Saturday, May 31, 2014

California lovin'

Today, the kids and I went to the annual California Heart Connection picnic. We missed it Bodie's first year, since he was still in the hospital, but have been every year since. It is one of our favorite events. There's nothing quite like seeing a bunch of heart kids running around and loving life. As I get further connected to the heart community, the picnic gets more fun each year, as I end up seeing so many people I know.

This year, I don't think we made it 5 minutes in before I had already hugged 4 different people I knew and waved to a handful more.

But I will say that Bodie seriously cramped my social style, since I couldn't talk to anyone for more than about 30 seconds before I'd have to chase him down again. I knew the picnic was going to be different this year with Bodie finally being post-Fontan and satting well. But I had no idea how different. This kid is crazy. I swear, he's like that dog in "Funny Farm" that runs away and they show periodically throughout the movie still running. He's like that. He NEVER stops. I was literally chasing him all over the place and having to run to the far parts of the park to gather him back up and ask him to at least stay where I could see him. That's what a little oxygen will do for ya!

Thankfully, for the last hour or so of the picnic, the kids settled into the park area, and those of us moms and dads that were still there just got to relax and chat. It was amazing to have that time. 

Among the special friends we got to hang with today were this little one right here, Zoe, and her mom and dad.
How adorable is she??? She has HLHS like Bodie, and is also a CHLA kiddo. I adore her mom and spend lots of time emailing and texting her, but it had been a couple of years since we'd actually seen each other - and even longer since the kiddos had seen each other! Today was AWESOME watching them hang together - and maybe even cuter was seeing Sierra leading Zoe around by the hand and playing with her. Zoe is Fontanning in July - please keep this cutie in your prayers.

This is Trevor, who is a Rady's kiddo and is post-Fontan as well. 
Trevor is the coolest little dude and always has such a great and happy disposition, and one of the greatest moms around. Today, Bodie, Trevor and another little guy, Tanner, were running around and playing nonstop on the playground, playing all sorts of pretend games together. Although adults generally seem to find Bodie super cute and funny, he doesn't always play that well with kids his own age. Not sure why - probably just because he's been through so much and doesn't know how to relate. I hate to say my kid is the weird one, but yeah, sometimes he is with kids his own age. But to see him playing with those 2 kiddos today, like a typical kid, and totally able to keep up with them, was so good for my heart. I literally could have cried. 

Bodie and his Jeni, our amazing adult HLHS survivor.
We love Jeni. Enough said. Oh, and that she's coming up on a pretty big pacemaker surgery in June. Please pray that it goes successfully.

A small contingent of our LA Heart Moms. 
I love these mamas and love getting together with them!

You know, some days are tough, being a part of the heart community. There's a lot of loss. There's a lot of fear. A lot of reminders that our battle with CHD will never be over. 

But days like today make it so worth it. 

Days like today make me SO blessed and humbled to be a part of such an incredible community.

Letting loose.
Loving life.
Celebrating what CHD has brought into our lives.


Tuesday, May 13, 2014


This little dude is home. He's a little tired, a lot puffy (typical for him, post cath) and surprisingly angry he didn't "get" to stay overnight in the hospital. But, he's pink and he's home! And we're all going to bed - for perhaps the first good night of sleep since the Fontan.

Pink is the new black

Bodie's fenestration was successfully closed and he is now back in recovery! He is satting comfortably in the mid 90s and, for the first time in his life, is unbelievably and beautifully PINK!

Cath is underway

After a fun morning (seriously, this kid is such a ray of sunshine even amidst the scariest situations - we are so blessed) and a healthy dose of Versed that sent him back to the cath lab giggling and smiling, Bodie is officially in the cath lab now. Please pray for a successful procedure!

Will update as we know more.

Monday, May 12, 2014

A Cathing we will go

This kid? 
He is SO ready for tomorrow. He's woken up every day for the past week, excitedly asking "is TODAY the day I get to have my cath???" and then being disappointed as I counted off the days remaining. On the list of reasons he is MOST excited about the cath are: (1) getting to leave "in the middle of the night" (i.e. 5:15am); (2) getting to stay overnight; and (3) getting to watch the vacuum tube system (for transferring meds and notes from the pharmacy and nurses' stations to each other). 

So yeah, this is kid is so excited he can hardly contain himself.

And sissie is super excited to get to spend some extra time with her bestie while mommy and daddy are at the hospital with Bodie.
Me? Not so much. 
More like petrified. 
So much is riding on his cath. It has the potential to really make this Fontan physiology work well for Bodie. But it is just so.stinking.scary handing your precious child over to be put under anesthesia, with all of its attendant risks, for a procedure that may or may not work. I can usually more or less hold my cool through all of Bodie's heart stuff, but I'm not gonna lie - my stomach has pretty much been in my throat for the past few days. 

Please keep our boy in your prayers. We have to be at the hospital at 6am, so start those prayers early!
1. Pray that he tolerates the sedation well.
2. Pray that he has NO complications.
3. Pray that his pressures are low enough to test occlude his fenestration.
4. Pray that they are able to successfully close his fenestration.
5. Pray for an uneventful recovery.
6. Pray for peace for Dusk and I throughout the next couple of days, but especially when Bodie is in the cath lab. Those hours are always really nervewracking.

Just pray, please. We know that God is in control, but our nerves are still pretty frayed. 

I know you all follow him and love him, but...this little sunshine right here is our baby and we're scared. This CHD journey is no joke, folks.
We covet your prayers heading into tomorrow. 

Thursday, May 8, 2014

Right time, right place

This week has been hard, on a lot of levels. The days leading up to any procedure are always stressful, and next week's cardiac catheterization is no exception. So many questions, lots of thoughts racing about the long-term effects on Bodie's liver if they are able to close the fenestration - and the short-term effects on the rest of his body if they are not able to close it. And the worries of putting a kid with a half of heart under anesthesia for any length of time. 

So emotions are already running high. 

On Tuesday, we got the long awaited (and fought for) results of Dusk's genetic testing done back in December. More on that later (it's a lot to take in and we're still processing the implications of it for not just Dusk, but possibly Bodie and Sierra as well), but suffice it to say, it's amped up the stress level a bit. Add to that Sierra's 3 tests and a school project due this week, and let's just say, it hasn't been pretty around here.

So the timing was pretty incredible today to be receiving a package from Icing Smiles. Icing Smiles is the organization that provided both kids' birthday cakes the year Bodie turned 1, and Bodie's incredible Minion cake earlier this year. I knew they occasionally send treats to their recipients, but we'd never received one. Until now.

In the package was this box.

And inside was this note.

Along with a dozen of the most adorable Minion cookies I have ever seen.

Bodie was thrilled.

I cried. 

Actually, I kinda cried buckets. Right there on the kitchen floor.  Bodie looked at me in confusion, saying "Are you crying mama? Why? It's ok - I'll share them with you!" and handing me a cookie.

Have I mentioned how much I love this kid?

But seriously. How incredible for someone who's never even met our family, or our son, to reach out like this? To feel the calling on their heart to reach out to our family and send the most incredible gift at this exact moment in time? I mean, the timing was absolutely perfect. Between the fire, Bodie's upcoming cath and the genetic results, we were desperately in need of some loving right about now. Clearly this package and its timing was God orchestrated. That package had time to get sent to our old house and then get rerouted to our new house to arrive on the most perfect day. 

I know, I know - it was just cookies. Big deal. But it IS a big deal. And we are profoundly grateful. 

Right place, right time. 

Thank you so much to Icing Smiles, Mike, Annika, Elissa, Hannah and Audrey for being our right time and right place today.

Sunday, May 4, 2014

The aftermath

So, I am great at pushing on through trials and tribulations, acting like everything is normal. I mean, we're talking I am super at it. As in, if they gave an Olympic Medal for "biggest faker and best at acting like everything is totally fine when it's not even close to totally fine" I would so be up on that podium, singing my national anthem and basking in all my glory. Yup, that's me.

My "everything has to continue on like our lives didn't just bottom out underneath us" attitude has been in overdrive, since the fire, really. It's the same attitude, by the way, that drove me, the night of the fire, to search through the kids waterlogged, ash filled and ruined bedroom for 45 minutes to find Bodie's missing t-ball cleat because "he has his first t-ball game tomorrow and he's NOT missing it." True story. In my quest for life to continue on as normally as possible, I wasn't even giving us a chance to acknowledge that our lives were not going to be normal again for a very long time. And that it was ok. It was not making excuses.  

Anyway, I digress. This trait of mine, it's kept us at this full throttle speed toward keeping up a sense of "normalcy" for us, without acknowledging that a slower pace would be totally acceptable right now. So, the kids are at their t-ball and softball games, we're at church on Sundays, we're having birthday parties and making summer plans. You know, just like everything is normal

So, I shouldn't have been surprised when my mom was in town last weekend and casually asked why people were still bringing us meals when really, we have this amazingly beautiful, working kitchen now.
(and it's totally a legit question. I mean, really, it's beautiful, right?) 

But, I gotta say, our lives still aren't normal. There is so much aftermath to a fire that you don't even think about.

Like the fact that I only last week got my printer back. Having a home printer isn't a big deal - unless you work from home - and you're used to having it. Everything requiring a printer kind of slid to the back of my (already overflowing) plate. SO glad to have my printer, but I have SO much to do now!

Or the fact that we have random bugs around here (pincher bugs, a cockroach or two, lots o' spiders, etc.). And we have Terminix on it. But because we didn't plan this move and all of our stuff was put in boxes, moved to a warehouse with other people's stuff in boxes and then brought into this house, we don't know - did we bring the bugs somehow from our house? Were they already here? Did we pick them up in the warehouse? Is it just an isolated thing or are we about to be facing an invasion of bugs? FUN stuff! 

Or the fact that we put in a permanent change of address with the post office (because you have to specify an end date for a temporary hold and we don't have a specific end date yet), figuring they'll forward for up to a year, so we're good and don't have to actually switch our address with anyone....except that the post office, unbenownst to us, sent out change of address notifications to some (but not all!) of the people sending us mail. And we get to guess who got the notifications! SUPER awesome. Can we pause for a moment and send good thoughts and prayers that the DMV is not on the list of the lucky recipients?

And speaking of not having an end date, they haven't started reconstruction of the house yet. Actually, they haven't even pulled the permits yet. They're close, from what we hear. But, even so, LA County is looking at 8-12 weeks for permit review. And then they can start reconstruction, which should be 6-8 months.

And what about pictures? Do we bother putting up pictures in a house we're moving out of maybe 10 months from now? We want it homey, but, really, who wants to be trying to fill nail holes when we're moving back into our old house at the same time?

Or my favorite. The kids' bunk beds. One of the very few items the salvage company is attempting to salvage. We just got it back on Thursday. SO exciting! But, we had to replace all of our mattresses, including the kids. Which was fine. Except...
We didn't have the bunk bed when we ordered our mattresses, so ended up with mattresses a bit higher than even the railing on the bunk bed. It's like a perfect launch pad to send Sierra hurtling to the floor (you know, if she can make it past the ceiling fan first). Super safe, right? Who would have thought we'd end up with THAT problem?

So, Dusk went right to work trying to create a solution...
Oh, and by the way, see that boot on his right foot? Yeah, he broke it a couple of weeks ago. We found out by having x-rays done at the chiropractor I've been seeing. Turns out my lower back is badly compressed and I've started spinal decompression. Fun times.

Our lives are kind of a hot mess right now, no pun intended. Anyone who knows us knows that we were already at our max prior to the fire, and didn't exactly have any margin left for major, life changing events. (I've never had much margin (you know, extra s in your life?) - I'm not sure I would know what margin was if it slapped me in the face.)

And the aftermath of a fire is just plain huge. It affects everything. Our local pet store caught fire last week. Everytime I drive past the boarded windows, I draw in my breath, reliving that moment of watching my home on fire, the flames driving up into the sky. That feeling of utter helplessness. That moment changes you forever. And the days afterward, sifting through the rubble that was your life before. I know a fire of a business is different than a home, but even so, my heart goes out to the owners and the employees as they embark on the rebuilding journey.

We're a little further along the journey and working through it. And we'll be fine. We'll keep trucking on, because, at the end of the day, this is just life and that's what we do. But, yeah, people are still bringing us dinner (through tomorrow) - and we're pretty darn grateful. Because it allows me to focus my attention on, you know, more important things like acting like everything is totally normal in our lives. ;-)