Today was CF clinic day and everything was pretty routine. Girls are doing great at the moment. Lung function was at baseline and they both gained weight! As always, we await culture results to find out if any thing is brewing in their lungs. With CF, you just never know when you might be surprised and when the course of things will shift. But we are thankful for where they are today. The girls enjoyed socializing with their care team, and getting spoiled with prizes from their sweet nurse Mrs. Sherry! 😊 As usual, Kelsie especially had lots to say and many stories to share!
They both got labs (with the “magic” cream beforehand to numb the site) and even Mackenzie handled it very well. She was a little more apprehensive today anticipating the “throat”(culture) and labs but it sure helps when big sister goes first for the scary stuff. Today, as I sat there admiring Kelsie, so confident and comfortable with the routine there, reciting her med list, so mature and nurturing to her little sis, I kept getting flashbacks to our first visit in this clinic right after she was diagnosed with CF. We even passed by the room where I held down my tiny newborn for the sweat test that confirmed what we already knew. It’s amazing how far we have come. But, sometimes, I look at both of them, feel the weight of their diagnoses all over again and somehow still can’t believe it. We’ve been on this journey for almost 9 years now and it all feels so normal now but it still hits like a ton of bricks sometimes. They are doing so well and we have SO much to be thankful for but the treatment burden is still heavy. And the invisible weight I carry is usually hidden behind a smile. But oh how I long for the day when CF doesn’t exist anymore. Praying it happens in their lifetime! #takeitaway #curecf