Thursday, January 29, 2015

Red for our Hero

This dude.
  Yep, this one.

He ROCKED his Electrophysiology appointment today.
Rocked it.
Satting 94% and grew another inch.
Still at 39 pounds, but at this point, he's been that weight for so long, I'm assuming he'll be 6'4" and 39 pounds as a fully grown adult. 

But as far as the heart stuff, he's looking good.
He's complicated.
Really complicated.
Complicated like a super difficult version of Sudoku where you have an open spot that could have any 1 of 9 numbers, but really can only use one and you have to look 9 different ways to make sure everything else is coordinating appropriately. Oh, and whatever number you do put in will change approximately 9,958,789 numbers elsewhere on the board. 

But we already knew that.
We're extra thankful today for a brilliant Electrophysiologist who can think around the parameters of Bodie's complex little heart (as he said today, Bodie's pacer issues are so complex, it's sort of like adding a 3rd major complication in - 1) HLHS, 2) CPVT, and 3) Pacer issues. Awesome.). 
But, with a lot of patience and brainpower, thankfully, he figured out a way to make it all work.

Surgery is still on the horizon (not open-heart, but heart surgery nonetheless, to clip the nerve that sends adrenaline to his heart). And it has a huge potential upside for Bodie. But we're all in agreement that it's not the right time for it now.

Bodie's in a good spot right now. Thriving. Living his life. Making big strides socially at school. So we're going to leave him be and let these strides keep happening. It's a sweet spot to be in.

Please help us honor our sweet little dude, and all of his heart buddies here and in Heaven by wearing red, along with us, on Friday, February 6th, National Wear Red Day. (Yeah, yeah, I know - that's national wear red for women's heart disease or something like that - but, what can I say, until CHD has its own day, that's as close as we're getting, so we're taking it.)

Please grab that red shirt or sweatshirt, throw it on and think proudly of Bodie next Friday! And pass the word along so that others can participate as well! And email me pics here or on Facebook or text (whatever way you have to get ahold of me) - and let me know where you're wearing your red. And I'll put together a video like we did last year! 

And if you need a little inspiration, check out this gem I made for Make a Wish. We were recently invited to a Make a Wish event to share our story, and I made this video for that event. Enjoy.

 (if you can't see it, the video can be found here)

Wear Red for Bodie!

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