112

 
I will write more later but all I can muster right now is 112.

That's what Simon's BNP is. It measures how distressed the heart muscle is. It was 3900 almost exactly two years ago. 100 and under is 'normal'.

Simon's is 112

can't stop smiling

Miracle Worker

 
Simon had an awesome cardiology visit yesterday. His shortening fraction is up to 25% from 21% on the last visit and now falls within 1% of what is considered a "mild decrease in function". Dr. Rosenfeld heard no gallops or problems and instead heard a strong, slow heartbeat. The echo showed that his left ventricle is slightly measurably smaller than last time (4.0 versus 4.3, not sure what the units are) which is great news as we want his ventricle to get more "toned" and less "flabby". Best of all, we don't have to go back for 6 whole months! We've gone from a schedule of a visit every week when he was first released to twice a year. I don't know that I ever thought we'd get to this point, honestly.


When Laura called me to tell me the great news about Simon's Cardiology visit, my first thought was:"You did this. This is the fruit of your work, Laura."

So here's a shout out to the woman who has nursed a little boy back from the brink with love and patience and time and sweat and tears.  I'd venture to call her a miracleworker.

Your sacrifices of time and energy and basically everything that was "yours" are not in vain. Keeping on top of his feeding and making sure his meds happen on time and are the right dose, making sure he gets extra food if he barfs it up, taking him to his appointments, leaving social situations that you desperately want to stay in because there's a sick kid, wiping down the swings, practicing his words, talking to him non-stop, bringing food out to play with when it's time for a feed, driving him for naps when you think you might fall asleep at the wheel, reminding him "legs out", schlepping him to San Francisco for Feeding Therapy and Alameda for Speech Therapy and being home on time for OT and taking him to PIP twice a week and to Cardiology and GI and regular doctors appointments...

You have created the container he needed for his body to begin healing and nurtured the tender, weak spots left from his days in the ICU. He's not just physically healing, but he's catching up developmentally and it's 99% your doing.

This latest visit is the tangible proof of your work. There were doctors and nurses who thought we might never make it out of the hospital with a live child. But we did. And not only is that child alive, he is so HERE, so firmly on the Earth and so happy to be here that he stops people in his tracks with his light. You have been feeding his light for almost 2 years, Laura, and it's blindingly bright. I know you haven't done it completely alone, but you have done the lion's share.

I will never be able to express my gratitude for keeping our son alive and bringing him to the point he is at today. Our boy is thriving and it's because of you.
Thank you, Laura.

Your eternally grateful wife.