What would you do if you weren’t afraid?

What would you do if you weren’t afraid?  If you could transform your fear into strength and get on with your dreams, what would be the outcome? Being afraid, truly afraid,  wasn’t a part of my life until I heard the words Severe Pulmonary Hypertension spoken the very first time.  Up until then my thought… [Continue Reading]

An Echocardiogram and other terrors.

I think I’m doing pretty damn good.  Parker has a sedated echocardiogram on November 12th and I have yet to hyperventilate myself into an oblivion. That’s because I’m making Reed go up this time. Yeah.  I wish. I know.  An echocardiogram is a non-invasive test.  It’s not that Parker is in any danger.  He’s sedated… [Continue Reading]

Showing Pulmonary Hypertension Who’s Boss

Every year Highland Elementary has a Hawk Walk.  The kids ask friends and family to donate a certain amount per lap they walk and that is the only fundraiser for the entire year at our school.  Usually Parker is sick when it’s Hawk Walk time.  But this year?  This year was Parker’s year to not… [Continue Reading]

EKGs, RSV and other letters I hate

I should have known last night when Parker climbed up into my lap and promptly zonked out that something was up. My kid that is constantly moving at the speed of light, slowing down enough to fall asleep by 7:00 p.m. We’ve been dealing with lots of mucus and super junky lungs. This morning Parker… [Continue Reading]


We’ve had to drag out the big guns.  The output of Parker’s nose has become dire and wiping simply isn’t going to take care of it. We attach this seemingly innocent little piece of plastic to Parker’s regular suction machine that we use to suction out his trach. Think of it as a high powered… [Continue Reading]

Breathing in Style

I was watching a show the other day where three different couples had redesigned a part of their homes and invited designers in to decide which couple would get the biggest bang of a return from their design dollars.  I sometimes like to watch design shows, but I tend to lean toward the ones where… [Continue Reading]