Tuesday, February 16, 2021

Does this shirt make me look eleven?

"Mama, I know your 10th birthday is a big deal, because you're double digits. And 13 is a big deal because you're a teenager. But 11 isn't really a big deal, right?"
*
Oh my sweet boy.
You will never have a birthday that's not a big deal.
You will always be our miracle.
You don't get to take birthdays for granted. 
Sorry not sorry, kiddo.

(Bodie even helped make his cake this year!)

COVID might have made it a little harder to celebrate like we'd have wanted, but we made it work. 

Bodie has recently developed a really sweet tight knit group of local boys his age who are also homeschooled.  It's all outside these days (thanks to COVID), and they're all country boys, so it's a little bit Lord of the Flies, but it's so awesome. 

We invited them over yesterday and had an epic Nerf battle party 
We were able to keep everyone outside and (mostly) with their masks on - Nerf protective gear for the win! 
Even the big sisters got in on the action.

The smile on his face says it all (well, it says he needs to pull his mask back up, but it also shows his sheer happiness). 

Sierra made a pretty epic fruit and veggie platter.

Birthday candles, COVID style. 
Ain't no way we were letting this kid blow out candles on a cake that was about to be eaten by others. Ha!

Last night, Bodie said to me "Mom, I know I say this every year, but that was seriously the best birthday party I've ever had."
I couldn't agree more.
Getting to watch him run around for 2 hours with the sweetest group of boys who love him as much as we do, and hearing him laughing hysterically...that was truly the best birthday gift I could have imagined for him. 

Our kiddo has found his tribe. 
A bunch of Lego building, Nerf gun shooting, "let's make our own tribe" boys. 
And we are profoundly grateful. 

So yes.
10 is a big deal because you're in double digits.
And 13 is a big deal because you're officially a teenager.
But when you're 11 and -
you've had 6 heart surgeries
and 5 heart catheterizations
and countless blood draws, x-rays and other procedures
and spent far too many nights in the hospital - 
11 is a big deal.
A very very big deal.

Happy Birthday to the bravest kid we know. 
We could not possibly love you more.

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Saturday, January 9, 2021

Hey, remember us?

I can't believe it's been almost a year since I've updated the blog!!! Suffice it to say, COVID has us all sorts of disorganized and upside down over here. Thankfully, we've all remained healthy, but let's just say the jury is still out on whether the Bennett four actually enjoy one another's company enough to be together quite this much...

The good news is that this little dude is doing GREAT. 

Since the spring, he's been seen by his team at CHLA twice and his team at Stanford once. Our last appointment with CHLA was just last week, and both teams are really happy with how well his heart is holding up. His function continues to be depressed, but only mildly so (quite an improvement from when he first went into heart failure, to be sure!). His BNP (measure of heart inflammation) continues to be low, and he's riding his pacemaker 90% of the the time (which is music to our ears - when he's not riding his pacemaker, he's in funky rhythms, so we want him riding that thing as much as possible!).

He sees his CHLA team every 6 months, and his Stanford team annually. We're grateful to be in this time of stability and are grateful for every day Bodie gets to remain this stable - we're hoping for a long time in this stage!

It's hard to believe we've been at this heart failure dance for 4 years now. The picture on the left was taken the day he was initially diagnosed with heart failure; the pic on the right, with the same Vader, was taken last week. 
Can I call it a dance? Man, if it's a dance, it's like the horrible awkward Junior High dance that no one actually wants to go to. 

But I digress. He's doing great. 
He's loving horseback riding, taking weekly lessons. He's even been kind enough to allow me to join him on trail rides this year, and I'm loving our time together. 

And this girl is doing great, too! 
She's growing like a weed - although I still have a couple inches on her (I think!), I'm getting pretty uncomfortable with the fact that she's looking me right in the eye these days! She just donated her hair again (for the 3rd time!), and continues to impress us all with her beautiful singing voice (definitely inherited Dusk's musical talent). 

We continue to be so grateful for your support and prayers for Bodie!!!!