Our son was diagnosed shortly after he was born due to a bowel obstruction caused by meconium ileus. DH and I didn't know we were F508del carriers, no family history. During his NICU stay, we met his CF doctor who stressed being proactive --- chest physiotherapy (CPT) a minimum of twice a day, more if he gets a cold. Importance of keeping the lungs healthy despite no symptoms. Maintaining a healthy weight due to correlation between a healthy BMI and lung function. We took it one day at a time. I went back to work after 12 weeks of maternity leave and we were fortunate to find an awesome daycare --- kept the babies separate from the germy toddlers, had regular outdoor activities. DS is in school, is in a few activities --- gymnastics and trapshooting, loves to swim. He's also in the school band and plays trombone.
We've had our ups and downs. We struggled with maintaining a 50th percentile in terms of weight. He was picky eater. He cultured pseudomonas before he turned 3 months, before he was anywhere besides home, so we started Tobi nebulized. He does his vest three times a day with nebs while playing video games. He really didn't get sick all that often, which was our fear, that he'd be the sickly CF kid. But in actuality, he rarely missed school because of illness -- vacation maybe.
Orkambi was a game changer when he turned twelve. He gained weight, grew taller. He starts high school next week and we recently switched him to Symdecko.
