The ones we love...

The kids and I got back yesterday from an awesome weekend up at my parents. 

We had an awesome day Saturday at the beach with Gigi and Popo…

...could you die from the cuteness in these kiddos? Cause I sorta could…(yeah, yeah, yeah - I know I'm biased)...

And then, we got to go to dinner with some pretty special peeps. 

During the course of Bodie's journey, we've have the pleasure of meeting some pretty incredible people. People who might never have crossed our paths were it not for Bodie's heart. These two are at the top of the list of favorite people we've met that way.

Cole and Katie.

Cole is a football player at Cal Poly, and is the one who walked with Bodie down the hill when Bodie was the honorary captain last Fall. And Katie is a sports writer for the Mustangs. We got to know them last Fall and have kept in touch since then. Both of these 2, by the way, are graduating this spring - and totally on the way to the NFL. But I digress. Their stellar accomplishments are not what this post is about. 

This post is about how awesome they are. These two incredibly nice and thoughtful college students, who take the time out of their busy schedules to love on our family. How lucky are we??? So so lucky.

Even if Bodie doesn't always think so.

(This was sort of Bodie's expression for most of dinner - but this is how he shows his love. Trust us.)

I tell ya, if every graduating college senior was like these 2, our country would have a bright future indeed. Their parents should be so, so proud.

After dinner, we went to the Cal Poly basketball game and had a ball. 

 And then, we ran into Cole again. And because he's just such an incredibly kind and generous guy, he took Sierra over to the cheerleaders. And we saw the sweet cheer coach who we met last Fall. The one who let Sierra meet all the cheerleaders and hang with them during halftime last time.

And this time, totally unexpectedly, she got to cheer.

 With the cheerleaders.

In the middle of the game. 

Seriously. 

Can you believe this? 

Because I SO COULD NOT. 

It was pretty ahmazing. 

And, you know, get thrown up in a stunt or two. 

I honestly don't know who was more excited - her or me. :-)

 Or, maybe Bodie, because he got to climb all over places he wasn't supposed to climb while I was taking pics of Sierra.

 After the game, Sierra got to dance with the cheerleaders on the floor.

And Bodie got to meet the basketball players. Who he totally ignored (seriously). And the tuba player. Who he totally did not ignore. And press some keys. He was pretty impressed.

But I'll be honest. When we got home and called daddy to tell him all about the evening, he was most excited about the rib sandwich he won on the AMPM scratcher Cole gave him. This kid is so weird sometimes.  

Like I said, we're beyond blessed to have Cole and Katie in our lives. Sometimes, big things come in little packages. And sometimes, they come in the completely unexpected form of big, burly football players with hearts of gold. 

 Thanks for being our guardian angels, Katie and Cole. We love you guys!

Minions for our Minion, Part 2. Everything Else.

As I mentioned in Part 1, yesterday was Bodie's birthday party and we had an awesome Minion themed birthday party! 

I should preface this post by mentioning that every.single.idea (yes, every cotton picking one) was stolen from someone else. I don't have an original thought in my head. Seriously, peeps, I'm an accountant - there's just no room for both creativity and numbers. It's one or the other, I'm afraid. Thank God for the internet. That's all I gotta say.

Anyway, check out this party! My kids are absolutely obsessed with Despicable Me and are quoting both movies all day long, so it was super fun to use it as our theme!

We pretty much did everything Minion we could think of, including overall decorations…

...Minion balloons (Bodie about peed his pants in excitement over these!) - the kids helped draw the mouths and hair…

…Minion signs everywhere. Minions even made it into our wall of family pictures. 

 and on both the outside and inside of the bathroom door!

We had a Make Your Own Minion station, which the kids LOVED. It saw lots o action (it was totally worth the hours spent cutting out countless minion parts!)

For food, we had "caterpillars which will never become butterflies" (cheese puffs)

 Chips, guac and salsa, brought to you by "Salsa & Salsa"

and Edith's Juice Boxes!

We also had that amazing cake and marshmallow brownie things which the kiddos LOVED.

We played "Pin the Goggles on the Minnion," which turned out to be super cute.

I will say, in talking about what a "fun and easy" game this was to create, Pinterest didn't mention the part where my almost 4-year old would be thrashing around on the ground, sobbing, because his eyes were covered and "I can't see, mama!!!!!" Pinterest FAIL.

Thankfully, both the

Box of Shame

and the Piñata were bigger hits. (but seriously, why does it take so.stinking.long. to break open a dang piñata??? I swear paint was drying somewhere faster than those kids were taking down that piñata!)

(Yeah, I'd say there's not much room for doubt that these 2 are related!)

But, in true kid style, they played the games for about 30 seconds (well, except for the aforementioned Piñata) and then destroyed the kids' bedrooms for the remainder of the party. That's ok, they had fun, which is all that matters! 

Bodie's 2 best (ok, only, but they're cool, so we're good with that) friends were able to come:

Tyler

(They say everybody has a Doppelgänger. Meet Bodie's.)

And Anika 

(kiddos were being held by Teacher Chelsea, who was one of Bodie's Teachers at his developmental preschool and has continued to be his teacher at his current preschool. She's moving on to a new school next week, but we feel SO blessed that she has been Bodie's teacher as long as she has!)

For favors, we had "minions" (twinkies) and "Vector's squid launchers"

And, finally, I will leave you with one of my favorite parts of Bodie's birthday parties - the picture of heart kiddos in attendance! We actually would have had 6 more CHDers there, were it not for nasty cold and flu bugs keeping their families home. Darn cold and flu season. :-( But we had lots of fun with 

Connor (such a LOVE), Barbara, Bodie and Townes - and Jeni, a 28-year old HLHS survivor!!! 

(I'm not sure how many open-heart surgeries there are between these 5 amazing peeps, but I'm guessing around 15 or so! WOWZA! Talk about miracles!)

I have such a fondness in my heart for these 3. Barbara was Bodie's roommate after his Norwood and Townes was the first CHDer we met in person - and has been a constant source of hope and friendship for our family! I love that these kiddos have been in Bodie's birthday picture every year.

From 2010 to 2014…I'd say that's the picture of "we've come a long way, baby!"

Happy Birthday, Bodie! We love you SO much! 

P.S. Thank you for picking Minions for your birthday party instead of water buffalos. Seriously. Thank you so much. 

Minions for our Minion, Part 1. The cake!

Bodie's 4th birthday party was yesterday. 

He initially wanted a water buffalo theme (yes, you read that right - it's a long story). Thankfully, he switched to Batman, and then eventually landed on Minions from Despicable Me. And we are SO grateful, because the party turned out absolutely adorable! There are just so many awesome things you can do for a minion birthday party!

We'll start with the cake, which truly deserves a post all its own.

THE CAKE. OH.MY.AWESOMENESS!!!

You may remember Icing Smiles providing cakes for both kids' birthdays Bodie's first year. Icing Smiles is a charitable organization that matches families of medically fragile children with bakers, who provide amazing cakes at no charge to the families. They did an incredible job that year, and, given how tough Bodie's year last year was, we decided to use them again this year. And oh my goodness, were we ever glad we did! They connected us with the.most.incredible baker on the planet, Christine Jelloian of Sweet Creations by Christine! 

Bodie and I took a special trip to meet her yesterday morning to pick up the cake. 

Bodie and Christine 

You see that flipping adorable cake peeking out behind Bodie and Christine? 

Here it is in all its glory - an amazing, beyond adorable MINION CAKE!!!

It went perfectly with our party theme of Despicable Me! 

And it was absolutely as delicious as it was adorable!

Lording over our sea of mini-minions (also known as marshmallow brownie minions Bodie and Sierra helped me make - a HUGE hit with the kids):

How amazing is this cake?!? Look at that detail!

The birthday boy with his cake.

And have I mentioned that this, all of it, was completely voluntary? Are you speechless right now? You should be! Please go to Christine's Facebook page (linked above) and show her some love from Bodie's fans!

Thank you, Christine and Icing Smiles, from the bottom of our hearts!!! You truly are "sugar angels" and your generosity means so much to us!

Love, Dusk, Amy, Sierra & Bodie

On the eve of FOUR

Our sweet Bodie.

Tonight, you go to bed a three-year old for the last time. Tomorrow, you'll wake up a 4-year old. Some days, we can hardly believe you have battled through so much to get this far. I remember standing over your tiny infant warmer at the hospital, willing you to keep breathing, to keep fighting, to stay strong for everything that lay ahead. It does not escape us that none of that was guaranteed. 

We can hardly believe that was four years ago. You are the strongest, toughest, craziest little boy we know. Three was tough all around, for all of us. Three included 2 major heart surgeries, 2 cardiac catheterizations, weeks of iv antibiotics and 3 serious head injuries (all within 7 weeks of each other). It included lots (and lots and lots) of tantrums. Full scale body on the floor, thrashing, screaming, caveman style tantrums. Over putting on underwear, making your bed, or wiping your butt after going potty. Threes have tested all of us, and truthfully, we're ok moving onto your fours.

But threes have also brought some mighty sweet moments. Learning to write your letters and to recognize your name. Starting AWANA as an official Cubby. Almost learning to stand with the Cubbies instead of screaming for mommy the entire flag time (maybe that will come with 4s?). Learning Bible verses. Schooling mommy and daddy on how to use the iPad. Buying your first baseball mitt. Lots of trucks. Making your first real friends. So many, many, many hugs and kisses.

Bodie, we're so excited for the fours and what they will bring. You're growing into such an amazing little boy. Thank you for letting us come on this journey with you.

Today, at your birthday party, we shared such a special moment. A moment that encapsulates who you are today. 

You, catching my eye, the look of sheer excitement exchanged. Just a moment. A moment of radiant, all encompassing love shared between the two of us. A moment reflective of the hours spent by one another's side, through pokes and prods and procedures. A love only deepened by battling life's journey's together. You and me, bud. In this together. 

And what transpired next. You blowing out your candle…

and then reaching for me…

Throwing yourself into my arms…

excitement radiating through every inch of your body. Too much love, excitement and passion to hold within your tiny growing body.

So much it has to be shared.

THAT is how I want to remember you at three, going on four. As this little amazing boy who wears his heart on his sleeve, who has too much love and excitement to keep inside. 

Happy 4th Birthday, sweet Bodie. We could not possibly love you more, and praise God every single day for His hand on your life and ours.

They say a picture is worth a thousand words

They say a picture is worth thousand words.

This one might just be worth a million

Bodie, playing catch with his beloved cardiologist. The same cardiologist who told me at 17 weeks pregnant that our sweet baby had a severe heart defect. The cardiologist who helped get me through a high risk pregnancy with laughter and kindness, who chuckled every time she pressed on my belly with the doppler and Bodie's heartrate would drop, commenting on how temperamental he was even in utero, how much a run for our money this baby was going to give us. Ah, we had no idea.

The same cardiologist who helped us navigate an incredibly difficult interstage period, complicated with multiple admissions. The same cardiologist who has talked me off a ledge more than once over low 02 sats, high heartrate and everything in between (as it turns out, not only is Bodie difficult to manage, but I'm not exactly a piece of cake, either! Ha!). We are beyond grateful for her and could not imagine this journey without her. To watch Bodie play catch with her today, a healthy and robust almost 4-year old, was incredible. So many hopes and dreams wrapped up in that moment. 

Along with a game of catch today, Bodie got a full cardiology workup. Other than the blueness and low sats, all checked out well, thankfully. We're pushing the med change admission to the first week of March, to accommodate everyone's schedules, to make sure we have everyone in the hospital when we need them (i.e. there is no way we are doing this med change without his Electrophysiologist in earshot!). We appreciate your continued prayers for that as we head into it. Lots of nerves all around.

Thanks for being there for us, Dr. Kim, for being by our side through it all. You're truly one in a million and such a blessing from God in our journey.

On why it matters...

Tonight is February 6, the eve of National CHD Awareness Week. Tomorrow is "Go Red" day where you will all be wearing red for Bodie and all of his amazing little heart buddies.

And I'm sitting here, trying to avoid it...like I do every year. 

February 7 kicks off an emotional time for me every year. For a week straight, I'm focused on the statistics, the stories, the realities of CHD. My Facebook feed is lit up with pics of sweet heart kiddos and angels. And all of the things I try to push to the back of my mind on a daily basis as we push on in our quest to lead "typical" lives outside of Bodie's heart defect. CHD week culminates with Valentine's Day followed by Bodie's birthday on the 16th and the anniversary of our sweet friend Travis's passing just days later. I try not to think about how serious Bodie's heart condition is, how scary it is, how statistically impossible it is that he's still here and thriving. But CHD week, and his birthday, and Travis's angelversary brings it all to the surface. How lucky we are. How that luck could be snatched from us in a second.

Why all of this matters. Because, this, the wearing red, the CHD statistics, the facts, the pleas to get informed. It all matters. It so desperately matters. 

Here is why it matters.

It matters because it's MY SON. 

A sweet 3-year old boy who loves Cars (all kinds), quotes lines from Despicable me and Frozen allllll day long, has never met a ball he didn't like and detests learning his letters and numbers (because he can't do them perfectly from the get go). A typical 3-year old boy. 

Typical…except for the whole 5 open-heart surgeries, 4 cardiac catheterizations, 5½ months of his life spent in the hospital and 7 medications he takes every day to help his heart beat as effectively as possible. 

He is my son, forever a part of my body, of my spirit. I have carried him in my womb, in my arms, in my heart. Like any mother, I want the world for him. I want him not to get tired out playing on the playground. I want the other kids not to look at him and whisper because his sweet pouty lips are perpetually stained a deep purple. I want him to dream big, to do big things with the lousy ½ a heart the Lord gave him. I want to have the same dreams for him that every mother has for her preschooler. Is that asking too much? I don't think so. If you were in my shoes, you wouldn't think so.

It matters because it could be YOUR SON. 

Just because it hasn't affected you yet doesn't mean it won't. It could be your unborn son, your newborn grandson, your neighbor's 6 month old baby girl who passes away from SIDS (did you know they estimate more than ½ of SIDS deaths are actually undiagnosed CHDs?). It could be your athletic 16-year old niece unexpectedly collapsing on the soccer field with an undiagnosed CHD. 

CHD's don't discriminate. Sure, they like families with a history of it a little bit more, but really, it's only a mild preference. There are many, many, many families who have CHD with absolutely no familial history. Just like cancer, CHDs can and do strike anyone. It could be your family. Don't think for a second that  it won't happen to you. 

Did you know that CHD's are the most common birth defect? As in 1 in 110 live births here in the US? In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Just like cancer can hit your family out of nowhere, so can Congenital Heart Defects. 

No one ever thinks it will happen to them…until it does.

It matters because it's a race.

Bodie, and all of the kids like him, are simply running a race against modern medicine. Right now, modern medicine is a few steps ahead of Bodie. He still has options. His single ventricle anatomy will fail. It might be next week, next month, or 20 years from now. But it WILL HAPPEN. Either his heart will fail, his liver will fail, or some other organ will protest. It's just a fact of the Fontan physiology. But today, his single ventricle heart is working for him. Right now, medicine has a few steps on Bodie. He can see the line of modern medicine, inching every so slowly ahead of him in this race, but he hasn't caught up yet. We hope and pray every day that he never catches up to that line, that we never see a day when there is nothing left that medicine can do for him, that we never run out of options. 

As things stand today, when Bodie's Fontan fails, his only other option will be transplant. When that time comes and IF he is lucky enough to get a heart, we'll be trading one set of problems for another. As in, we'll face a lifelong battle with possible rejection and re-transplant (did you know heart transplants don't last a lifetime?). 

But that's a big IF. And here's why. Indulge me for a moment as we do a quick economics lesson on supply and demand. Today, there aren't nearly enough hearts for those who need them. As Bodie and his cohort age into their teens and beyond, there is likely going to be an influx of new survivors, needing heart transplants.  Way more than there has ever been in the past, because these kids never made it that far before. The upside of saving all these kids with the single ventricle palliation? HUGE. They're getting to live their lives; they're THRIVING! They're going to school, and college, and getting married, and having jobs. Some are even playing sports! It's awesome!!! The downside? An expected large increase in demand for hearts as they age out of their Fontan circulations. An increase in demand on an already over demanded and undersupplied system. You do the math. Or economics. 

It matters because there's HOPE.

Yes, where medicine stands right now is pretty scary. But, it's not all bleak. There are a lot of amazing innovations thisclose to being finalized and available to help CHDers, particularly single ventricle CHDers. Ok, maybe not thisclose, but seriously, peeps they're coming. They're close and they are amazing. We're talking stem cells, ghost hearts (that the body won't reject!), and artificial hearts. These things are close and we just need to keep funding them to get them over the hump and available for Bodie and his buddies. It's an exciting, if nerve wracking, time to be a heart mama, that's for sure! If we can keep up the research, the options available to Bodie in 10 or 20 years may be vastly different than the options available to him today. 

THIS is why CHD Awareness matters! With awareness comes funding. With funding comes research. With research comes OPTIONS. 

Trust me. It just freaking matters. 

Are you fired up now? Good, then I've done my job. What can you do to help? 

Raise awareness. Spread links to Bodie's blogs, or to blogs or Facebook pages of any other CHD kiddos or adults you know. Make sure everyone knows the warning signs of a CHD.

Donate to research. If you want to donate to research, I suggest donating to the Children's Heart Foundation, who is solely dedicated to pediatric CHD research (unlike the American Heart Association, who gives less than 1% of every $1 raised to pediatric CHD's). Or, you could donate directly to a hospital working hard to advance research in this area. Pioneers who really could use funds for the amazing work they're doing to improve the lives of children living with CHD (and who I personally would support without reservation) are the Mayo Clinic, Children's Hospital of Philadelphia and Children's Hospital of Boston. 

Thank you. 

Thank you for caring.

Thank you for investing your time, and your energy, and your emotional reserves, into caring for my son.

Thank you for wearing RED tomorrow for him and all of his buddies, fighting this crazy fight every single day. 

Please make sure to email me pictures of your red!

Carry on, CHD supporters!

Red for our Hero, Take 3!

Ok, Bodie fans, it's TIME! It's time for our annual GO RED campaign! February 7-14 is National CHD Awareness Week, and it kicks off with Go Red Day - the day you wear red to support Bodie and all of his fellow heart buddies! 

Each year, we ask our blog followers to capture pics of them wearing red in honor of Bodie, and this year is no different!

If you would please wear red to honor Bodie on Friday and then email me your pictures (to amykbennett@gmail.com - or you can Facebook me with them), I'll share them on the blog! And if you wanted to include a sign saying where you're from or something about Bodie on it, we wouldn't complain. I'm just sayin. But really, we just want your beautiful, smiling faces and RED!

We so appreciate your prayers, love and support for our amazing little man! We know that's the only reason he's doing as well as he is!

Rhythm Nation

Oh, Bodie, our Bodie.

We got results from Bodie's latest holter study on Thursday. A holter is a temporary monitor that Bodie wears (he typically wears his for 5 days to a week) that records his heart rhythm 24/7. At the end of the monitoring period, we send it back to the company, they interpret the results and then send them to Bodie's EP. It's super helpful information because although we have an idea based on his symptoms what's going on, we don't know for sure. The holter gives us a true picture of what is actually going on.

The holter confirmed what we suspected: that Bodie is in EAT most of his waking hours. If you haven't been following our blog for long (or even if you have - this stuff is pretty complicated!), EAT is Ectopic Atrial Tachycardia. Basically, it means his heart isn't beating in its normal bump-bump bump-bump rhythm, but instead is all over the place, at a higher rate than he normally is. His heartrates aren't that high (typically, in the 140s, which is totally normal for a kid his age), but they're not a normal sinus rhythm. It's kinda crazy to listen to, because you can hear his little heart erratically beating, with beats all over the place. It's pretty unsettling. And it's super unsettling to Bodie - his body has never liked being out of normal sinus rhythm. His sats are pretty crappy these days (typically in the range of 70-85, NOT typical for a post-Fontan kid at all). We are assuming some of this is attributable to constant presence of his EAT.

So, we'll be changing Bodie's anti-arythmic med later this month. He has been on Amiodarone for 2 years now. If you want to have bad dreams tonight, go and google it. It is a crappy crappy crappy hecka scary drug. Some docs refer to it as "liquid poison." :-( It CAN cause multi-organ issues, including the thyroid, the skin (as hyper pigmentation), the liver and the lungs. Awesomeness. Luckily, Bodie hasn't exhibited any of those symptoms. But, we've gotten to the point where it just doesn't make sense to keep him on a drug with such bad potential side effects if it's not really helping him.

So, Bodie's cardiologist and electrophysiologist have agreed that it's time to switch drugs. We'll be switching him to Flecanaide. The good news? It doesn't have any of the negative side effects of Amiodarone! And it is VERY effective against EAT, and often stops it with almost the first dose. Like as in, no more EAT. Dusk and I would cry if that happened. I'm pretty sure. (If you happen to see Dusk, please don't tell him I told you that he will cry, but what can I say? It's so the truth.)

The bad news? It does have a slightly higher rate of lethal arrhythmias (how's that for something to keep you up at night???). Because of Bodie's structural defect and rhythm issues, his EP had elected initially to try Amiodarone rather than Flecanaide, and we agreed with that decision. However, we've now come to a point where, in our collective opinion, the potential benefits to Flecanaide outweigh the risks. Unfortunately, once you move out of the range of relatively benign beta blockers for treating arrhythmias, none of your options are pretty. ALL of the big gun drugs have worrisome side effects. We're really just at the point of weighing risks. 

Because the risk of cardiac events happening on Flecanaide are greatest at outset, we'll be inpatient when they start the Flecanaide. And we'll stay there until they get his levels right for his body. How long that takes is really up to Bodie's body. We're looking at being admitted Monday, February 24th. If all goes well, we may be able to go home as early as that Thursday. But it may be a few days longer. 

So, here's what we need:

1. Prayers for Dusk and I, for peace as we face this transition. It's a scary thought to put a child already predisposed to arrhythmias on a medication known to cause lethal arrhythmias. We have the utmost confidence in his team and are 100% in agreement with the decision. But that doesn't mean we're not scared. So peace for us and continued confidence in our decision would be awesome.

2. Prayers for Bodie's body, that he transitions on to the Flecanaide with no adverse cardiac events. 

3. Prayers that the Flecanaide WORKS! We have been dealing with this EAT for 2 ½ years now and we cannot imagine what a relief it would be to see it be G.O.N.E. We have a hunch his baseline sats will come up, but we'll never find out unless we can get the EAT gone. Please pray that this works.

4. Pray for Bodie to handle the admission ok. He's a pretty flexible kid with regard to hospital admissions (he's already looking forward to it, if you can believe that), but I always worry about how hard it is on him. Please pray for lots of visitors (anyone healthy and over the age of 18 is welcome to come visit us!) to help us pass the time.

5. Pray for Sierra, who will be juggled around again while he's in the hospital. She's such a sweet kid and tends to adjust pretty well to the revolving door, but I know she has to worry on some level. Please pray for grace and peace for her - and for her not to miss mommy too much.

As always, we covet your prayers for our sweet boy!!!