I've written about how tough a decision it was to get my son, Major, a gastrostomy tube. I also wrote about the benefits it has provided. Here's what the process taught me.
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Although your teenage years can be difficult, they ultimately help mold you into the person you are meant to be -- especially when you have a chronic disease, like cystic fibrosis.
After my lung transplant, I discovered I couldn't keep eating the typical high-calorie CF diet. By learning to practice mindful eating, I have found a new way to enjoy my food.
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.
When I first got an enteral feeding tube as a teenager, I had no idea how many doors it would open for both my health and my involvement with the cystic fibrosis community. Fifteen years later, here's how I'm doing today.
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.
Kids can be picky eaters. When you have a child with CF and the nutritional stakes are higher, you may need some creativity to keep them interested.
Managing your blood sugar if you have cystic fibrosis-related diabetes is difficult, but the glycemic index can help.
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.