Friday, May 11, 2018

Tears...the really good kind.

Today was the kids' annual FundRun at school. Physical stuff is tough for Bodie. Last year's run was especially tough for Bodie, as his heart failure was really kicking him in the butt. He only made it a couple of laps in before the frustration set in, where he noticed his own limitations as his peers lapped him. He managed to make it 70 laps last year, with several laps piggy backed or carried by mom to hit that mark, but there were some tears shed along the way.  

I wasn't sure what to expect this year. He seems to be feeling better physically, although little has changed with his actual heart failure since last year. 

But this kid. 
He never ceases to amaze me.
Today, he ran/walked 121 laps.
121 freaking laps.
All by himself.
I ran with him for some laps.
I chased him for some of those laps.
But I did not carry him for a single lap.
I did not piggy back him for a single lap.
I know, right? 

I honestly don't know how he did it.
With his degree of heart failure, he should not have been able to come even close to that.
And yet he did.

Earlier today, a teacher asked me whether I choked up every time I watched Bodie run. 
The answer is that yes, I totally do. 
Because he shouldn't be able to do this, any of it.
I have gotten really good at stuffing it down and compartmentalizing, because, well, who wants their mom crying every single time they freaking run?
Not my kid.

But the tears, they're all there.
Tonight, when I was telling Bodie how proud I was, he asked me about the tears in my eyes, about whether they meant I was sad.

No, bud. 
Not even close.
Just so proud I can't find the right words. 
So the tears will have to do.

And if we're talking about pride, let me mention this girlie here, with one of her besties, Rhiannon.
She was on the bigger track for the first time and was a bit nervous.
Let's just say our family hasn't exactly been blessed with athletic abilities, regardless of cardiac status.
But this girl, she blew me away today. 
She ran and ran and ran.
And then ran some more.
And logged more laps than most of the girls out there. 
And had the hugest smile on her face the whole time.

Maybe there's a track star in there.
Or maybe just a dreamer who loves to run.
Either way, we'll take it.

Oh, and if you're looking for other reasons I love that kid, I blogged about her recently for - you can find it here - My Tween and Me and our ADHD

Sunday, April 15, 2018

Spring Break Shenanigans

The week after Easter, Bodie had two appointments at Stanford, helpfully scheduled 3 days apart from one another. Since it was Spring Break, we decided to make the most of it and make a fun vacation out of it. And did we ever!

We spent our first night with Gigi and Popo before heading up to Palo Alto.

Up at Stanford, Bodie got a fantastic report from the heart failure team. In probably my favorite quote ever from a practitioner, the doctor noticed Bodie's energy level and said 

"If we can't catch him, we're not going to list him for transplant." 

We will SO take that! 
Barring any changes, we don't need to go back to Stanford for a year, which is really exciting. We do know that children Bodie's age and with his anatomy typically have long wait times once they're on the list (3-4 years + is not out of the norm), so if all goes to plan, he will likely still look pretty good when we list him. Our plan is to list him before he actually needs the new heart, so that he'll have time to wait for it. But the time to list isn't yet. So, for now, we enjoy life, and pray for guidance on when that time comes.

We spent the rest of that day exploring the incredible new grounds and children's hospital at Stanford. It's so beautiful! 
 From there, we headed to our hotel in Capitola (just south of Santa Cruz), where we stayed for the next 3 nights. It's so beautiful there!
 During our time there, we met up with our close friends, the Briends, for some Boardwalk shenanigans.
I mean, SERIOUS shenanigans. 
I cannot begin to explain how grateful I am for this family and their sweet little dude, Tyler. He has HLHS like Bodie and they're probably two of the most complicated heart kiddos Stanford has seen lately. They give everyone a run for their money. But the day at the Boardwalk, they were just two little boys, having the time of their lives. 
There is so much joy in watching these boys, and Jennie, Tyler's mom, is incredible. She is the funniest, most compassionate wise-cracking mom I know. And she makes me feel less alone in this journey. There is so much power in walking together. 

They mastered all the rides they were tall enough for.
And Sierra and I caught a few crazier rides (one of which snapped something in my shoulder that hurt for a week afterwards - riding roller coasters at 41, I'm pretty sure that's that would be "my brain writing checks my body can't cash").

And I have the dubious honor of having lost Tyler's hat on this ride, requiring the sweet maintenance man to climb all the way up there and get it 
(meanwhile, pretending like I had no idea who had done that, as the ride was shut down and people were leaving the line.) It was super awesome. Really.

After wearing ourselves out on the Boardwalk, we met up with the Briends the next day to take a train tide up into the Redwoods.

It was absolutely breathtaking!
This was HANDS DOWN my favorite part of Spring Break! So so so fun!
 Then the boys played hockey, ran circles around each other until Tyler's oxygen got disconnected, and Tyler got a bloody nose. All in like 2 hours. 
It's too bad these kids with HLHS have no energy. 

After our Santa Cruz shenanigans, we headed back to Stanford for Day 2 of appointments, this time for several hours of nuerodevelopmental testing. We don't have the official report yet, but lots of interesting information discovered that we're processing. I'm so grateful this type of testing is becoming more common for our CHD kids, as they are at such a high risk of learning disabilities and academic struggles.

We then headed back to Gigi and Popo's for a couple of nights. 
We rode golf carts
We went out to lunch with Judy, who has always been like a second mom to me. I am so grateful my kids love her as much as I do!
 Finally, we caught the cocktail hour at the local dog park and the kids were in Heaven. 

All in all, this Spring Break was a smashing success.
We are so beyond grateful that Bodie is doing so well that doctor's appointments were just a small part of Spring break, not the focus of the entire week!

Thursday, March 22, 2018

Just so we're all on the same page...

So, we have this family friend. This guy who is at our home almost weekly. In LA, that sort of makes you like inner-inner-inner you know all our secrets sanctum. So, this dude knows us and the kids reallllllly well. And we all love him. Anyway, he was over last weekend and says to Dusk "So, like, Bodie's done with all his surgeries and stuff, right?" 

For reals, guys. 

I'm pretty sure my head started spinning. Like straight out of exorcist spinning. 

I mean, how can someone who knows Bodie so well not understand the gravity of his situation?

After I picked my jaw up off the floor and my head stopped spinning, we sat down and explained that no, he is not done and that he is actually in severe heart failure and his next step is transplant. 

Our friend was genuinely surprised. 

Which should give you a pretty darn good idea of just how good Bodie looks from the outside. Someone who knows him really really well didn't even realize the extent of his heart failure. 

(By the way, I feel comfortable sharing this story here because the dude doesn't read the blog. Obvi. And, if I somehow guilted him into it by way of our conversation last weekend, um, sorry? But he shouldn't feel bad - B looks so good he fools a lot of people these days.) 

But, I digress. Bodie looks good from the outside. REALLY GOOD. His energy is great, he's eating us out of house and home and generally being the funny, ornery Bodie we all know and love. 

But with these heart kids, looks can be deceiving. They can compensate reallllllllly well. So, suffice it to say, I was pretty nervous heading into today's appointments with the heart failure and electrophysiology doctors. We were hopeful he would look stable on the inside, but didn't know what to expect.

Honestly, today's appointment couldn't have gone better. 
(Ok, that's a lie - his heart could have magically improved back to normal, he could have regrown the missing half of his heart, we could have won the lottery on the way in, etc. But, in terms of things that might have actually happened today, it could not have gone better.)

**His BNP (measure of heart inflammation as a result of his heart failure) is even lower than last time - it's at 25, which is considered low-normal. That is pretty astounding.

**His heart itself is smaller (less stressed and inflamed) than it has been since right after his last surgery. These side by side x-rays kind of blew me away. 
The one on the right was taken in August of 2016. The one on the left was taken today. His lungs are crystal clear and his heart is taking up less space in his chest cavity. Plus, his pacemaker just looks super cool on the bottom left. 

**His echo showed a tiny bit of improvement. Small, but definite improvement. Every appointment has been sort of a "maybe I could convince myself there is a tiny bit of improvement" conversation. But this time, there was a legit improvement. A tiny improvement, but enough of an improvement  for his symptoms to really abate. 

**His rhythm is about the same as it was last time. He's in an abnormal rhythm approximately 50% of the time, which is pretty consistent with his last appointment. 

The best news? Assuming the Zio Patch monitor we put on today doesn't show anything alarming, we got a six month pass until we have to go back. A SIX MONTH PASS, peeps. In the world of heart failure, this is huge. I honestly didn't even know kids in heart failure got six month passes between appointments. Of course, if anything changes, we'll bring him in sooner, but it's nice to not have to go in sooner.

Today was a very good day. 

He's still in severe heart failure. 
He will still need a transplant. 
Much sooner than we wanted or expected.
There is still no surgery they can do to avoid transplant. 
There is still no other medical option other than transplant. 
He is still on a boatload of medications (8 serious heart meds, to be exact) to keep his symptoms at bay.
Just so we're all on the same page here.

But, for right now, we're good. 
He's not listed for transplant yet. 
He's happy. 
He's thriving. 
He's just a regular second grader, obsessed with Legos and spiders and farts. 
We are so grateful for this respite between medical emergencies. 
We'll take it. 
Because we can get pictures like these.

This is Bodie with Dr. Anoop. 
Dr. Anoop was there with us on the night we almost lost Bodie. I will never forget her standing in the doorway of his ICU room for several hours straight, just watching him decompensate, watching and waiting and worrying right alongside us. So to get to run into her today, to get to see the two of them together, for her to see Bodie so full of life, it just meant so much.

And this one.
Bodie and his surgeon, the incredible Dr. Starnes.  
My hero with his hero.
Enough said. 

Saturday, February 17, 2018

The force is strong with this one

Today, we celebrated this little dude turning 8.

Hard to believe we've been blessed with 8 years with this sweet, silly, stubborn little dude. 

We have too many friends who didn't get to 8. Or 7. Or 6...
In a community where CHD takes too many children every day, we know we are profoundly lucky to still have this little guy with us, enriching our lives every day with his silly sense of humor and love of life. 
So here's the thing. 
When you've had 5 heart surgeries and are dancing around a transplant, birthdays are a huge freaking deal. And you go all out. So when Bodie asked for a Star Wars birthday party, with a Death Star pinata and a Death Star cake, of course I said yes.  

What I should have said was "um, how about a Lego party instead? Where everything is square shaped with nice even edges?" But I digress.

A Star Wars party he wanted. 
So a Star Wars party he got. 

Complete with a DIY Death Star pinata. 
I forgot to get a picture beforehand, but one mom did get this cool pic of the exact moment the candy started spilling out. 
And hey, it actually looks like the Death Star now.

And a Death Star Cake.
The cake that almost did me in. 
There were tears. 
So many tears.
All mine. 
All at midnight the night before the party. 
Dusk even offered to pick up a sheet cake when he grabbed the pizzas for the party. 
Which made me cry even harder.

But I managed to pull it off and it was such a hit. 
The cake was on top of a platform of rice krispy treats (also a huge hit), complete with an army of Storm Trooper cupcakes. (My first attempt with both a rice krispy treat cake layer and fondant.) 

And all sorts of fun themed foods.
"Yoda Soda" - green party punch
Obi Wan Popcorn Kanobi
"Sith sticks"
Oh, and "Vader Veggies" with "Droid Dip"

But the highlight of the party by far was this man. 
We have the most amazing neighbor who just happens to be Luke Skywalker. 
I know, right??? What are the odds?

He pulled up in his tricked out R2D2 car, and you could hear the kids squealing from a block away, I swear. 

And he gave the the most amazing Jedi training. The kids (not to mention the adults!) were enraptured by his knowledge and teaching. Each of the kids got to fight with him twice and the kids loved EVERY SECOND. 
(Yes, that's Sierra - and yes, she's grown a foot since the beginning of the year - and yes, she's in the most adorable Darth Vader dress ever!)

We were blown away and I know the kids were as well (by the training, not Sierra's dress - although the dress was cute!)

All of the kiddos got to take home training badges, pool noodle light sabers and official Jedi certificates. 

When all was said and done, Bodie told me it was the best birthday party ever. 

And if any kid deserves the best birthday party ever, it's this guy.
Ok, well, not that guy, but the one in that guy's costume
The adorable little blondie underneath that really bad dude's costume. 
(B is obsessed with Darth Vader and insisted on the costume, complete with the voice changing helmet. But then, he eagerly destroyed the Death Star Pinata and ate the Death Star cake - so he basically destroyed his home. So yeah. not quite sure what to do with that one.)  

But this guy, yep, he deserves the world. 
And I'll welcome any birthday party I can make so epic that this dude has to take a break from the fun.