- Tom Archdeacon columnist
Here are a half dozen things for which they are thankful:
“Sweet potatoes…mangoes…cotton candy yogurt…pizza…cherries….fruit cocktail.”
That was 3-year-old Samie Swank — wearing her Thanksgiving dress with the top-hatted turkey on the front, a bright orange bow in her hair and frilly white socks — going through the litany of things she likes to eat while she was playing on the living room floor of the family home in rural Darke County southwest of Versailles.
“And I like some mac ‘n’ cheese, too…and spaghetti…and broccoli….and peas.”
As she rattled off more and more things, her parents — Travis and Katie — couldn’t help but smile even though they still found it a bit incredible.
“For a good while we never thought we’d ever get to this point,” said Travis, the Versailles High School basketball coach. “She’s not eating quite normal yet, but she likes a lot of the same things other kids like. We’re just thankful for the strides she’s made.
“So, yeah, we’ve got a lot to be thankful for this year. A whole lot. Samie’s come a long way.”
That point was underscored in a conversation I had with Katie earlier this year when she admitted:
“We don’t know what normal is.”
The other evening, as you listened to and watched Samie — a vibrant little charmer who was playing with her dog Gus one minute and the next doing one-legged poses, called “stunting,” like her mom, a former Greenville High and Miami University cheerleader once did — Katie’s lament sounded like a fear fading into the past.
Up until a few months ago Samie had never eaten regular food. Any time she tried, she would get so nervous, so frightened that she’d gag and often vomit. It became a debilitating fear.
She was fed through a feeding tube and it was an exhausting process — six times a day, 30 minutes a session from early morning to late at night — that was administered by Katie.
For the first 18 months or so of her life, Samie cried constantly. Her care was so taxing that Katie quit her job at her dad’s car dealership in Greenville to care for their daughter.
She was a mom, a nurse, a soothing voice for a scared little girl.
“A saint,” said Travis.
Even so, last February Samie weighed 23 pounds. Her eating disorder also contributed to speech problems and you had to listen closely to understand her.
Worst of all, Travis said, she had no interest in food or a desire to eat.
Some of that, he said, was because she never experienced being hungry for anything. She was fed regularly through a tube in her stomach.
Much of this stemmed from bigger health issues.
Samie was born with a rare heart where the ventricles are flip-flopped — the left is on the right side, the right on the left. It’s called transportation of the great vessels, but hers is the “corrected version,” Travis said, meaning somehow the wrong mechanism was pumping the blood to the right areas.
There have been other serious heart issues, too, some of which Travis and Katie feared could be fatal. Her heart lies on its side rather than flat in her chest, there was a large hole in it and the tricuspid valve was too small.
That’s why when Samie was born at Cincinnati Children’s Hospital Medical Center in April 2014, they had their minister present to baptize her in case she didn’t survive.
Two major surgeries followed, one in Cincinnati to put a bind on the pulmonary artery to slow her heart rate and then eight hours of major repair work on her heart at the highly-acclaimed Boston Children’s Hospital.
That’s when she was fitted with a pacemaker. Because she’s so small it was surgically implanted beneath her rib cage. Once she gets 10 or so, they’ll move it into her chest.
As Travis once put it: “She went through a wringer.”
And then came a grueling two months this past spring at the Kennedy Krieger Feeding Institute in Baltimore.
Katie and her mother accompanied Samie. The trio lived in a hotel near the Baltimore Harbor and rode taxis to and from the clinic four times a day as therapists and specialists attempted to wean an often-fearful, sometimes-tearful Samie off her feeding tube.
It was an emotion-wrenching venture, not just for Samie, but Katie, who watched the morning-to-evening sessions every day from an adjacent room equipped with a two-way mirror.
“It was the hardest best thing I ever did in my life,” she said.
‘So attached to her’
The specialists who worked with Samie began by putting a spoon to her lips and waiting until she took it in her mouth.
“It was wild,” Katie said. “They just kept it there until she took a bite. Sometimes when she wouldn’t, they did these things called finger promps where they’d stuck a finger in her mouth until she did.”
If she resisted, they sometimes held back her hands. Sometimes she was crying. But they encouraged her with little sayings and praise and when she responded, they rewarded her with playtime.
“It was a tough time for her though,” Katie admitted. “She’d get so nervous before we went each day and she’d gag going there because she was scared.”
It was also tough for Katie, who — even though it wasn’t advised — watched every session through the two-way mirror.
“I’m so attached to her,” she said. “We’ve been through so much together I wanted to see what she was doing.”
With a shrug and finally a smile, she added: “But as she was learning to eat I couldn’t eat because it was so upsetting to me.
“It was really hard, but obviously it was worth it.”
As she was slowly learning to eat — pureed food, not solids — Samie’s speech also got clearer.
Through all this, Travis was back home teaching special needs students in Versailles. He brought the family out to Baltimore initially, then came out for Samie’s birthday in April and finally to pick them up at the end of the two months.
On the way home Katie said Samie suddenly gushed: “Look Mommy, there’s trees and grass.”
Travis laughed: “We were going through West Virginia. After all the cement and buildings, she was ready to come home.”
Enjoys the games
Last season was Travis’ first as the Versailles coach and the Tigers went 25-2 and made it to the regional semifinals of the state tournament.
A former Franklin-Monroe hoops star who played at Wittenberg University, he was named the Midwest Athletic Conference (MAC) coach of the year last season.
This year, led by the Ahrens twins — Justin, last season’s MAC player of the year who will head to Ohio State in a year, and A.J., a MAC first teamer and top football prospect — the Tigers should be strong again.
This weekend they close out the preseason with a pair of scrimmages — Jackson Center on Friday and Centerville in a showcase event at Dunbar High on Saturday.
“This year Samie should be able to go to most of the home games,” Travis said. “She made only two last year.”
Katie nodded: “She loves coming to the games, but she gets sick so easily. After all her surgeries, her immune system is not very good. And if she gets a cold, she gets a 103 temperature and croup real bad. She just can’t fight it off.
“But the good thing is we don’t have to worry about any upcoming surgeries or evaluations — like getting ready for Baltimore — that she can’t be sick for. So she can actually go do more things.”
Samie is still learning to feed herself — Katie mostly feeds her now — and almost everything she eats is pureed.
“It’s like feeding a newborn,” Katie said. “She still gets nervous. She doesn’t understand how to move her tongue around to move the food in her mouth. If she’s taking a bite, she actually has to have the food placed on her tooth.
“But it’s coming. And the more confident she gets, the better it will be. Then we’ll work on some speech therapy. Already when we got back, everybody said they could understand her so much better. Going through all that in Baltimore did mature her.”
If it made her more confident, it also made her even more expressive and active and sometimes pretty funny.
The other evening, after giving a couple of poses with her new Halloween dress, she proudly proclaimed: “I smell good.”
“She just had a bath,” Katie said shaking her head and laughing.
Today the family will take in a couple of Thanksgiving celebrations, including the big family gathering — some 60 people, Travis said — held every year at the old Franklin-Monroe High School.
“Oh yeah, there’ll have quite a spread there,” Travis said.
And soon Samie began her litany again:
“I like chocolate pudding…and milk…and Coke…and…aaah…coffee!”
“Coffee?” Travis said. “What are you talking about?”
Katie laughed: “My mom loves coffee. And when we were in Baltimore, she had coffee every morning so Sam had to go smell it. She liked it.”
Samie agreed: “I smelled Grandma’s coffee.”
And that’s progress.
Now that she’s finally stopping to smell the coffee, Samie’s found she likes the taste of food, too.
“That makes us thankful,” said Travis. “Real thankful.”