Cystic Fibrosis

(Posted January 15th 2018 @ 1:35 PM by: Melody Reever)

When Your Child's Disease Is Invisible

My daughter, Reagan, is eleven years old. She came into our family after many years of waiting and praying for a child. When she was born, she looked like the picture of health, but it was quickly evident that something was not right. What we didn’t know at the time, but would discover several weeks later, was that Reagan had cystic fibrosis. Cystic fibrosis, or CF, is a life-threatening genetic disorder for which there is no cure. CF isn’t contagious, and it doesn’t affect cognitive ability. To look at my child you would never know that every day she is fighting to breathe and live.

Reagan had surgery when she was six days old and was in the NICU for several weeks. Everyone tells you that when you have a baby, your life changes. When she came home, our family realized that our lives truly had changed. It wasn’t just a crying infant, mounds of laundry, and sleepless nights. We also had to fit in daily therapy, medication, and extra doctor visits.

While CF doesn’t cause Reagan’s immune system to be lower than other children’s, she is more susceptible to certain infections. This can cause major setbacks in her health that can lead to increased treatments, medications, and hospitalizations. It is difficult for us when Reagan is in a setting with lots of children because, as we all know, children don’t always follow the best hygiene practices. Someone coughing into their hand and then touching Reagan can be dangerous. Someone sneezing on her or wiping their nose and then touching a toy or pencil that she might use can affect her health.

Every year before Reagan starts school, we have the chance to meet with the school nurse, guidance counselor, the principal, and her teacher where we share information with them. We are also able to develop a specific 504 plan for Reagan so that everyone is on the same page and so I know that the school is doing all that they can to keep her healthy.

The school has sick policies in place so that children who are displaying sick symptoms are sent home, which limits Reagan’s exposure. Church is a different story. As someone who started teaching Sunday school in my teens, I know that many times parents bring their children to church even when they are sick. While I admire people for not wanting to miss church, as the parent of a child with CF, sending my child to Sunday school actually causes me some anxiety from time to time. Cold and flu season are especially hard for us. There are times when we have to keep Reagan home from certain activities simply because of the risk of her getting sick. It isn’t that we don’t want her to be involved; it’s just that sometimes we can’t. Being places early in the morning is harder for us because we have to allow at least an extra hour to get her feeding tube disconnected, do her airway clearance therapy, and take all of her meds. Skipping breakfast is not an option since Reagan is on a high-calorie, high-fat diet, and some of her medication has to be taken with this type of meal. Being out late at night is also difficult because we have to allow for over an hour each night for more therapy. Her feeding tube has to be hooked up in time to run for ten hours and we have to be sure it will be completed in time for the next morning’s wake up.

When we don’t come to events, it isn’t because we are antisocial or uninterested. Many times it is because we are trying to keep everything on schedule. There are also times when we may have to get home to get a dose of medication if we don’t have it with us. Reagan takes more than thirty pills a day, and while we always try to keep everything we need with us, we are human, and there are times when we leave without it and have to go back home.

Michelle LaVoi attends church at New Life St. Louis. She enjoys cooking and running. The LaVoi family has a passion for sharing the love of Jesus by hosting a weekly Bible study in their home and by helping to run a nonprofit organization that provides new clothes, shoes, and other necessities to kids in need in local schools. They try to live by the motto “Serve God—Serve Others.”

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