Category: Family Life

We’re so proud of our little Addy.  Her first Clinic went really well.  She was poked and prodded for a good 3+ hours but took it like a champ.  The team at Children’s were just stellar.  All the doctors we saw were extremly helpful, willing to listen, and answer any questions we had.  Oh, and we’re happy to report that Adalyn achieved her goal of being in the 50th percentile for BMI earning her a “Green Light.”  Little Addy is already proving to be an overachiever…ahem… like her mother.  🙂  Now, it’s up to us to keep her within that range and ensure her light stays green for as long as we can.  I asked Adalyn after we heard the good news if there was anything she wanted to tell Cystic Fibrosis and she said:

We’re all pretty excited about Adalyn’s first Clinic tomorrow.  It’s basically a Doctor Palooza where Addy will be examined by about 7-9 different specialist (Pulmonologist, Gastroenterologist, Nutritionist, Pharmacist, Physical Therapist, etc.) all of which will be recording her health and giving us critical advice on how we should proceed with treating our little girl.  It should be quite an adventure.  I don’t know if we’ve had Adalyn out of the house for that long before!  But, we’re in good hands and we’ll leave with more information and understanding of our little lady’s health.  Oh, and I just want to leave a special shout out to our mentors Allan and Tabitha.  Thanks for taking the time to talk to us and give us guidance on our…adventure.  You guys are great!  🙂

So I’m in the “office” at home, trying to get some reading done, when I see the adorable face below staring at me.  How can I get ANY reading done with such a sweet stare like that?!  She just melts my  heart.  Focus, Ted, focus.  So what exactly could steal my attention, even for a second, away from my little girl?  Well, I was just reading about the new drug Kalydeco (kuh-LYE-deh-koh) that was recently approved by the FDA which directly targets the cause of the underlying illness in patients with Cystic Fibrosis.  This drug has been working miracles since it’s release.  It’s taken in pill form and dramatically improves lung function, lowers sweat chloride levels and helps patients gain weight.  It truly teeters on the brink of being called a cure.  I can’t stress enough how wonderful this drug is.  It only comes with one caveat.  Right now, it only treats Cystic Fibrosis patients with the G551D mutation.  This particular mutation is roughly 4% of the CF patient population.  The vast majority of CF sufferers (~90%), including Addy, have a different mutation, the Delta F508.  As you can imagine finding a drug that works as well as Kalydeco in patients with the Delta F508 mutation is a TOP priority.  The research and development of this drug has opened up the doors that will ultimately lead to a cure for the rest of the CF population.  Phase two trials are already under way where Kalydeco in combination with another potential therapy, VX-809, is seeing positive results in people with the Delta F508 mutation.  Take a quick peek at the video below Addy’s pic.  It’s short, about 6 minutes, and will give you a little more insight to what I’m talking about. Oh, and it won YouTube’s “best video” in the DoGooder YouTube Nonprofit Video Awards for the Large Nonprofit category!  Kayla and I are participating in the Great Strides walk at the 2012 Atlanta – Georgia Tech IC Lawn on 05/19/2012 click here if you want to support Adalyn by donating or signing up to walk with us.  I’ll post more details soon.