“We never quit”

By Sun Advocate

Little Katelynn Huntington sat under the Christmas tree, rolling her baby angel back and forth in its stroller as she sang a quiet melody. Her mother and father, Nicole and Boyd Huntington sat calmly and shared a story of determination. This is more than a story about a precious child, it’s the story of a couple who beat all odds and continue to do what they need to help their baby daughter grow through her significant disabilities.
“We are a team and it’s important that we work together as a team to make sure all her needs are met.”
Katelynn is now three years old and has had nine major surgeries in her short life.
Throughout most of Nicole’s pregnancy she had toxemia and during her 27th week of carrying the baby she was admitted to Utah Valley Regional Medical Center. During her 10-day stay at the hospital she began to develop kidney and liver failure. And then, 11 weeks early baby Katelynn was born, weighing only two pounds, one ounce and measuring in at 13 inches long.
However, despite her size at birth the baby was rated high on an APGAR score. But two weeks later her little body began to crash. Her blood pressure came down and she needed medication to get it up. Because of the high dosage of medication and because the blood pressure was brought up so fast it could have caused her brain to hemorhage, resulting in hydrocephalus. From there the baby got pneumonia and received her first of four brain surgeries a day before her first month birthday.
The omia reservoir was installed allowing the pressure in the brain to be relieved.
As Nicole, who had been working at the Housing Authority and Boyd, then a truck driver for Savage, began to get overwhelmed with medical terms they had never heard of before.
She came out of the first operation well but a month later the omia became infected causing it to be removed which was her second surgery. She was diagnosed with spinal meningites at that time, an infection that inflames the nerves in the brain and spinal cord. At this point the tiny baby became extremely sensitive to touch, light, and sound. “A lot of cases are fatal at this age,” says Nicole, explaining that because Katelynn was still in the hospital they caught it immediately. A week later they installed a shunt.
Things went well for the next two weeks, until her little brain began swelling again and another surgery was required to revise the shunt. After that Katelynn began to gain weight and after three and a half months was able to come with her parents back to their cozy little home in Helper.
It was at this time that Carbon County’s early intervention program became involved. Registered nurse Debbie Wells was one of the Huntington’s first contacts and began seeing little Katelynn on a regular basis. She needed to be weighed weekly.
By this time they had diagnosed the baby with a moderate case of cerebral palsy, which is a neurological disorder. This would cause her to have eating problems immediately and also prevent her from having smooth natural movements of her limbs. The program’s physical therapist, Julie Colt, played an important role in Katelynn’s early development. She helped the family teach her how to roll over, crawl and eventually walk. She taught her how to sit up and pull her socks off.
Julie explained to them that her brain was telling her to do tasks which her body was not yet able to do which cause a great deal of frustration. So Nicole and Boyd had to literally get down on the floor with her and step by step practice pulling off socks, practice crawling and showing her repeatedly how to sit up and roll over.
“But it was delayed gratification,” said Nicole, beaming with pride as she glanced over to her precious blond-haired baby, still playing with her babies near the tree.
She learned to do all these things and the best news for dad was it was okay to rough house and play with her, like every other two-year-old. He could give her knee rides and turn her upside down, all things they worried they never could do because she was so fragile.
Lois Boomer, occupational therapist with the early intervention program, came in and taught the parents tongue and facial exercises, just so they could teach her to eat. “We had to do these exercises before every meal,” explained Nicole, who said that with the cerebral palsy the baby had no rotary tongue movement and had to build the muscles in her mouth and tongue.

Besides the brain surgeries little Katelynn has had surgery on her eyes, ears, stomach and bladder.
“It’s interesting that her body can’t always do what her mind is telling her to do,” said Nicole, who explained that many of Katelynn’s conditions have been extremely rare. “I don’t know how many times the doctors said this is a one-in-a-million chance that this could happen.”
Watching the precious little blond three-year-old fuss with her babies it is hard to believe that she has several medical conditions. She is now walking, talking and loves to show off her pretty bracelets that her aunt Melissa made with her.
The Huntingtons learned a few basic lessons is keeping their daughter alive and growing. First it was survival. “We had to keep her alive and this took a lot of participation on our part,” she explained. Next was the therapy and development stuff, like teaching her how to crawl, walk and feed herself. “These were daily and hourly routines and we had to do them over and over again,”
And now, “we are fine tuning our little girl.” We are trying to build on the skills she has learned and make life a little easier for her.”
Katelynn attends Castle Valley Center two days a week and Rural Utah Child Development two days a week. Castle Valley provides some important basics, such as physical and occupational therapy and a lot of extra attention.
At Rural Utah Development she is the only child with special needs and the other children are great at making sure she “carries her own weight.” They make her clean up her plate and put away her crayons.
She is succeeding with other kids her own age. “She loves playing with the kids, and having snacks,” little Katelynn said. Her favorite book is Green Eggs and Ham and The Cat in the Hat. “We read them to her many times a day.”
Toys have been a big part of Katelynn’s development. Many are adaptive toys such as puzzles with bigger handles and special spoons with larger handles. Some of the toys were provided by early intervention, but with their declining budget the Huntingtons had to go out and purchase toys that were necessary for their daughter’s development.
Even though a lot of these were regular toys they help with flexibility, hand motion, standing and building muscles. “We look at the toys differently,” explained Nicole. The blocks serve as tools to teach color, shapes and counting skills, as well as muscle building (pushing and pulling apart).
Nicole has spent a lot of time digging into programs to help other families who have children with disabilities. There are often resources available and there are always things that parents can do to help out their children with significant disabilities.
“We have always seen the light at the end of the tunnel,” explained Nicole, “But my tunnel is pretty long and the light is still very bright.” Boyd and Nicole sat together and smiled as they talked about the years ahead. “We do our best and strive to help her meet her potential.”
“We were told that she would need a wheelchair, and then later walk with a walker, and look at her prancing around the living room pushing her babies,” explained Nicole.
“I was told early on that if we quit so would she, so we have never quit and we have a beautiful little girl that is enjoying her first real Christmas as a toddler,” Nicole summarized.