You can best manage your health when you know what to expect, what resources you can use, and a community of people with whom you can share your experiences.
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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.
For so long, my identify was defined by beating the odds and achieving a successful career despite having CF. But recently, health complications have forced me to create a new identity focused on self-care. With the help of my support system, I am slowly adapting to this new chapter.
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.
With help and support from my parents, I felt empowered to make my first big decision with my cystic fibrosis care: When to remove my G-tube.
Caring for a child with CF can be a lot to juggle — from the many medications and daily treatments to the endless doctor's appointments. But I’ve found a system that helps me stay organized and stress-free so that I can focus on what really matters.