In the Beginning……

Caleb was born June 27, 1998, he was very sick through his first 6 years. He was repeatedly misdiagnosed with asthma, bronchitis and ear infections. In first grade he was hospitalized for “bronchitis”.

Shortly after that we switched doctors and upon his first exam with the new doctor his enlarged spleen was discovered. He was sent immediately for an ultrasound where his enlarged spleen was confirmed and liver disease was also found .

The doctor decided that given his history of lung infections and the newly found liver disease he had reason to order a sweat test to rule out cystic fibrosis (CF). At the time the doctor did not believe that he had CF and even said “I’m going to run the test, but I don’t think he has it because most children with CF have failure-to-thrive within two months.”

To our horror the test was positive and our lives changed forever. I cannot tell you the emotional roller coaster you go through as a parent when you find out your beloved child has a life threatening medical condition with no cure. We were sent to the local CF clinic in Bangor to have an official diagnosis and begin treatments.

The treatments helped significantly and although this was a terrible time for us emotionally, it was also relieving to see my child gain strength and the ability to breathe again. He was healthier than he had been in years because of the medications and treatments to help manage the symptoms of the disease.

For the next year Caleb was in surgery every two weeks to have esophageal vericies banded to reduce the risk of internal bleeding from something as small as eating a Dorito wrong. The vericies were caused from a back up of blood into his esophagus caused from his scarred liver.

At one point he had some bleeding and was life-flighted to Portland, where his Pediatric Gastroenterologist is, for an emergency endoscopy and banding. Caleb has since spent countless hours with numerous doctors, we have made it through every step with a wonderful team of doctors and specialists by our sides who have helped to get him to this point.

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