Tuesday, September 17, 2013

The beginning of a new chapter

On September 17th, 2013, Gavin got his first dose of Kalydeco.

To be honest, I thought I would have this grandiose emotional moment. But like most things, the moment passed in the blink of an eye and it wasn’t until our drive home that it truly hit me.

(in the study, the capsule is opened and the inner tablets are dissolved in applesauce)

Gavin is taking Kalydeco. Our miracle drug is here. In my house. Right now. The drug is in my possession, and there is no more wondering when, if or how. We are beyond lucky that he has started this medication before he has ever once cultured any bad bugs, and that he has never been hospitalized.

People ask, have you noticed any changes? Honestly, not really anything significant. And I hope it stays that way. Why? Because he is SO healthy. So to me, NO changes means he’s staying right where he needs to be. Sure, a slightly more “stable” digestive system is starting to show its face, and any other positive changes will be welcomed with open arms.  But to us, keeping him where he’s at is what we need. Healthy and happy is the goal. Anything extra is just an added benefit.

This visit included another quick check up from the doc, sweat test, and blood draw but wasn’t anything too strenuous.

Still trying to wrap my head around it all.

It may sound trite, but I wonder if there will forever be a “before Kalydeco and after Kalydeco,” state of mind in our home.