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The Wait For My Son’s Trikafta

By Misty Roussa March 26, 2020

I am both excited and scared that my son will be old enough to try Trikafta when he turns 12 later this year. In some ways, I can hardly wait to see how he will benefit. But I also know that he might experience side effects, and I don’t want him to have any setbacks.

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  1. Sharing My Story on Social Media Without Oversharing My Son’s CF Journey

    By Jaclyn Strube October 9, 2019

    Using social media helps me cope with raising a child with cystic fibrosis, but I have to remember that it’s not just my story I’m sharing. Here’s how I make sure I share the right parts of my son’s CF journey.

  2. How One Blood Draw Helped Us Grow as Parents

    By Jaclyn Strube April 22, 2019

    Our parenting style wasn’t something my husband and I figured out before our son was born. But given all the unexpected challenges CF throws at us, that flexibility has helped us grow as parents, able to change course if something doesn’t work.

  3. Food for Thought: Lessons From My Son’s Road to a G-Tube

    By Jaclyn Strube June 21, 2018

    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.

  4. How a G-Tube Unlocked My Son’s Potential

    By Jaclyn Strube March 22, 2018

    After deciding to get a gastrostomy tube for our son, my husband and I made sure he was prepared for the procedure. What we weren’t prepared for was the difference it made in his health, energy levels, and personality.

  5. How I Decided on a G-Tube for My Son

    By Jaclyn Strube January 23, 2018

    My husband and I tried everything to encourage weight gain in our young son to no avail; so we chose to get him a gastrostomy tube.

  6. 5 Ways to Keep Your Toddler Busy During Treatments

    By Jaclyn Strube November 10, 2017

    Having trouble finding things to keep your toddler occupied during treatments for cystic fibrosis? Here are five tips that do the trick for my 3-year-old son, Major.
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