Salty & Sweet

CF babies are known for being extra salty. The reason is that a faulty salt chloride channel causes people with CF to excrete too much salt. 

The diagnostic test for CF is called a “sweat test” because it measures the salt chloride levels in your sweat. 

When the boys were little we would often lick (yes, lick) the top of their heads, taste the salt, and remind them they were sweet. You see there has been so much about this diagnosis that has been both salty and sweet. Breathing treatments, chest physical therapy, clinic visits, enzymes, supplements, high-fat/high calorie diets make for a long day that can easily become overwhelming. A simple cough turns into a sudden scare because you worry about a possible lung infection causing damage to their lungs. Our visits to CF Clinic can cause anxiety as we drive to our typically two-three hour appointment in which we never know what can be found/said. However, there are many things that keep us going. The sweet things that give us the push we need to make it to the next day. We’ve had so many people share our story, create events to raise awareness and support our various fundraising efforts. When we finally make it into TCH we’re greeted by our care team – a team of 6+ people dedicated to keeping an eye on the boys and providing them (and us) with the very best of care. I know I’ve said it before and I will say it again, we are surrounded by the very best of people.

Generous, honest, loving people that make up this army that is marching behind our boys.

We often think about the “salty” moment when we have to explain CF to the boys and what it means. Then we remember that in the same moment we will get to tell them of the amazing people that have been with them on their journey. We will also get to share with them just how far the advancements have come! 

Read about the miracle drug, Trikafta here.

We’ve seen both the salty and sweet and we believe our Father is using the boys to salt the earth.

He is using these boys to enhance the flavor of all of our lives.

These boys have made our daily moments, the sweetest moments we’ve ever experienced and we’re so thankful for the gift they continue to be. For now, we go enjoy another day with our salty & sweet bubbas (& Maylie girl) and pray that your day is full of the very sweetest of moments as well.