MORAN – On his third day in this world, Kason Botts “coded” – medical slang for a stopped heartbeat.
“We knew he wasn’t off to a good start,” said his mother, Kelci. “The first 48 hours he wouldn’t eat.”
It was the start of a harrowing barrage of tests and scans until a neurologist confirmed the infant had Prader-Willi, a little-known condition that has multiple symptoms including a high pain threshold, poor muscle tone, and an eventual reversal of his oblivion to hunger to where Kason will not be able to realize he’s full and possibly face a lifetime battle of obesity.
Kelci and her husband, Jason, take their first-born’s diagnosis with equanimity. “I’m glad he’s our first. We don’t know any different, so it’s easier to go with the flow,” Kelci said.
The couple avoids reading Internet blogs or other unsubstantiated postings that do more to intensify their fears than assuage their doubts.
“My doctor gave us two sites that he recommended we visit on the Internet,” Kelci said. “Otherwise, we’re seeing what happens and deal with it then.”
At 5½ months, Kason is a happy child who is typical of a 3½ or 4-month old. He weighs a little over 11 pounds.
Because he can’t sense hunger, Kelci and Jason feed Kason every three hours and are careful to record the exact amount he eats. He requires a special – and expensive – formula that is high in iron and protein. He also receives daily injections of a growth hormone because Prader-Willi children are typically shorter of stature and also reach puberty at a later time.
Kason can hold up his head for short periods of time. When placed on a blanket he’ll frequently arch his back so much that he’s looking at the world upside-down. Two weeks ago, he rolled over for the first time.
Sessions with Vickie Snavely, a physical therapist through ANW Cooperative and LuAnn White with the Birth to 3 program out of Greenbush Educational Center have helped Kelci and Jason learn how to provide muscle strengthening exercises for Kason. Three times a day either his parents or child care providers put Kason through a routine of exercises.
In January, he may be ready to begin occupational therapy where he’ll begin working on fine motor skills.
KELCI takes Kason to Imagination Station Daycare in Uniontown on her way to work at Erie High School where she teaches math. Jason works for the Union Pacific Railroad out of Moran. The Botts home is in rural Moran surrounded by pasture where they have cattle grazing.
Their days start early and last long.
“We’re up at 5 a.m. and out the door by 6:15,” Kelci said. It takes Kelci one hour to make it to and from work. Most days she arrives home at 6 p.m. Jason picks up Kayson from daycare around 4:30 in the afternoon.
Besides teaching, Kelci, 28, is also a sponsor for KAY Club and Fellowship of Christian Athletes.
As of Wednesday, she stepped down from being head coach of softball.
“There were a lot tears from the girls,” she said of her close-knit team. “But it’s important to be with Kayson as much as I can.
When she arrives home, Jason takes the opportunity to go feed their cattle and do other chores around their spread.
The couple have been married three years.
They have much in common including rural roots and being athletic.
Kelci, a native of Yates Center, was headed to Allen County Community College on a softball scholarship but a knee injury prevented her from ever playing. After she graduated from ACCC in 2004, she attended Oklahoma Panhandle State University in Goodwell, Okla., where she double-majored in education and health, physical education and recreation.
“I could be a P.E. teacher or run a rec center, but I prefer teaching math,” she said. Come summer she’ll resume her pursuit of a master’s degree in math from Pittsburg State University.
“I’m halfway through,” she said.
Because of their athletic natures, Kelci worries that as parents they’ll push Kayson in sports.
“I worry about the coach coming out in me,” she said. “That I’ll push Kayson too much and want him to be ‘normal.'”
That heartbreaking honesty is what endears Kelci to her friends and family.
It took her three days to talk with her older sister, Cherielle Young, after Kayson was born.
“I didn’t want her to feel bad for me,” Kelci said. It also so happened that only eight days later Cherielle gave birth to a son – wonderfully healthy.
“We were in the neonatal intensive care unit at Children’s Mercy for 3 1/2 weeks,” Kelci said of those first few weeks. “I wanted to feel happy for Cherielle, and I was happy for her, but I was also battling our own situation with Jayson.”
It’s also not lost on Kelci that four of her students at Erie High School are either pregnant, or have recently had babies – again, perfectly healthy.
“We did everything right,” she said. “We dated, got our educations, married and then planned for Jayson.”
So to see teenagers entering parenthood at such tender ages – opens the door for prayer.
“Oh yes, this has strengthened my faith,” she says of the challenge. She and Jason attend Faith Christian Center, south of Fort Scott.
The nondenominational church has a “cowboy flavor,” Kelci said, where Jason feels comfortable wearing jeans and boots.
“The congregation has been a source of strength for us,” she said. She likens it to her home church, New York Valley Church of God in Yates Center, and mentions two couples, especially, “who have adopted us.”
Outside of the church, Kelci said she has a “very good support system.”
Kelci is the daughter of Cindy Adams, Yates Center, and Don Adams Jr., and his wife, Karen. Jason’s parents are Darrell and Clearsia Botts.
She also belongs to a support group, which is “an absolute blessing,” she said.
Despite her strong network of family, friends and students, Kelci feels she can better relate with other mothers of special needs children.
As the mother with the youngest child, Kelci said she’s the one “with all the questions,” of the support group that meets monthly.
Kelci’s good friend, Amy Welch, invited her to join the small group of mothers.
“I knew Amy in high school when we were arch rivals on the field,” Kelci said of Welch who was then of Humboldt. “Off the field, however, we were best of friends.”
Kelci recalls after the first meeting of the support group she came home, crying.
“I felt such relief,” she said. “I was so incredibly happy of being around other mothers who understand how I feel.”
Kelci also gets support through her posting on the Caring Bridge website where she has numerous pictures of Kason and updates about his progress. The guestbook on the site has hundreds of postings from family and friends, including some from Kelci’s students at Erie High School.
“They’re also nagging me to put more information up about Kayson,” she said. “I’m touched by how some of them truly care. I also figure it gives them good exposure to what it’s like to have a special needs child.”
In the short time since Kayson’s birth, Kelci’s gained a lifetime of knowledge and been tested by the challenge of a special needs child.
“I feel old,” she said with a sigh.
With perfect timing, Kayson gives her a smile and all is right with the world.
