WADENA, Minn. — On Easter Sunday, a bouncy, intelligent 4-year-old from Wadena tried his first Swedish meatball. Then brisket.
That may not seem like a big deal to those who don’t suffer from any gastrointestinal disorders, but for Oakley Wynn, who has been struggling to eat since infancy, there is great reason to celebrate his "little bites."
Last week Oakley joined his family in riding in the car through their fourth birthday parade. These birthday parades are the latest craze for those looking to celebrate someone’s birthday while maintaining social distance. Participants drive by with hoots, hollers, honking and sometimes drop off gifts for the birthday boy or girl. Several of these parades have even included fire trucks and police squads.
Enjoying the fun of the moment, Oakley told his mom he wished he could have this for his birthday.
Instead, parents Alicia and Bryan were excited to find a church friend of the family who wanted to surprise Oakley with a special parade Wednesday, April 22. His birthday isn't until November, but now seemed like the right time to celebrate the possible end of what's been a struggle for the family for years.
"Happy tears, happy tears," Oakley kept saying as many families he knew dropped by to offer words of encouragement. His older sisters, Macy and Bristol, and mom, Alicia, stayed at his side, hugging and cheering him on through the event. His mom asked why they were doing this and Oakley replied it was because of his "little bites."
Getting to this point was an emotional and physical roller coaster for Oakley and the family. And while they’re still not out of the woods, Alicia said the good days have overshadowed the bad days thanks to his progress toward eating on his own.
Bryan said the idea of Oakley asking to eat solid foods was absurd just a few weeks ago.
Oakley’s conditions include avoidant/restrictive food intake disorder (ARFID)— where a person does not consume enough calories to grow and develop properly — and inflammatory bowel disease, according to the Mayo Clinic.
With these conditions, Oakley saw food as pain. Just sitting down to a plate of food would cause him to vomit and then go into a meltdown.
“Throwing up is a strategy to make the food go away,” Alicia said she learned through various food eating programs the family has been through. Meanwhile the rest of the family was impacted by Oakley's response, too. Sitting down to a family meal was usually a stressful situation unless Oakley was getting his meal through the feeding tube.
During one particular food breakdown, Oakley quite maturely described his feelings were like a marshmallow in his throat.
“My feelings are stuck in my throat,” he told his mom.
The physical aspects of the disorder include his growth, which has been slow. He’s also had to learn how to eat — how to chew and swallow solid foods. He had to strengthen his jaw muscles after years of eating pureed food.
Trying to navigate through what was going on and being told over and over that he was just a picky eater weighed heavily on Alicia. She knew this was something more than stubbornness.
“When he gets good and hungry, he’ll eat,” is the advice she was given when she shared her struggles. “There is no truth to that — there was no getting hungry,” Alicia said. It wasn’t until the last year that Oakley first started expressing hunger.
Her anxiety rose as she saw little progress and often regression between visits with specialists. While it was less stressful for everybody to have Oakley on the feeding tube, the family had no desire for him to grow up dependent on it.
Visits to the medical facilities, which included about 15 trips to the Mayo Clinic as well as visits to a Fargo hospital, often brought on bouts of anxiety for Oakley. But the parents said those visits made a world of difference in helping them understand how to help their son.
Still, Oakley had to decide that he was going to be OK eating solids. After a talk with his parents on Good Friday, he maturely said he was going to give up the feeding tube. He wanted a cool scar where the feeding tube would be removed.
“He’s been a rock star,” Alicia said. “For what he has been through, this is a huge accomplishment.”
While he seems committed to the goal, he is under 5 years old. He must eat on his own for about six months before he can have his feeding tube removed. He’s had the tube in since about age 2.
While Oakley is making strides, the Wynns' 15-month-old Aspen is also going through a somewhat different gastrointestinal issue. She is about to be admitted into a feeding program as well. Oakley is determined to help his sister eat so she doesn't have to go through all that he did.
It appears Oakley will have to continue to be on two medicines long term to control his medical condition, however, Alicia holds out hope in the miraculous.
“We do believe in the power of prayer,” Alicia said.