I’d like to share Caleb’s story and our journey with cystic fibrosis as a family. I had an emergency C-section (6 weeks early) due to Caleb’s lack of movement in utero and his increasing bowel distension seen on ultrasound. On day 3 of his life he had major (life saving) surgery at Hershey medical center due to a bowel blockage caused by CF.  Surgeons removed part of his intestines and created an ileostomy to let his body heal for a couple months.

He spent 6 weeks in the Hershey NICU where we learned, around 2 weeks old, that he did in fact have cystic fibrosis from the newborn screening results. Caleb had surgery to place a port in his chest while in the NICU. We learned to care for his ostomy bag and port so he could go home on IV nutrition for his main source of nourishment.

He had another major surgery, reversal of his ileostomy, at 2 months old in which they closed his intestines back up. He was inpatient for one week at Hershey medical center until his digestive system functioned normally again.

At only 4 months old, he had another surgery in which a gastric feeding tube was placed for nutrition supplementation and his port was removed because the IV nutrition was affecting his liver negatively. Caleb has had at least 15 total surgeries and procedures under anesthesia to sustain him these past 9 years, most done in the first 3 years of his life.

As you may know, cystic fibrosis affects the lungs, pancreas, liver, and other organs. Caleb had a rough time with his digestive system early on. He went through feeding therapy for a couple years at a young age, constant GI issues, and difficulty gaining weight for the first few years of his life. He eats well now but still needs his feeding tube to supplement his diet and will continue to need it for the foreseeable future. For the first 6 years of his life, Caleb also dealt with yearly cf lung infections requiring multiple rounds of inhaled and oral antibiotics. As you all know, at age 6 he started on the miracle drug Trikafta, and has been free of cf lung infections, gaining weight better, and has less upper respiratory and ear infections. 

Caleb has been through incredibly hard medical stuff, but his strong spirit and personality can’t be kept down. This boy always has a smile on his face, a twinkle in his eye, and loves to be silly, kind, and helpful. He’s overcome many obstacles and is doing so well now. He has endless energy and it brings us so much joy to watch him run, ride bike, and play sports. He takes pleasure in the little things that we tend to take for granted. Caleb’s journey with CF has taught us to truly appreciate every day. It has been a hard unpredictable journey, but we wouldn’t trade it for the world. 

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Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.