Slide 11
Slide 11 text
Shane was born in the summer of 2016 the first birth facility in a pediatric hospital specifically designed for mothers carrying babies with
known medical problems requiring immediate treatment.
Because CF is an “invisible” illness, Shane appeared healthy at first. But a sweat test shortly after he was born confirmed the prenatal tests that
he had cystic fibrosis. Jessica and Greg began to focus on the future.Once he was born something changed for us,” Jessica says. “I think it was
because we were confident in the care he was getting. Dr. Allen told us to focus on the things that are within our control. Don’t go looking for a
cure, but focus on taking care of Shane, doing his chest physical therapy, giving him his enzymes, loving him, and treating him the same as we
did our daughters when they were infants. It was phenomenal advice that we remind ourselves of on a regular basis.They were also reminded
of the significant advancements taking place in the treatment of CF, which added to their confidence in Shane’s medical team.
Jessica and Greg learned how to perform Shane’s CF chest physical therapy at home 45-minute sessions per day that focus on manually
clearing the mucus in his lungs. As time went on, the couple found ways to adapt the sessions to make them more effective and easier. For
example, they substitute their own cupped hands instead of percussor cups when doing his chest PT. They also put on his favorite shows
(these days it’s the Wiggles, Topsy and Tim and Mickey Mouse Clubhouse) and, most days, he doesn’t put up a fight.
They also learned early on that Shane’s pancreas does not produce enough enzymes to help his body digest fats, proteins and carbohydrates.
Each night, Jessica breaks open each of the 15 to 18 capsules Shane will require for the next day’s feedings and distributes the tiny beads into
pill cups. This saves time and allows Shane’s 10-year-old and 8-year-old sisters to help with the preparations adding the enzyme beads to his
food.
As for Shane, he is a happy toddler. “He is walking and talking and getting himself into a lot of mischief,” Jessica says. “He’s a little teaser, he
likes to make people laugh … and he always has a smile on his face. We are truly blessed to have him as our son.”
Cystic Fibrosis