Friday, August 11, 2017

Full steam ahead

Bodie had appointments yesterday with his team at CHLA. We saw both his electrophsysiologist and his heart failure cardiologist.

From an electrophysiology standpoint, things have significantly improved.  Due to Bodie's sinus node dysfunction, his heart is generally doing 1 of 2 things - riding his pacemaker, or being in atrial tachycardia. Our goal is to get him to mostly being paced. At his last appointment, he was riding his pacemaker approximately 13% of the time. Thanks to adding a beta blocker, he is now riding his pacemaker 50% of the time. This is VERY good news. Being in tachycardia less is so much better for his heart.

From a heart failure standpoint, he is holding steady. His BNP (measure of heart inflammation) is continuing to trend downward, which is FANTASTIC. It is now down to 40, which is normal! His valve regurgitation has pretty much completely gone away. Both of these are good indicators that his heart is not as stressed by the dysfunction as it was earlier this year.

He's also finally growing, which is wonderful. He has struggled with growth courtesy of his heart failure. But he has grown an inch and gained 4 pounds since March, so we are thrilled!

But his heart function as a whole is...unchanged.
Unfreakingchanged.
Still barely moving at the bottom. 
Severe dysfunction. 
Barring a miracle, I think the chapter on his heart healing itself has closed. 

So the question then becomes, given how quickly he decompensated last Fall and the fact that we still aren't 100% certain on the etiology of that decompensation, how likely is it to happen again and how does that play into how soon do we list him for heart transplant? 
It is a balancing act, and we're not sure where we'll land just yet.

So we move full steam ahead to Stanford late next week for a transplant evaluation and then figure out where we go from there. We covet your prayers for that appointment. For wisdom, for clear decisions and for peace for all of us. We're starting to get to the tougher discussions and that's hard on all of us, not least of all, these two.
I still struggle to wrap my mind around the fact that we're having conversations about our 7-YEAR OLD having a heart transplant. The enormity of it overwhelms when I really let it sink in. I mean, is this seriously my life? 

But while it's hard for Dusk and I to wrap our minds around all of this uncertainty, we have a lifetime of experience to guide us. Our kids have 10 years and 7 years.
Nothing about this is easy.

Please pray as we move full steam ahead. 
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Saturday, July 29, 2017

Tahoe...the one where we LIVED.

13-day epic roadtrip. 
11 cities. 
Over 1,600 miles. 
Lots of laughs.
A few catfights 
(oh who am I kidding, a few full on WWF fights between the kids, if I'm being 100% honest here). 
But we survived - and were all still talking to each other by the end of it!

This trip was fueled by some serious emotions.
Because, here's the thing about raising a medically fragile child: you don't know what the future will bring.

Of course, nobody knows.
But we're just reminded of it every.single.time we look into this sweet face.

In a few weeks, we go to Stanford for a heart transplant evaluation.
We don't know what next summer will look like, whether Bodie will be in any position to travel.
Heck, we don't know what next month will bring.
So we throw ourselves into NOW, because that's what we got.

So, this trip...

We played in the snow at over 9,000ft
 
(well, if you're Dusk and Sierra, you played in the snow -  if you're the less adventurous type like Bodie and I, you sit at the bottom and watch Sierra slide down - I mean, we're living more in the moment now, but let's not get crazy here...)
 

We swam in a pool next to sharks (no pics of that - sorry!)

We hiked in the forest and in the meadows.
 
We (ok, Dusk and Bodie) spent hours building tree forts - and then swinging from the branches in said forts.
We ate s'mores with Popo Alan.
And braided our hair to match Grandma Jan.
 
We waded into the lake with our clothes on...because it was too warm and beautiful not to. 
We had too much sun, too much water, and ate too many s'mores (just kidding - no such thing!)
We rounded out our trip with time spent with our heart buddies at Camp Taylor

And at the Monterey Bay Aquarium.

An on our way home, we made an impulse stop to feed some ostriches and emus, because...why not? 
  

We came home exhausted and spent, with laundry for days. 
But it was worth it. 
It was all worth it. 
Even the WWF fights. 
Because we were LIVING. 
While this crazy journey we're on permits us to. 

This is one of my favorite pictures from the trip, of the kids and I at the wave wall (I'm sure that's totally the technical term for it) at the Monterey Bay Aquarium.  
It was hands down my most favorite place at the Aquarium (possibly because the sound drowned out all the other sensory overload the rest of the Aquarium had sent my way). And the kids loved, too - their looks of surprise and excitement were awesome. We just sat there for some time, letting the waves crash outside the glass surrounding us. 

Such an incredible reminder that, even in the midst of the waves crashing around us in our lives, of the walls crumbling down around us, there is always a sweet, quiet spot to be found. A spot to sit, to seek the beauty around us, and to just BE in God's presence. Such a powerful reminder as we go into the next phase of Bodie's medical journey.


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Thursday, June 15, 2017

Stable is as stable does.

The kiddos finished school yesterday, and kicked off the summer in style, with lunch with friends, swimming, s'mores and a late night movie in the first 24 hours alone...
and an echo, ekg and marathon appointment with the heart failure team.
(wait - you mean every kid doesn't start the summer that way???)
And can you believe this kid? Cool as a cucumber, just chilling watching a movie during his echo. SO mature today. Didn't even cry during his blood draw. 

The good news is that Bodie is stable, with maybe even a tiny improvement in his function. Although the improvement isn't super noticeable, his BNP (measure of heart failure) is continuing to drop, almost to normal levels (down to 94 - from 230 at his last appointment in March, and over 900 at its peak)! And the valve regurgitation we were seeing has slowly been improving on each echo, and is no longer even seen. All very good news and good indicators that his heart, despite severe dysfunction, is relatively happy with the cocktail of medications he's on. 

In other words, he is compensating well, both on the inside and the outside. His nausea has been kept fairly well at bay, thanks to changing the timing of his meds. And, other than his exercise intolerance, he's feeling pretty good these days, thankfully! It was nice to have the echo and bloodwork confirm what we've been seeing. 

However, we all know he cannot compensate forever. So we have been talking to UCLA, CHLA and Stanford about when to evaluate and ultimately list him for a heart transplant. He is compensating well enough that I don't believe anyone wants to list him yet; however, we want to have these discussions while he is doing relatively well and we have the luxury of time to research and make decisions regarding care. Nothing definitive yet, but we will likely be having more serious conversations about that this summer, including when to start actively treating the rather large number of antibodies he has (his specific antibodies as they currently stand are likely to make him reject a heart from a large portion of the population, so we have to be very intentional about how and when and where we choose to try to reduce them prior to listing him). 

These are conversations we knew were coming. 
Even so, conversations that make my brain - and my heart - hurt. 
Conversations no one wants to have about a loved one, especially your 7 year old. 
We covet your prayers as we have these discussions, and go through the process to determine which center will best meet Bodie's (and our entire family's) needs.

In the meantime, we are breathing a big sigh of relief that he is stable - and getting ready for some big summer plans. We were excited to get clearance today for our Tahoe trip, a trip to Florida for my parent's 50th wedding anniversary, and heart camp!

Maybe not the most typical way to start the summer.
But we'll take it. 
And we plan to spend this summer enjoying the heck out of it. 
If we have learned anything on this journey, it's that nothing is promised.
That rings especially true when you're gingerly stepping into a new path on the journey.
So we plan to take these moments while we have them.
Summer, here we come! 

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Thursday, June 8, 2017

The faces of resilience

So the kids' school had their annual awards ceremony this morning.

This kid got HONOR ROLL!!!
This kid has had one hell of a school year. 
He started the year 2 weeks out from heart surgery, and was in full blown sudden and severe heart failure by November. He spent the next few months in and out of the hospital and doctor's appointments, suffering from on and off heart failure induced nausea and exhaustion. And, although he has adjusted to his new normal, things are far from settled even now. And yet, still, in spite of the chaos and the uncertainty and the days he just didn't feel well, he pushed through and kept on his schoolwork the best he could. 
He earned honor roll today. 
That is nothing short of spectacular. 

But wait, there's MORE!

This girl cleaned up on the awards.
She ALSO earned HONOR ROLL!!! 
In a year where there was complete chaos in our lives and a home shrouded in worry, she dealt with her own diagnosis and new medications, and she pushed through and worked her little tail off. We seriously could not be prouder of this girl.
She ALSO earned a band award as well as her class 1st place spelling bee award. 

Both kids also earned church attendance (I love that our school recognizes how important church is to a child's upbringing and rewards families who place a priority on it!) and perfect punctuality (which really Dusk and I deserve as well, because it's freaking H.A.R.D. battling through traffic to get kids to school in LA on time!). 

Which brings me to the final picture.
Yes, our kids are awesome.
So awesome.
But let's be real. 
They didn't earn these awards on their own.
The mere fact that they earned any award other than "I made it to school some days, and occasionally even had my teeth brushed and shoes on when I got there" is a miracle given how rough our year has been. 

So, really, the awards belong to Dusk and me just as much.
(I'm not sure my favorite part of the picture - our expressions, the fact that it's blurry, or the American Girl dolls looking down over us!)

If all of our faces - Dusk's, mine, Sierra's and Bodie's - are not the faces of resilience, then I don't know what is. 

If there were an award for most resilient family, we'd have to be in the running. Just sayin. 
If you hear of one, feel free to nominate us. 
In the meantime, we'll be here rolling in the awards.
Because that's not weird.
Just resilient. 
Or at least that's what we're calling it. 

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Friday, May 12, 2017

But mama, do these laps count?

Today was the kids' school's annual FUNDrun. 
You know the thing some genius came up with once, where all the kids in school run for hours on end (or maybe it just seems like it?) and people sponsor them and the school makes money. 

Great idea.
Unless your child happens to have endurance issues, in which case, it becomes a day fraught with emotion and worry, and yet another reminder to your child of just how different he is.

I have been so nervous all week leading up to today.

Do I tell Bodie to take it easy? 
I don't want him to push his already extremely taxed heart past what it can currently handle (which isn't very much, if I'm being honest).
But what if he CAN actually do more, and I sell him short by telling him ahead of time to be ok with just walking?

Cue the big emotional "girl, you are seriously overthinking this, just tell him to HAVE FUN" speech.

So that's what we did. I told him to have fun. And that I would be proud of him no matter how far he ran. And I expected him to run maybe 10 laps (the average for most of the kids is 90-100).

He ran 3 laps. And noticed how he was immediately lapped by every freaking kid there (and probably would have been lapped by their pre-walking toddler siblings if they were actually allowed to participate). My heart broke and I had to hide my eyes filling with tears as I saw him come around to take a break, his face defeated, and sit next to me to cuddle. All I could think was please, dear God, let this thing be over soon.

But then a wonderful thing happened. 
The crowds thinned a bit.
Some of the kids started walking.
And suddenly, Bodie wasn't the only one going slower. 

And this kid got back up and started walking.
And I'll be darned if he didn't do 70 laps. 70 freaking laps, people. 
I did a few with him, and piggy-backed him for a handful of laps. 

During those laps, he asked me over my shoulder "but mama, do these laps count?" 

Oh sweet boy, you have half a heart and that half a heart is so tired right now. You just did 60 laps. Yes, buddy, these laps you're riding on my back ABSOFREAKINGLUTELY count.

I could not be more proud of this kid. Of his tenacity. Of his brave attitude. Of his smile. Of his lousy freaking half a heart. 

I tried to catch a picture of him running, but I wasn't successful. I, did, however, catch this one.

And these two, with his closest buddies before and after the race.
And one with this girl. 
Who, in her own right, made me incredibly proud. She ran over 100 laps. But she didn't do it in a race to run the most laps (she wasn't even close). She did it by holding hands with the younger kids, and checking to make sure they were ok and getting their laps crossed off. She got what it was all about.
 I love this boy. And I love his sister. 
Every day, they continue to teach me what life is about. 
And about how every lap counts.
Every.single.one.
Even the ones where you need a lift from someone who loves you. 
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Sunday, May 7, 2017

TEN.

Our sweet Sierra,

DOUBLE DIGITS.

DOUBLE FREAKING DIGITS.
I am still trying to figure out exactly how that happened.

As a 3-year old, when I told you were growing up too fast, you put your chubby little hands on my cheeks and said "Don't worry, mama. I'll grow down." Somewhere along the way, you seem to have forgotten that promise. 
But I digress.

Double digits it is. 
Sweetheart, we are so proud of you. 
Of this amazing young woman you are growing into. 

If we thought the first decade of your life was full of insane and exciting adventures, it kind of seems like it has nothing on the next decade. During the next 10 years of your life, you'll learn to drive a car, pick a college, move out (gulp!) and, most importantly, figure out who YOU want to be. And maybe even find your spouse (but let's be clear here - we're cool with you meeting him in the next decade, but not so much actually marrying him during that time - after college, honey!!!).

As you head into what are sure to be tumultuous years (for all of us!), the best piece of advice I can give you is to BE YOU. It seems easy now, but soon, it won't be. Soon, the pull to be like everyone else will be so so SO strong. But dig in deeper than the temptations, the forces pulling you away.

Just do YOU. 
The you that God made you to be.

The silly sweet girl who notices everything and isn't afraid of any new experience.
The girl who this little dude absolutely adores (well, except when he's scratching and biting you).
The girl who has an army of peeps who love her dearly.
The girl who loves dolls 
(yes, still at 10. I know I get frustrated sometimes, but then I have to check myself, and realize that there are MUCH worse things you could be playing with than dolls at 10. Between you and me, if you want to do every one of your next 5 birthday parties at the American Girl Doll store again, I am so OK with that).

 So sweetheart, as you enter this next decade, just DO YOU.
Because the you that you are is this joyful and messy and wild and crazy girl, because she embraces life.
And she is unlike anything the world has seen yet. 

Happy 10th birthday, sweet girl! We love you! 
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Thursday, April 20, 2017

I will not take these things for granted

There is a song in the early 90's by the band Toad the Wet Sprocket called "I Will Not Take These Things for Granted." It's an incredible song, and it was sort of the soundtrack to my late high school and early college years. (As an aside, urban legend has it that it's written about someone in jail, so maybe not the best life song, but whatever, I was a teenager, so it therefore meant whatever I thought it meant personally to me, because, you know, I knew everything...) 

In any case, it has been on my mind all day today.

Here is why.

Facebook reminded me this morning that 7 years ago today, we almost lost Bodie. This was my post at 11:07pm that night...

"Bodie has had an extremely difficult evening. He may not make it through the night. Please, please, please pray for a miracle for our sweet boy!!!"

That night seems so long ago. A night I wouldn't wish on anyone. Bodie has given us a lot of scares in his short life, but that night probably tops the list. We were so so close to losing him. Code meds were drawn, we were told to consider calling family. We honestly didn't know if he would make it through the night. 

And yet he did. 
God saw fit to protect our son that night.
And in so many nights since.

I know our scary moments are far from over. 
Bodie is in full blown heart failure. There is no easy path forward. I know the path will include more scary moments. 

But today, I didn't want to think about those. 

Instead I chose to focus on the sweet boy in front of me, jumping in and out of the pool, laughing hysterically and grinning ear to ear.
The boy who proudly stood on this raft in the middle of the pool for 5 and 1/2 minutes (no easy feat for a kid whose abdominals have been cut into on multiple occasions). 
The boy who loves with wild abandon and just spent 10 minutes hugging and kissing me "just because, mama."
I do not take these moments for granted. 
Not one single moment.
These moments were never guaranteed. 
Not for Bodie.
Not for us.
Today, we are unspeakably grateful for this boy and our moments with him. 
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