Support is everything

My first task as a new PCD mom, was to have 25 shirts sold and printed, to raise awareness, and I was successful.  I can't thank everyone who bought shirts enough.  But my next task is to make sure they are worn, in various parts of the US, to bring awareness everywhere!
I read an interesting fact the other day, which has been rather unsettling to me.  Of all the therapies and treatments used on people who suffer from PCD, not of have been tested on PCD patients.  Most therapies are modeled after patients of Cystic Fibrosis.  This is my fuel for bringing awareness to PCD and raising funds so that research can continue, on PCD patients. 
As Rylee battles yet another sinus infection and some coughing that is causing wheezing, my main goal is to keep her lungs clear.  It is a sad thought to think every time I hear the doctor say her lungs have mucus buildup, that I worry it is slowly causing permanent, irreversible damage.  That's why doing the nebulizer treatments and vest therapy are so important.  And while I still feel a bit guilty having her sit hooked to some machine for at least and hour a day, all the new Christmas toys certainly have helped.  The more I have her hooked to a machine at home, the less likely we'll have to spend another few days in the hospital--so our $16,024.00 Vest Therapy is serving its purpose!
So we continue on with our daily regimen of therapies and medications and hope that we ring in the New Year with a healthy 4 year old!