Through Faith and Trust, KATHERINE JONES found her new normal

Through Faith and Trust, KATHERINE JONES found her new normal

by Lisa Layton

Imagine being a parent of a seven and a half month old baby who, until now, had been a normal, happy, healthy baby. We would all count our blessings for that, but now imagine everything changed in what seemed like an instant. Your baby becomes fussy and eating habits change, as most do when babies are possibly coming down with something. Eventually these symptoms turn into soaked diapers, labored breathing, low grade fever, throwing up and weight loss. As a parent, you would know something was terribly wrong, but as the parent of an infant, type 1 diabetes would not likely cross your mind as something you were facing.

This was the story for Katherine Jones’ parents. At seven and a half months old, Katherine became the youngest baby in Huntsville to ever be diagnosed with type 1 diabetes. Seventeen years later and starting her senior year of high school, Katherine is a beautiful, energetic and active young lady full of life and spirit and has been living with type 1 diabetes since before she can remember. She knows no way of life other than one of hospitalizations, needles, blood checks, constant monitoring and at times excruciating headaches that affect her ability to carry on normal activities of other of girls her age.

According to the Mayo Clinic, many of the approximately 15,000 children a year who are diagnosed with type 1 diabetes, show classic symptoms of extreme thirst and hunger, frequent urination, behavioral changes, weight loss and fatigue, to name a few. Infants experience these symptoms, but obviously, with their limited communication, oftentimes the severity of their symptoms may go unnoticed or just present as a virus that needs to “run its course”. It becomes a guessing game for parents and doctors alike until the proper urinalysis and blood tests are performed. Once these labs are completed, a definitive diagnosis can be made within an hour and at that time, urgent treatment becomes vital.

When Katherine was diagnosed, she spent 3 nights in the Pediatric Intensive Care Unit and 2 nights on the Pediatric Floor, both at Huntsville Hospital. When the time came for her to be released from the hospital, her mom Kristy was nervous about taking her home.

“I remember taking her home and I was scared to death literally to walk in the door; worse than having a newborn for the first time. I really have to keep her alive now and I don’t know what I am doing, “ Kristy said.

She described the first night home as feeling like she was being thrown into the deep end of a pool with no life preserver or swim lessons. They were not just counting carbs, they were “chasing numbers” trying to provide her nutrition and keep her blood sugar at a safe level. They did all this while trying to maintain a normal environment for their three year old toddler son as well. Less than 1% of all children diagnosed with type 1 diabetes are diagnosed in the first year of life, and if current trends continue, the incidence of type 1 diabetes in the pediatric population will have increased by 23% by the year 2050 as stated by the CDC.

Soon after beginning their “new normal” as parents of an infant with diabetes, Raymond, Katherine’s dad, walked in with bags of medicine from Medical Arts Pharmacy. Kristy said she had no idea what to do with all of the medicine, even though the family spent an extra day in the hospital just learning about Katherine’s care, which involved mixing two different kinds of insulin. Raymond and Kristy practiced giving each other saline shots so they would be ready when the time came to administer the real insulin to their baby multiple times a day.

After several months, however, they realized they needed to make a change and inquired about a more suitable medical regimen for Katherine. At fifteen months, Katherine became the youngest baby in the state of Alabama to be placed on an insulin pump. An insulin pump is a small device about the size of a cell phone that administers “rapid acting” insulin. It has an internal computer that is controlled by a screen with buttons. This device pushes insulin into your body through a thin plastic tube. Kristy said she had little velcro pockets to attach the device to Katherine’s onesies. The new method of treatment lessened the need for multiple shots a day. Kristy said it was a more convenient and accurate way to maintain Katherine’s blood sugar at a healthy level. Additionally, it was a better way to manage her diabetes as she grew, completed pre-school and started kindergarten. As many parents were sending their children to kindergarten for the first day, waving goodbye, Kristy found herself spending hours with the school nurse reviewing details about how to safely care for her daughter. Sending Katherine to school full time was as much about fear and trust as it was about the nostalgia of sending her to school for the first time.

Katherine said she started caring for herself around six or seven years old. It was then that she temporarily discontinued use of the pump and went back to her routine of insulin shots. After some time, she began using what is known as the Omnipod System. It is a small lightweight tubeless pump that is wireless and is controlled by a “bluetooth like” device that tests her blood sugar and communicates with a pod which contains approximately three days worth of insulin. The pod is attached to either an arm, a leg or the abdomen. Once the hand held device interacts wirelessly with the pod, a proper amount of insulin is released in the body. This system is what Katherine uses today and it allows her to swim, shower, and carry out her daily activities with minimal inconvenience.

Despite the added advantage this new technology has provided Katherine, the hope for a cure is still something that weighs heavily on her. While there is still no cure in sight, Katherine has participated in HudsonAlpha’s DNA mapping in order to better understand the mutation that results in early onset diabetes. The mapping also studies the correlation between headaches and diabetes that at times rob her of some quality of life. She does this in hopes to one day get some answers that will be useful in finding a cure. In the meantime, as her mom says, “she’s still got to get up everyday and live every moment doing what she has to do to stay alive.”

Katherine is now starting to plan the next major step in life as she looks at colleges. This is an exciting time, however Kristy still has a hard time thinking about it.

“Being a good parent requires knowing when to push and when to back off, when to help and when to let them make mistakes and then being strong enough to watch them go”. This is something the Jones family will face when sending Katherine to college. Her life has been a preparation for the day when she is totally self-sufficient and her work with HudsonAlpha hopefully will help make the transition to total independence an easier one.

Being a normal teenager requires much more of Katherine than many of her peers. Good health is often taken for granted, but she can never take it for granted. She is very thankful for her good days and battles through the not so good days. Sometimes when a child is diagnosed with a medical problem, especially one that has no cure, a portion of their innocence is taken. To get through life requires a huge amount of trust and faith to walk a path one would never choose. Kristy says out of their family, if anyone could handle something like this, Katherine is the one with the strength to do it. The Jones’ do not understand why God chose them to carry this, but their faith assures them that one day they will know and understand the answer, and by that time, it’s fairly certain Katherine will have found a way to make a difference in someone’s life. Little does she know, she already has.

A Diabetes story