Community puts on parade to rally around a boy’s health
On Easter Sunday, a bouncy, intelligent 4-year-old from Wadena tried his first Swedish meatball. Then brisket. He tried them with condiments and he enjoyed them all.
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. They simply drive by with hoots, hollers, honking and sometimes dropping 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.
Filling the parking lot at the softball complex in Wadena were about 20 cars, five fire trucks (including Wadena and Hewitt) and sheriff and police squads just before 6:30 p.m. They soon exited and passed by Oakley’s house in a parade, turned around and passed by once more dropping off some goodies for the little trooper.
"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 towards eating on his own.
“I've never cried so many happy tears in my life,” Alicia said of her son’s health progress in recent weeks. Bryan shared that the idea of Oakley actually asking to eat solid foods was absurd just a few weeks ago. But now for 10 days prior, he said Oakley has been doing just that.
"To be eating three times as many foods within 10 days as he had been is amazing," Bryan said. The family was told that foods with a lot of texture and flavor were going to be a battle, but it's been relatively battle-free in recent days.
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 - a condition that can cause long-lasting inflammation and sores (ulcers) in the innermost lining of your large intestine (colon) and rectum, 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 getting on occasion 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 very 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 of Oakley since that moment. “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.
Alicia was overwhelmed by the parade and what she knew it meant for Oakley. She said the extra attention on him was a big encouragement to help him continue to make progress.
“It’s super cool, it's one of the best parts of being in a small community,” she said.
The day before the parade was Alicia’s birthday. She said her son’s growth has been an answer to many prayers and is the best birthday present yet.
“We know it's because we’ve had so many people praying for him,” Alicia said.
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.
The Wynns have been through much of this already with Oakley. They are already hooked up with the right specialist, one of which is the kids’ primary physician Dr. Joshua Chapman at Perham Health, who specializes in pediatrics. Alicia said without Chapman's help the family would likely still be looking for answers.
Alicia looks at all that has happened and all the stress and realizes now, after all the tears, prayers, hospital visits, research and trials that the family has been through, they are now able to share some of their knowledge with others that may be going through a similar situation. These are rare eating disorders, but Alicia has already reached out to offer her support to some moms that have been seeing similar behaviors. Bryan said Oakley's disorder is seen only about once in every 250,000 from kids ages 6 and under.
Alicia said parents commonly deal with struggles in raising healthy kids. She says it comes down to how much you want to advocate for your kids. While some parents know something is wrong, she has seen many avoid getting their children help because they don’t want their child to have a label. She gets that.
“I also don’t want my kids struggling for years,” Alicia said. She said it comes down to your priorities. All things considered, Alicia said she is happy and blessed.
“We are very fortunate that we have four pretty healthy kids,” she said.
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.
As COVID-19 closures continue, the family is mostly confined to home and playing in the yard aside from the occasional birthday parade. Bryan works at Russ Davis Wholesale and enters the family’s basement after work each day to shower before he has any contact with the family. Because of Oakley’s condition, he is immunocompromised, so the family has always been cautious. Even more so now under the threat of COVID-19.
“We just do the best we can, but we also don't want to live in fear,” Alicia said. “We pray for everybody because we don’t want anybody to get it.”