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  • Community Member Feature: Brenda and Bristol

    Posted by jenny-livingston on September 14, 2020 at 9:45 pm
    Brenda, mother to Bristol (who just turned 4 and had the most amazing birthday party — check it out on IG) shares a bit about her approach to treatment time:
    “Twice a day, every day,” the doctors told me, “but, if she gets sick, you should increase this to four times a day.”
    Whoa. My head was spinning. How do you manage all the things you have to do with a newborn and throw in 20-30 minutes of airway clearance? How am I ever going to get everything done in a day? To say I was overwhelmed with the amount of work it took dealing with a newborn with a chronic illness is an understatement. As much as I was in my own head, I often tried to put myself in my daughter’s shoes. That is when I made it my mission to make treatment time fun.
    So what does this look like? As a newborn, it was songs and dancing while she kicked and laughed. As she became mobile, sometimes CPT was done in a ball pit or chasing her down the hallway. When The Vest got introduced we had special toys she only got to play with while she was doing vest. Sticker books, puzzles, and play-doh were top activity picks. When she has extra energy to get out we roll her cart over and she bounces on her trampoline while doing her Vest. We call this Double Airway Clearance. Currently, learning activity books and Barbie dolls are her favorite ways to play while she clears out those precious lungs. Now, at almost 4 years old, my daughter looks forward to treatments because of all the fun things we do during them.
    I felt strongly that positive experiences surrounding treatment time would be a building block for compliance as she grew and became more independent. I never wanted treatment time to feel like an inconvenience or a burden. As much as it can be a daunting task, it is a beautiful opportunity to take advantage of the advancements in modern medicine and it’s built in together time. In a world where things are constantly in motion, this allows us to sit down and be present with one another.
    Life looks different than we ever imagined when you have a child with Cystic Fibrosis, but that doesn’t mean it has to be any less wonderful.
    Follow Bristol’s journey on Instagram @bristolspistols
    Thank you, Brenda, for sharing this!
    jenny-livingston replied 3 years, 7 months ago 0 Member · 0 Replies
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