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!!!

When the little things aren't so little...

Sometimes, I wish little things could be just that for Bodie. Little things that don't hold much meaning. Instead of being little things that hold great, big meaning for a kid with a ½ a heart.

Bodie has complained a handful of times over the past month about his belly button hurting. He has the most sensitive skin on the planet. Seriously. And belly buttons are just weird and sensitive anyway. So we figured it had just rubbed on his clothes and didn't really think much of it.

Until yesterday, when he REALLY started complaining that it hurt and it started getting red. Uh oh. My ptsd laden mind went immediately to Eli's story, how his pacemaker infection went away and then came back 3 months later. All I could think was about was the proximity of his belly button to his pacer and "is that the pacemaker infection? is it coming through his belly button?" Needless to say, I was pretty unsettled.

So today we went to his pediatrician, who said he could't tell whether it was infected or just irritated, but that he thought we should have the CT team weigh in. So, a picture and 2 phone calls later, we had the directive from CT surgery that they wanted to see Bodie today. So, I packed a bag (fully expecting to be admitted), picked both kids up early from school and trekked the 90 minutes from Venice to Hollywood. Yes, 90 minutes to go 13.93 miles. After that drive, let's just say I totally get why people have road rage. Gotta love LA.

When I was driving and my thoughts weren't drowned out by Bodie's "I didn't take a nap so I'm therefore going to be pissed at everyone and everything that is not going EXACTLY as I wanted" screaming on said 90 minute drive, I was remembering the last time we drove up there for the CT team to "take a look" at a potential pacer infection. I was thinking about how that visit ended with an admission, a picc line and 6 weeks of iv antibiotics. My mind was absolutely going through the worst-case scenarios. Ptsd much?

The NP and the surgeon both looked at it and the general consensus seems to be that it's not related to his pacemaker (in layman's terms, the kid probably shoved a dirty finger into an itchy belly button to scratch it and infected it). Thanks a lot, Bodie. But, because he IS Bodie and because this IS a pacemaker we're talking about here, they wanted to be conservative (heck yeah, we're so totally down with that!), and start him on a short course of oral antibiotics. And we're to bring him back if it looks like it's getting worse, he starts running a fever, etc. 

Thank God it didn't result in an admission and thank God we didn't have to have discussions about how deep this infection could possibly be and the implications of that. We're feeling very grateful for that tonight.

But it struck me, as I was driving home, how hard this life with a CHD kid is sometimes. Most of the time, the little things for typical kids are also little things for Bodie - a cold, an ear infection, a random virus. Whatev. He takes a licking and keeps on ticking. He's tough. But then, I find myself unexpectedly driving like a madwoman through the streets of LA racing up to CHLA for an irritated bellybutton??? and I am reminded once again that Bodie's life will always be a little different than his peers. And that makes me sad.

Apparently, I'm the only one hanging at this pity party.

Cause this kid, he ain't got time for pity. He's too busy living and loving his life.

Thank God for that. 

Tonight, please pray for continued resilience for Bodie. Please pray that this is just a silly belly button thing, and not an indication that his pacemaker infection is back and more virulent than before. 

Pray for the little things to get a chance to just stay the little things for our sweet Bodie. 

There but for the grace of God go I...

I've been saying this a lot this week.

When they admitted us for Bodie's pacemaker infection and went over all the possible risks, they included some VERY bad worst case scenarios. We're watching a friend in the heartland living out those worst case scenarios right now. 

A sweet little guy, Eli, Bodie's age, who had his Fontan almost a year ago. He has been battling a pacemaker infection almost since then. He's had several rounds of iv antibiotics, but they weren't successful at keeping it away. Staph Aureus - the same strain that Bodie had. And the infection originated in his pacemaker (just like Bodie), but, unlike Bodie, his wasn't superficial - and it spread to his Fontan conduit. 

On Tuesday, he was in the OR for 7-8 hours (on bypass 4 of those) having his Fontan revised and his pacemaker removed. This was exactly what CHLA warned us about, and their whole rationale for treating Bodie so aggressively even though his infection appeared only superficial in nature. Eli has been struggling since surgery and has been having seizures. They're now thinking he may have had a stroke. My heart is so heavy for this family tonight.

CHDs are awful. And to see one of your worst case scenarios play out in a fellow heart patient is horrible. Absolutely horrible.

I have so much sadness for this family, for this hardship they shouldn't have to be facing. Eli is post-Fontan. This is supposed to be the good part, where you don't have to worry so much anymore, where you get to enjoy life. It is so profoundly unfair that because of a stupid infection they're facing this. 

And I have so so so much guilt. Truly, that could have been Bodie, in the OR 2 days ago. It almost was. And that could be me by his bedside, hoping so desperately for a sign that my sweet boy is still in there, somewhere, just waiting to come back to me and fight back against any odds thrown at him. Instead, my son lies beside me, in his firefighter jammies, the rhythm of his sweet breath music to my soul. I get to worry about whether he'll throw a dramarama fit at preschool drop off tomorrow (I'd say the odds are good), and whether he'll like t-ball when he starts next month. 

Why Eli is in the hospital fighting for his life and Bodie is not, I'll never know. Why God chose to let Bodie off the hook with only 6 weeks of iv antibiotics, I'll never know. The bottom line is, we got lucky. 

For now. 

What a horrible thing to be, to feel. 

But it's true. In the CHD world, every hurdle you cross, every surgery you get through, every moment in the land of peace, with your worries abated, is for now. My heart knows that this is just a temporary peace. There will be more surgeries for Bodie. Maybe just "simple" ones like pacemaker battery replacements. Maybe more serious, like valve repairs, and open-heart surgeries. There will be more cardiac catheterizations for Bodie, most likely in the coming months. There will be a heart transplant in Bodie's future. Someday. Unless we get lucky and a better alternative comes along. But that alternative will most definitely include open-heart surgery. Heck, for all we know, Bodie's pacemaker infection is still brewing under the surface. He certainly doesn't seem to be showing any signs of it, but if we know nothing about medically fragile kids, we know this - they can look perfectly healthy and yet be brewing crazy, scary stuff under the surface. So he may be Eli again in the future. That's what makes this journey so tough.

So yeah, tonight, my heart is struggling. We have so many sweet friends heading into their Fontans in the coming months again, as we head into the spring and summer months, otherwise known as "Fontan season" in the heartland. My heart is unsettled for them. And thinking of Bodie's anticipated cath in the near future, and wondering whether his fenestration closure will be successful. And reading of Eli's struggles, today, I say "there but for the grace of God go I." And pray for many, many, many more days spent in His grace, doing His will. 

I don't ever regret choosing this journey. I am 100% confident that this is where God has called Dusk and I, and Bodie and Sierra. This is our mission field. This heartland, replete with sorrow and pain and constant reminders of all of our mortality, our fragility, and our need for a Savior who transcends all that. We know this is where we've been called to be. But some days this mission field is harder than others. For us, there's no escaping it. There is no going home. Our mission field is all around us. It is in us. It's exhausting. Tonight, we ask for prayer. For our family. For our Bodie. 

For Kellen and Ella and Lucas and Zoe and Connor and Cameron and the dozens of other heart buddies who are Fontanning this summer. 

For Evan, who's facing a major heart surgery in 2 short weeks. 

And tonight, most of all, hit your knees for Eli. 

Building our Bucket List

At my MOPS meeting this month, we talked about building blueprints and mission statements for our families. Both great things I'm ruminating on and praying over. We also talked about building a family "bucket list" of things we want our families to do! What a great idea!

Had we done one, our 2013 bucket list likely would have included things like "get through the Fontan" and "graduate from kindergarten," and not the bonus things we actually ended up getting like "an extra heart surgery! Woohoo!," "let's replace both of Daddy's hips" and "robbery resulting in a complete invasion of our privacy and a 6-month battle with the insurance company."

So, we're taking a chance that 2014 will be more mellow and bring better things than 2013. In an ode to that "normalcy," we've created a Bennett family bucket list of things we'd like to do this year.

After a few ideas got the axe ((1) my idea of projecting a movie in our backyard and watching it outside got axed by Daddy probably because he'd be the one to have to get the whole darn thing set up, (2) Daddy's idea of going to Mexico got axed by me because, really, a super complex heart kiddo known to throw crazy stuff at us in Mexico? Um...no thanks and (3) Sierra's idea of no junk food for a week got axed by everyone else because, seriously, how is THAT fun?), we came up with our semi-almost-I-think-we're-close-to-final Bucket list:

1. Have a family game night.

2. Complete the library summer reading program (we've started and stopped it the last 2 summers).

3. Do an intentional service project as a family.

4. Go camping (somewhere other than our backyard).

5. Take the kids to the Long Beach aquarium (Bodie's never been and Sierra hasn't been in years).

6. Take the kids to the California science center (space shuttle, anyone?)

7. Have an electronics free weekend (long overdue)

and finally (the one I am most excited about):

8. Take a family trip to Yosemite!!!

So, there you have it. Our ode to "2014 is going to be a better year than 2013!" Here's hoping that rings true for us! What's on YOUR family bucket list???

P.S. These pictures were all taken by the amazing Brenda Munoz. You can see more at A Doll and a Superhero. Thank you, Brenda!

Goodbye and Good Riddance, 2013...don't let the door hit you on the way out

Man, 2013 was a doozy for us. I don't think we've ever been SO glad to see a year end and move on with hopeful expectation toward a new one. 

But at least we ended it with style...

We had Christmas celebrations galore...

including getting to see Santa not once, but twice - when he came to our neighborhood!

Bodie had his Christmas pageant at school - he did so well. He stood up there, so proud and excited for almost the entire thing. 

I may have shed a tear or two out of such pride for my sweet boy. Or, who knows, perhaps they were tears of gratitude that he wasn't screaming his head off for me the entire time, which is how I had expected it to go down. But whatevs. Let's just call them tears of pride. 

Popo Alan and Grandma Jan came to help for Dusk's surgery - and to spend some time with us! The kids had a blast with them. 

 

And we got to see Popo Bill and Gigi for a Cal Poly vs LMU basketball game

and a quick dinner 2 weeks later!

(yep, I'd say that about sums up life with Bodie!)

Apparently, Sierra just plain grew up in the past month...

(I'm still trying to figure out who this grown up girl is!!!)

She also got to make homemade taffy with Dusk (a wonderful childhood memory of his!)

We had a wonderful visit from our dear friends the Fullers.

And started the year in style with our close friends the Hunts, with a visit to the Santa Monica Pier to celebrate New Year's Day!

 

1/2 a heart and loving riding roller coasters - take that, HLHS!!!

As we usher out the craptastic year that 2013 was and enter 2014 with hopeful anticipation, we covet your prayers that the next year brings more peace, more healing, less hospital time and slower days for our family - and for yours. 

Merry Christmas and Happy New Year from our family to yours!

Blessings abound

First of all, after a seamless surgical recovery, Dusk is HOME a little over 48 hours post-op! AMAZING. Seriously, it was night and day from our last experience, which was actually at the same hospital, but with a different surgeon. We seriously could not recommend Dr. Joel Matta enough - if you are in the unfortunate circumstance of needing your hip replaced, look no further than Dr. Matta at St. John's Hospital in Santa Monica, CA. What a fantastic surgeon with a top notch team. We are incredibly grateful that we opted to use him this time around!!!

And Dusk wasn't the only one who had a great week. Bodie had a visit from a certain special football player, Cole, the football player from Cal Poly who befriended Bodie when he was the honorary captain last month. I do believe Bodie has found a friend for life. 

Thank you Cole and Katie for stopping by to see us! It made our week!

Thank you so much everyone for the prayers! We know it made such a difference in Dusk's recovery. Please keep them coming as he moves into the recovery period!

Surgery is done!

Surgery went well and Dusk is groggy, but comfortable. Praise God! Please pray for good pain management as the anesthesia wears off. Thanks!

Sent from my iPhone

Surgery is underway

Pre-op went great and they just took Dusk back. I have to say, after doing it for the 6th time this year, I'm kind of totally over saying good bye at the OR doors!

Sent from my iPhone

Our Big Guy

I know we usually ask for prayers for our little guy, but tonight, we covet prayers for our big guy - you know, the one trying to tie Bodie's record for the most surgeries this year. 

Tomorrow morning, Dusk goes in for his right hip replacement. In March, he had his left hip replaced. (For those of you who haven't been blog followers for very long, the reason Dusk is having both hips replaced at 40 years old, is that he had a bad reaction from a 7-day course of Prednisone, which caused total Bilateral Avascular Hip Necrosis). 

Anyway, he's super nervous. The last hip replacement was difficult, to put it mildly. The recovery was ardous and excruciating. We would really really really like this recovery to be easier. Please join with us in praying for tomorrow's surgery to go well, for his recovery to be as smooth and pain free as possible, and for daddy to be back home and loving on his biggest fans before he knows it. 

I'll update tomorrow as I'm able. 

Loving some Florida sun

So...I have been meaning to blog about this since we got back a week ago, but life is so unbelievably busy right now! Christmas is a busy season anyway, but add it to how far behind our lives were as a result of Bodie's repeat hospitalizations and Fontan recovery, and all of the sudden I find myself unbelievably, hopelessly behind. At this point, it's not so much things are slipping through the cracks as it is massive sinkholes are opening up and swallowing portions of my life up. Yep, we're still waiting for life to get back to "normal" after this summer.

But I digress. The point of this entry wasn't to complain about the fact that I'm overextended at the moment. It was to talk about the incredible trip the kiddos and I took the week before Thanksgiving. I flew by myself, with the kiddos, to Florida for a week. By myself. Did I mention I went by myself? Yeah, yeah, yeah, I know - lots of parents fly alone with their kids. But they don't have a Bodie. Enough said.

The trip was awesome. The kids loved flying.

Bodie especially loved pushing his own suitcase. 

Which was super cool, considering he had neither the strength nor the stamina to do so. So we spent the better part of our airport time with him lagging behind Sierra and I, pushing his suitcase about 10 feet, watching it fall over, screaming that he couldn't do it, but refusing to allow Sierra or I to help him and slowly pushing it back upright again. And repeating the process. Over and over again. Fun times.

But the vacation itself was awesome. How could it not be? These were our digs. 

Amazeballs, right? 

We flew out there for my cousin Chrissy's wedding. Which was awesome. Except for the part where Bodie was being Bodie and not coming like was told and the bride went to grab him and chase him into the elevator with us. He got caught underfoot, causing her to fall and hit her nose on the elevator frame. Hard. Lots of blood. Lots of bruising. Lots of ice required. Did I mention this was after the rehearsal dinner? As in the night before her wedding? Nice job, Bodie. Thankfully, Chrissy had an incredible make-up artist and you couldn't even tell, but we were so worried!!!

Bodie thought Chrissy's accident looked so cool, he decided to attempt a similar feat. Lollygagging coming off the same elevator the following afternoon, Sierra gave him a helpful assistance push, which caused him to promptly fall over. Onto his forehead. Onto the concrete. 

Less than 24 hours after the bride's fall. True story. Have I mentioned our family has a strong klutz gene? (a week and a half later, by the way, it's still bruised and swollen).

But other than those incidents, the trip was super. In addition to spending LOTS of time with our cousins, Nicole and Michael...

Sierra loved Nicole and got to do lots of girl bonding with her...

While the boys did...boy stuff.

Silly, mischievous boys.

We also got to spend some time with our old friends the Mariniello's

which was amazing, since the last time we saw them (when they moved out of LA), our kiddos looked like this.

The girls were in Heaven together (and I kinda was, too - I adore Hollie)!

We got to spend lots of time with relatives as well. 

Sierra bonded with my Aunt Donna, which I totally understand. I've always thought Aunt Donna was pretty special myself.

And Bodie bonded with my cousin Doug. 

Maybe it was the hammock.

Maybe it was the plethora of animals Doug owns. :-)

 

We finished off the vacation with a trip to Sea World with awesome heart friends, the Sawyers. Sierra and Ellie were fast friends. Oh, those girls LOVED each other. It was so adorable to see them together!

And Bodie was pretty smitten with everything about Sea World. Super cute!

Bodie and Evan, both with HLHS and having had their Fontans this past summer, showing off their amazing warrior marks!

(and, for the record, we didn't make them take their shirts off just for the pic. Bodie, in true Bodie fashion, got a couple of drops of water on his shirt while petting the manta rays, so flipped out and tore it off, insisting on putting a dry shirt on - so Natasha and I took advantage and snapped a cool scar pic.)

All in all, it was a fantastic trip and I am SO glad we made our reservations months ago without even knowing whether Bodie would be well enough to go. What a blessing and answer to pray that he absolutely was! 

When we finally made it home, the kiddos were so excited to see daddy!

And, speaking of this popular guy, we're gearing up for his hip replacement surgery next Wednesday. I'll post more details when we have them, but in the meantime, please be in prayer for a successful surgery with minimal pain and anxiety for daddy. Thank you!