2021 Great Strides
When you have a child diagnosed with cystic fibrosis, you gain a whole new vocabulary.
First, we learned pancreatic insufficiency. The duct that allows enzymes to empty into the intestines gets blocked with sticky mucus. Without those enzymes, Eli can’t absorb fat or protein. Luckly, oral enzymes have been available since the 40s. Eli takes 12 pills everyday to absorb the nutrients his body needs to grow.
Next, chest percussion therapy or CPT. The use of percussion (clapping on the chest and/or back) to loosen the thick, sticky mucus in the lungs so it can be removed by coughing. Unclogging the airways is key to keeping lungs healthy. We spent the first year of Eli’s life clapping on his chest. His first birthday brought his first vest that connects to an air compressor to provide the percussion. Eli does 2 to 4 treatments everyday for 30 minutes per treatment.
This year the new vocabulary word is Bronchiectasis. It is a condition where the large airways of your lungs are permanently damaged, widened, and thickened. These damaged air passages allow bacteria and mucus to build up and pool in your lungs. Despite the fact that we never skip an appointment, never skip a treatment, cystic fibrosis is still causing damage to Eli’s lungs.
Because of this we will march again this year. We will keep raising awareness, sharing our story and raising money till CF stands for CURE FOUND!