Friday, October 19, 2018

Thoughts from 10,000 feet

Can I be honest for a minute here?
Homeschool is kicking my butt.
As in, constant chaos, and half the time I don't even know what day it is.

All 3 of us having ADHD doesn't make it easy. 
Some days, it's sort of like the blind leading the blind. 
Or more accurately
 "The easily distracted leading the more easily distracted. Oh look! A squirrel!" 

It's fun and we're all learning (at least I am - and I assume the kids are as well?), and nobody has killed each other yet (although that's not entirely from lack of effort on either child's fault - it's mostly my mad skills at breaking up fights). And I'm SO SO GLAD we're doing it.

But whew - the juggling of schoolwork and fieldtrips and client deliverables and work for Sisters by Heart, not to mention all the regular stuff of life and regular physical therapy to (hopefully) avoid back surgery for me - it's a lot! And most days, I don't quite have a handle on it. (Huge props to my fellow full-time working mamas - I don't know you do it all!)

But we're getting there. Bit by bit, we're figuring out how to live in our house allllll the time without making it look like it's lived in alllllll the time. And we're figuring out how to have fun while learning. I wouldn't say we've hit our groove quite yet, but I do feel like maybe I can see the groove right around the corner. So that's progress, right?

But that is all to say, I meant to post this update a few weeks ago, but well, everything, got in the way! So, I'm doing it from 10,000 feet in the air, en route to a cardiology conference in Chicago.

Bodie had appointments with his cardiologist and electrophysiologist in early October, and the results were better than we could have imagined. (and not just because he sat by himself for a blood draw for the first time EVER - and didn't even flinch!!!)

His heart function has improved!
I mean, let's not kid ourselves - it's not like normal function good, or even "normal for his half a heart before he went into heart failure good' - but better. A little bit better. His BNP (measure of inflammation from heart failure) dropped all the way to 9 (which is actually low for a healthy person, if you can believe it!). As his doctor told Bodie "your heart isn't dangerously sick anymore." It's still sick, but not nearly as sick as it was 2 years ago - and it's STILL continuing to improve! In fact, it has improved enough that his doctor dropped his middle of the day diuretics dose, leaving him with only needing medications 3 times a day!!!

On the rhythm side, we discovered that Bodie has been in atrial flutter pretty much since April. That means, for 5+ months, the top of his heart has been going at just below 200 to over 225 beats per minute! As far as we know, his ventricle was NOT going that fast, just his atrium. The reason we didn't catch it sooner is that he presented atypically. Think of flutter like a broken record - the heart is caught in a loop, on the same track. So you'll hear that track, but not the rest of the record. So, typically, you'll see not a large variation of rates (tracks), maybe 10%. But Bodie's variations were significantly more than that, going much lower and much higher. So we didn't realize it was flutter.

The good news is that his doctor was able to identify what it was and pace him out of it!

Here is the BEST news though. What we know about Bodie is that his body doesn't tolerate arrhythmias for long periods. He is ok with being in a faster heartrate about 50% of the time, as long as he is getting regular breaks from it. But when it lasts day in and day out with no break, we start to see behavior changes - he gets very easily frustrated with ANYTHING that doesn't go his way (as in, a zero frustration tolerance), very emotional, angry, very "triggery". just hard to deal with. Which makes sense, considering he's basically been on a constant adrenaline rush - none of us like that feeling. Well, he has been like that for months. And complaining off and on that he "felt yucky." But I didn't realize it was because he was in a near-constant arrhythmia (insert mommy guilt here).

Looking back, I am realizing I really noticed it starting last spring (probably April-ish - not so much of a coincidence), when he started complaining about how hard school was for him. Prior to that, he had been an excellent student. I talked regularly with his teachers, and we all decided that things just get harder in the latter part of 2nd grade, as more independent work is expected of the kids - and that was why he was struggling. And it totally seemed plausible.

Here's the thing with Bodie. He is such a complex kid. It's so hard to know at any given point what might cause a behavioral shift like that - is his heart failure worsening? Is all of the change (school closure, homeschool situation, etc.) just hard on a kid who needs routine? Is he not getting enough sleep? Is the undercurrent of stress running through our household too much for a kid who is very tuned into the emotions of those in his environment? Is he just hitting the wall that a lot of kids with heart defects ultimately hit in school, where we start to see the impact of years of oxygen deprivation on the processing speed of his brain? Or is he just being a defiant 8-year old and we need to push through it?

In short, we just don't know.
So we go one by one down the list until we figure it out.

In fact, the week before his appointment, I had him back at the therapist, for the first time in months, because I just didn't know how to help him.

As it turns out, I knew exactly how to help him.
I just didn't know I knew.
And his EP knew.
He paced him out of that flutter and by the next morning (really, by later that evening), Bodie was a different kid.

It's like we have our Bodie back.
He's still tempermental from time to time, because, well, he's Bodie. And he's human.
But it's nothing like it was.
It's manageable.
He's SWEET and WANTS to help.
And he's HAPPY again. And engaged. And just Bodie again.
It's been really quite unbelievable.

To say that we're grateful is an understatement.

I don't know how we (and he) got so lucky. But we will take it. Because we could use some good luck around these parts.

And thanks to the clean (well as clean as we're going to get) bill of health, we've gone full steam ahead with life!

Bodie started Jujitsu 2 weeks ago and is over the moon about it. LOVES it. (Mostly loves that he'll learn some cool moves to fight his sister, but hey, I'll take what I can get!).
And Sierra has been swimming and just started basketball (gotta use that 5'2" height for something, right?) She adores it - this girl may just have found her sport!

And we're fieldtripping like crazy.
Last month we did the Aquarium of the Pacific (in Long Beach).
Last week we did the Natural History Museum
(Bodie brought his beloved water buffalo stuffed animals to say hello to his beloved water buffalo buddies at the NHM).

And yesterday, we did the Santa Barbara Zoo.
What a sweet little zoo - it was empty and we had so much fun!

And Sierra just grew up. Like super fast.
How is that allowed?!?

So, as they say, full steam ahead.
Into the holidays.
Good thing that's not a busy time or anything.


Monday, August 27, 2018

Adventures in Homeschooling

We are officially one week into our homeschooling journey and it's been, well, interesting.

I have to admit, I've had some "what the heck was I thinking" moments - like that moment I realized my kids just put up with the math and grammar to get to the science and history. Which they clearly got from Dusk - I lived for English and Math. History? Not so much. And now I have to teach it? Ugh. Just ask my mom how much I "loved" social studies in elementary school.

And we've definitely had moments of sadness as we're seeing pictures of their friends starting at new schools. For Sierra in particular, it's hard as many of the kiddos in her classes landed at the same school. She really misses them. And I miss their moms, my mom tribe.

And Bodie and I have definitely butted heads. That kid is so much like me. SO MUCH. And there's definitely a learning curve to mom being your teacher.

But already, the blessings of homeschooling are becoming so evident to me. I keep having these aha moments where I am given 100% certainty that we made the right choice.

Like when the kiddos came home from their first day of enrichment academy. They LOVE it. As in, they don't want to leave at the end of the day and are over the moon at what they're learning. They are both developing a newfound love of math already, and are discovering there are multiple ways to learn things. Their eyes are definitely opened up and they're having a ball!

Moments like this morning, when we pulled out of our driveway to head to the enrichment academy. I looked to the left, at the insanely long line of cars waiting to turn left onto the main street by our house. The line we sat in 5 days a week for the last 6 years...and then I turned right. The traffic was light. Our drive was easy. We laughed. The pressure of the last 6 years is just...gone. It made me realize how much unnecessary stress we've added to our lives.  And it made me so hopeful that this year will be exactly what we, as a family, need.

And maybe my biggest aha moment came on Thursday. Bodie had appointments in the pulmonary clinic at CHLA - all went well, and he thought being "trapped" in the Pulmonary Function Test box was hilarious.
On our way up to the hospital, I told the kids if they finished the work they brought with them (math and science), we could go out to lunch on the way home. On the weird route Waze sent us on, we passed a random park that looked super cool. So we decided we would stop there, too. 

The kids finished their schoolwork while we were waiting for the doctor (most productive pulmonary appointment ever!). 
So we stopped by El Pollo Loco to grab some lunch to take to the park. 
(watching them grill the chicken totally counts as Home Ec, amiright???)

And then we stopped by that random park.
And we ended up staying for almost 2 hours. 
We wandered around, looking at all the different kinds of plants. We talked about the different kind of adaptations we saw.
And the kids climbed trees. 
And then climbed some more.
Guys, my kids never climb trees. We just don't have the time. 
But last week, they climbed trees for 2 hours. 
Homeschooling is helping my kids get some of their childhoods back. 
Childhoods that were taken due to illness, heart attacks, hospital stays, burglaries, housefires, and so many other things we couldn't prevent. 

But this, a moment to recapture parts of their childhood. 
This much we can do.  

Monday, August 20, 2018

The Curious Case of the Accidental, Intentional Homeschoolers

(Look ma, no uniforms!)

The kids have been at the same school since kindergarten. We loved it. We built lifelong friendships. We loved the incredible teachers who poured their heart and souls into giving our kids a strong Biblical foundation for life. We loved the home it gave our kids, the calm in the midst of the myriad of the storms life has thrown at us in the last 8 years. We had anticipated both of the kids going there through 8th grade.

But sometimes God has other plans. 

Our school closed abruptly a few weeks ago. We were devastated. So many, many, many tears were shed. I had endless conversations with the other families, learning where their children would be going this year. And we looked halfheartedly at a few schools. 

But nothing felt like the right fit. 

After a lot of prayer and conversation, it became abundantly clear to Dusk and I that God was calling our family in a different direction, to homeschool. (Yes, you read that right!)

There is apparently a term for people like us - "accidental homeschoolers." People who end up homeschooling by virtue of circumstance, rather than choice. Except, in our case, it wasn't so accidental. It's always been at the back of my mind, and we considered it when we enrolled Sierra in kindergarten, but for a number of reasons, decided to go with traditional schooling at that time. I have always felt that God was calling us to homeschool, but just not yet. I always felt there would be a time where it would be right - but I always envisioned I'd have more than 2 weeks notice when that happened! But God has a great sense of humor.

So yes, we're homeschooling for this coming year - and maybe beyond. Wherever God calls us. We're actually doing a hybrid approach to homeschooling, where they'll be going to a homeschool enrichment academy 2 days a week (1 started today) and then home with me the rest of the time. Since I work part-time, it's the best of both worlds for us - everyone gets a break to regroup, and we get extra help and support in the subject areas we'll need. And I get to teach the rest!

So, let's just get your questions out of the way (because I know you have 'em):

But how will they socialize? 
School isn't the only place kids get to socialize! We have several friends homeschooling as well and we'll be doing fieldtrips and meetups with them regularly. And the kids will be seeing other kids at the enrichment academy. And we'll definitely be trying our hand at organized sports this year, since we'll have more time to!

You mean, you're going to be with them, like 24/7? 
Well, yes and no. I mean, they're my kids and I like being with them. Isn't that sort of the point of getting married and becoming a parent, because you plan to make and raise human beings you enjoy being around? I've never been one of those parents counting down the days until school starts. I've always been sad when school starts and miss the kids terribly. That said, because we're doing a hybrid option, they'll be in "school" 2 days as week. 

Are you seriously going to teach them? Are you capable of it?
Well, thanks for the vote of confidence. But I'm pretty sure I can handle it. I mean, I have my BS, my JD and my CPA. I'm pretty sure I can handle teaching an 8 year old and an 11 year old. Could I teach an entire classroom? No, of course not - I didn't go to school for that, I haven't studied the best approaches to classroom management, etc. But, I know my kids best and I know how they learn best. 

Aren't homeschoolers weird loners with no social skills?
Right, because everyone knows there's no weird, loner kids lacking social skills in public or private schools. Enough said on that  point.

Aren't there good schools you can choose from? 
Of course. And we loved our school experience. Both of our kids thrived. But our school was unique - it gave our incredibly creative kids the chance to use their creativity and to learn at their own pace. For us, for now, the best option by far is this hybrid homeschool option. I cannot explain the sense of peace I have felt since we made this decision. 

But why????? 
We feel God has called us to this for a number of reasons. There are so many things we want to focus on this year. Besides discipling the kids, perhaps the biggest is just to SLOW DOWN. 

The last few years have been such a mad rush of "hurry, hurry, hurry" to go do something and then "hurry, hurry, hurry" some more. Living in a city is hard. It's so easy to get on the hamster wheel and not even realize the years are flying by. The time we do get to spend as a family has been limited and weaved with an undercurrent of stress and anxiety. 

God has been nudging me for the last year to make changes. He has been reminding me that our stress levels are too high, that our priorities are misplaced, that we only get one shot at this raising kids thing and we need to make sure we're doing it right. So this is our chance to heed His call, to step off the wheel, to slow down, to focus on us as a family. This is really giving us back a gift of time. Time to be with ourselves and each other. 

We're excited and we're ready. 
(Dusk doesn't technically start school until next Monday, but I couldn't resist the urge to throw him in with the kids today!)

Everyone's got mad goals...
Did I mention we're excited?

We covet your prayers in this new journey we're embarking on.
I know there will be bad days. 
But I also know there will be really amazing days.
Most importantly, I know we're heeding God's call.
And there's nothing like the peace in that. 


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.