There are all kinds of things "wrong" with Lilah's systems, but the biggie, the trump card, is her heart. Every little hiccup and we worry it's her heart. It knocks you for a loop, obviously, to have a child in heart failure and not know it. So, I think it will take us awhile (and by awhile, I mean lifetime) to not assume that every fuss, every yawn, every cold toe is because heart is worsening.

Her cardiologist corrects us, this is not the way it works, she says. She has seen patients in florid

(I assume this is 'really bad' in layman's speak) heart failure with no visible symptoms and vice versa. Comforting, right? The only way to tell for sure how well Lilah's heart is pumping is to look via echocardiogram. There are a kazillion technicalities, but it basically boils down to your 5th grade health book. Blue blood in. Red blood out. And the efficiency of such. (right now, the AHA is frantically trying to sign me to tour and lecture, I know).

So every 6th months we go in (which is quite an improvement from daily and then weekly and then monthly), she lays there and watches Elmo on my iPhone and I steady myself. "Muscle looks bad", "hole not getting smaller" ,"need to keep an eye on this" ,"worried about that", come the comments as this wizard genius and uber-compasionate woman cardiologist runs the jelly stick over Lilah's chest. Today, she takes the measurements and retreats to calculate the change.

And, today: no change! This is perfect. Just what we hope for. Depsite the holes and irregular muscle and enlargement and so on.....her heart is pumping well. With basically no medicine (she takes BP meds, but I don't count that). That girl is one tough cookie!