became a very home, very family-like place, very quickly… that was very dear to me because I struggle with not having routine and connecting with people. I struggle when I don’t have that, and knowing I had that from the jump really made that transition and rough patch we had in the beginning so much easier.”

Finding Friendship & Fun Among the Chaos

No one understands the Ronald McDonald House experience quite like the other families staying in support of their children.

One of many of the special moments and people that stuck with Joni throughout her family’s visit was spending time with the Spores Family supporting their eight-year-old son Aidenn alongside their two younger children. Joni quickly found comfort through their friendship as “they were always so close to us.”

“[Boston] just loved playing with other families’ kids all the time. He loved just the whole place itself, just became very home-like and very nostalgic for us very quickly.”

Joni also fondly recalls the annual Holiday party last December. She anticipated a small event with “cookies and maybe a goodie bag” and instead walked into a full experience with Santa and therapy horses dressed like reindeer, a full breakfast, and kids, including Boston, running around with joy abounding. For as hard as this season has been for the Slagles, they experienced unexpected holiday magic despite being far from home.

Looking Ahead

Joni remembers Boston’s struggles to grow for so long from finding his gross motor skills to speech development and now cherishes his progress as “he’s really catching up for all that and [we’re] excited to see how big he is.” Boston is now home and doing well alongside his siblings and parents.

Through the progress he’s made, Boston is on track to hopefully have his feeding tube removed by kindergarten. Although that’s a couple years down the line, Joni is thrilled to share that it’s a huge accomplishment to get to this “point now where he’s eating typical to kids his own age and… you can tell his brain development has now transitioned to pre-school age.” Boston often shares how he wants to come back to “Ronald Donald.”

At one point, Joni and Jonathan envisioned a future where Boston would continue to need feeding tube support into adulthood, but they’re now “hopeful that he can get that feeding tube taken out and he can be like every other kid and play sports and run and jump on the playground without fear.”

“We just really want to say thank you to everyone for making that possible, because these are hard times, and knowing that that place was so well thought out from top to bottom, and the way everything’s ran daily, just really kept a lot of stress off of us as a family.”