Technically we have been living "pandemic life" for 13 years and counting. In 2007 with a tiny new baby in our arms we met and listened to the first pulmonologist we had ever met. This pulmonologist explained what life would be like for our cystic fibrosis baby. He asked us about our habits as a family and then very honestly gave us his advice on how that will change in order to most protect our baby. In addition to the vital daily lung treatments we would give our daughter to keep her body in as healthy condition as possible he also gave us guidance on our time spent outside the home. He reco ..read more

Dear Newly Diagnosed family of a precious cystic fibrosis human, When my daughter was diagnosed with Cystic Fibrosis at 6 weeks old I felt buried under the ruble of what I thought her life would have been. "Fortunately the sun has a wonderfully glorious habit of rising every morning," and slowly but surely this initial cloud of misconception cleared (quote by JC George). We managed together as her support system (including family, friends, CF Clinic team, and fellow CF families) to climb each challenge of meds, routine treatments, and nutrition. Now I see my teenage daughter soaring through ..read more

Gut reflections, 4 years into g-tube life. Orson has had his g-tube for four years now. It is still strange, incredibly cool, and can be emotionally draining for him all at once. He loves having a trap door for liquid meds. He loves watching youtube (studio C, and kid snipets) videos while his morning bolus feed is accomplished. He typically does not like talking about his g-tube with people. Sometimes however he will randomly offer up the information depending on the social environment. He hates that it is always there. He hates the scared feeling he gets when someone on the playground ac ..read more