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A Day in the Life of a Child with a Chronic Health Condition

When a child is diagnosed with a chronic health condition, it changes a family’s life, and their routine, in an instant. Isabelle Warrington’s family knows that all too well, as her diagnosis changed her family’s life. Her life and routine look different than other children’s, including her siblings. “I just want people to see that life with a chronically ill child is so not normal!  She may look normal to the outside world, but the things she goes through and our family battles are so not normal,” Jamie Warrington, her mom, said. Here’s what a typical day looks like for Izzy.

Before School:
Izzy wakes up. Her parents take her weight, find her something to eat and give her Lasix, which is a diuretic that makes her pee about five times before they leave the house. Her mom helps her get a water bottle filled; pack a lunch and snack; and take rest of her meds, which include Epaned, fish oil and Advair. Her stomach pains will hit shortly after starting to eat, and she will need to rest for a bit. Her stomach pains will hit again about 15 minutes later. Her younger siblings get to sleep about 20 to 30 minutes longer each morning.
During School:
During the day, Izzy has to try to remember to drink one full bottle of water before lunch. She grits through a couple of small stomach pains during her classes. At recess, she is worn out, so instead of going out with her classmates, she will rest in the nurse's office where she will have her temperature taken.

At lunch, her stomach pains start when she starts eating, causing her to eat slowly and take breaks as needed. Her diet is low sodium, low cholesterol and high protein. When her class is finished, they will be dismissed for recess while she stays behind and tries to finish her meal.

During the afternoon at school, she has to remember to drink another bottle of water. She has a few pains, but pushes through. At her after-school program, she checks the nutrition label on the snack they offer. If it’s not in her limits, she will eat her own snack she brought. At 5:30, her parents pick her up and head home.

After School:
At supper, she takes more medicine, including Lasix, Epaned, fish oil, Pravastatin, Advair and vitamin D. Her parents have to look ahead at the week and decide if there is an evening the family will be eating a higher sodium meal or eating at a restaurant. If so, they make sure lunch that day is very low sodium.

At 8:00 p.m., she gets ready for bed and tries to get enough sleep to start the day over again. She will get up a couple of times during the night to use the restroom.

That is just a typical day in Izzy’s life and doesn’t account for complications or a change in routine.



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