A Look Into My Son's CF Journey

Written by: Jaclyn Strube, Cystic Fibrosis Advocate & Mother

It’s a cushion. A safety net. A helper. It’s not a hall pass to stop working hard. So what is “it?” It is a g-tube, feeding tube, or superhero port in my home. My son Major received his superhero port 2 years ago after battling slow weight gain for the 12 months prior. With his love of superheroes, putting superhero juice into his superhero port seemed like the perfect way to get him on board with the change. Major has loved his little helper from day one, but knows that he has to put in the work orally, too.

Major was diagnosed with cystic fibrosis when he was 7 days old. Cystic fibrosis (CF) is a life-threatening genetic disease. It impacts the lungs and entire digestive system. We all have mucus in our bodies, but in a person with CF it is thick like molasses. This makes a great environment for bacteria to get trapped in the lungs, causing infection. It also surrounds the pancreas, making absorption of nutrients very difficult – particularly fat. To properly benefit from what he eats, Major takes pancreatic enzyme replacements and consumes a high fat, high calorie diet. But, even that wasn’t enough to put meat on Major’s bones and we finally opted to get a feeding tube for him. Through the feeding tube, he gets about 500 calories overnight, but continues to eat orally all day.

With each of Major’s meals, our goal is to pack as much fat and calories in every bite. Luckily, his favorite food is avocado! He also loves anything cooked in olive oil, butter, and cheese. Don’t worry, he gets plenty of fruit and veggies in his belly too! Another way we pack calories in is to provide hearty drinks and snacks. It’s very rare that he only has a glass of water with a meal! Major is very active with school and sports, so he’s burning a lot of calories as well. Which is great! But means we have to work even harder.

Snacks and drinks at meal time is where Healthy Height comes in. Major is always on the go, and a drink snack allows him to keep moving! I love that Healthy Height not only allows Major to stay moving, but it packs a calorie punch. The powder alone has a great nutrition profile, which means a lot to us for Major’s dietary needs. Even so, we don’t stop there. I like to bulk his shakes with a bunch of things! To name a few: fruit, peanut butter, full fat yogurt, chocolate syrup, avocado, and I plan to try cream cheese next. Major has taken to helping me whip them up, which I absolutely love.

While we are so thankful for the ability to feed Major extra calories overnight via his superhero port, we’re also thankful for his ability to eat food orally. Every meal is carefully considered to make sure he is gaining as well as he’s able. It helps to have something like Healthy Height in our tool chest to ensure he’s getting calories and good nutrition.

Ashley
About Jaclyn Strube

Cystic Fibrosis Advocate & Mother

Jaclyn is a mother to her son, Major, who was born with cystic fibrosis. A graduate of the University of South Dakota, she now works in the financial services industry. Jaclyn is a national and state advocate for the Cystic Fibrosis Foundation, a member of the CF Parent Advisory Council at Blank Children's Hospital, and an active fundraiser for Great Strides. She also serves as the Foundation's national advocacy co-chair. Jaclyn lives in Des Moines, Iowa, with Major, her husband, Drew, and their dogs, Eason and Lennon. Follow her on Instagram, @fit_cf_momma.

 

Nutrition to Help Kids Grow - and Sleep!

Every year our team of Pediatricians at Schneider Children's Medical Center have 20,000 visits from children with issues relating to growth. Our doctors wanted to find a non-invasive way to help children grow and the nutrition in our shake mix is the result of their efforts. The nutrition in our shake mix was shown in a clinical study to promote growth in 6 months, as well as improve sleep patterns in kids who take at least 1 serving per day.

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