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Child with T1D Commits Whole Family to Care

The first months of new T1D care are scary, all-consuming and completely change family dynamics

Tommy and Melodie Sevilla share the story of their T1D daughter Gracie’s diagnosis, treatment, and achievement.

“Gracie’s leg hurt again.  It happened often. What could a little girl be doing to hurt her leg?  Then she was thirsty and listless. Finally, we looked up her symptoms on the web and took her to the pediatrician.  We felt so guilty when we confirmed that she had T1D. She had been suffering, and we didn’t understand.

Diagnosed with T1D in March 2018, Gracie was four-years-old, weighed 42 pounds, wore size 4 clothes and looked exhausted. Today, Gracie weighs 55 pounds, wears size 7, clothes, and stars in the Riverside/Corona Under Armour flag football league.

MelodieThose first days, I was scared.  I was in mourning for my child who was still alive, but I knew she would no longer have a normal life.  I feared that everything for her would be different and harder.

Learning how to care for her consumed us.  How to count carbs, measure her blood glucose, and give her injections.  It was like having a baby again. We were up at night checking frequently, living in fear, never quite sure we knew what to do.

TommyI didn’t know there were two types of diabetes.  I didn’t know about Type 1 Diabetes. I had only heard of Type 2 Diabetes.  I learned as much as I could as quickly as I could. I was ashamed to learn how little I knew and shocked at how many families were raising children with Type 1 Diabetes.

It took months to gain confidence in our ability to care for Gracie. Getting rid of soda was easy.  It was much harder to learn when to use fast acting versus slow acting insulin, or to judge the impact on her blood glucose of protein and exercise.

Normalcy is hard to come by.  Our marriage changed. Little things no longer mattered.  Dealing with the big thing required teamwork and support. Gracie’s T1D became a full-time job for the whole family.

TommyWe got a Dexcom G6 CGM for Gracie after five months.  It has been a tremendous help. Both Melodie and I have the Dexcom app on our phones.  I have the alarms set at 100 and 260 because I want some warning when I am coaching Gracie on her football team.  Melodie has her alarms set at 80 and 275.

We don’t plan to get a pump.  Kids can be cruel, and we don’t want Gracie to stand out too much from her friends.  She wears her Dexcom on her leg, so it is under her shorts. We plan to get an alert dog next.

MelodieGracie started Kindergarten this fall.  Picking a school for her was surprisingly hard.  Some schools did not comprehend the care a T1D child requires.  The school we chose had one staff member and the spouse of a staff member each with T1D. They have been amazing; caring and loving Gracie as their own.

I am careful about the carbs in Gracie’s school snacks — 3-5 carbs in her morning snack and 12-15 carbs in her afternoon snack at 1 PM.  Her snacks are only slow carbs such as jerky and nuts.

I prepare her school lunch, but I give her a lot of choice in what to eat because she gets Novolog with lunch.   I want her food to be normal kid-food, so she fits in with her friends.

TommyOn weekend game days, we also give her a 12-15 carb snack at 1 PM, so she is ready to play at 5 PM.  It is hot in Southern California, so she burns glucose quickly. If she gets low, we use Gatorade Chews or something similar. Gracie was the only girl and the youngest player in our Under Armour Flag Football League this Fall.  She was also the only child with T1D.

Now that Gracie is healthy again, she also excels at soccer, baseball and basketball, roller skating and singing Christian Worship Music. Phil Wickham is her favorite artist and “Amazing Grace” her favorite song by him; a song that causes me to cry every time I hear it.

MelodieI feel guilty about the impact Gracie’s T1D care has had on her brother and sister.  Too often, their lives and desires have taken a back seat due to Gracie having a hard night or something else.  Both are super serious about Gracie’s care. I think our whole family has become more serious as we each cope and help and work together.

I want our pediatrician, and all others across the country, to have a poster in her office about T1D symptoms.  No one should be as clueless as we were.

TommyGracie has a website in development that is called “Grace for the Cure” and her URL is: http://GracieT1dSuperStar.org. We are determined to raise awareness about T1D; particularly identifying the symptoms to prevent death and promote early diagnosis, and to share our experiences as persons living alongside T1D.”

Life challenges each of us to be brave in different ways. Tommy, Melodie, and their children are courageous people. They show us how best to respond to the challenge that life presented them.

 

Martin is the Founder of SelfRx Media and editor-in-chief of Insulin Nation. He's a passionate about sharing knowledge with those affected by Diabetes.

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