If Neil had been born in the 1960’s, he would have probably lived only five years – that was then the average lifespan of CF patients. So instead of getting ready to celebrate his fifth birthday this Sunday at home with a party, we quite possibly would have been celebrating in a hospital, or trying desperately to brace ourselves for living without him.
Not that these thoughts ever completely leave your mind. Today, though, he’s doing well. His last CF Clinic visit at the A. I. DuPont Hospital for Children revealed that while he’s still struggling to gain weight (he’s nearly five, and weighs a little less than 30 pounds), his lungs are clear, and a throat swab detected no sign of bacteria in his lungs.
The inability to gain weight is a pretty typical struggle for CF patients. Following consultation with his nutrionist, we’ve been adding melted butter, cream cheese, and/or Carnation Instant Breakfast to his food in order to ramp up the calorie count. As Neil gets older, we’ll work hard to ensure that he gets the more than 3,000 calories he’ll need each day to help maintain his health.
The cruel irony is that Neil also suffers from gastro-intestinal reflux disease (GERD) and has only recently developed sufficient muscle tone in his mouth to enable him to tolerate even slightly chewy foods. So it’s been baby and toddler food for him from the time he was two months old. We joke about how tired he must be of applesauce.
But like so many families who deal with CF, we’re thrilled when we read that median age for kids born today with CF has increased from 32 years in 2000, to 36.5 years in 2005. Forty percent of CF patients these days are 40 or older. All great news, courtesy of the Cystic Fibrosis Foundation.
But that still means that we will outlive him – a fact that we file in our short-term memory and only deal with from time to time when we’re feeling strong enough.
Next: I’ll take you through a typical day for Neil – his many medicines and treatments, but also his curious love of ceiling fans, swinging doors, and the song “Bingo.”
