Our dream for our daughter, Eden, is the same one that parents have for their kids who don't have cystic fibrosis. We want her to be happy and realize her true potential.
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As the parent of children with cystic fibrosis, it can be challenging to know where to turn when they experience unfamiliar health issues. Here are six things I've learned from working with our CF care team and our pediatrician to keep my kids healthy.
Having lived with cystic fibrosis for 47 years, I want to pay it forward and share the life lessons I've learned with new parents of children with CF.
Growing up with cystic fibrosis, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.
As children with cystic fibrosis transition toward greater independence at school and at home, they will also take greater responsibility in managing their disease.
Delayed puberty is common among young men with CF, but working with your CF care team to ensure you get good nutrition can help encourage healthy development and growth.
Your doctor may classify your baby as having CRMS/CFSPID if he or she has a positive newborn screen and subsequent sweat chloride test results that fall into an uncertain or borderline range described as "intermediate."
To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
If you show symptoms of cystic fibrosis or your baby has a positive newborn screen for CF, a sweat test at a CF Foundation-accredited care center can help provide a CF diagnosis by measuring the concentration of salt in your or your baby's sweat. The test is painless and is the most reliable way to diagnose CF.
At this age, your child with cystic fibrosis is ready to transition from breast milk or formula to whole milk or a high-calorie supplement. Encourage independent eating. Create a consistent schedule and mealtime expectations.