Wednesday, April 30, 2014

No filter

So, I often use filters on my pictures when Bodie is particularly blue. I can usually get the blueness out. But over the past week and a half, he has been so blue that no amount of filtering was working. Key point is this pic, taken last week...
I have been noticing the blueness more and more, and then today, when he gave me this
and this
I decided enough was enough, and sent the pictures over to his cardiologist, who responded right away that while she wasn't necessarily super concerned, if I was concerned, she was concerned and "when can I see him?" (Can we pause for a moment to talk about how awesome she is?)

She squeezed us in this afternoon, where she confirmed that yeah, the kid is freaking bluer than a blueberry right now. His sats were high 60's to low 70's in the office. But his echo looked great (not a heart function or valve issue) and his ekg was normal (not an EAT/rhythm issue). So, where does that leave us? We're not really sure. All that we know is that he's using his fenestration a lot. The question is whether he's using it because he really, truly needs it, or because, well it's there, so why the heck not.

We're still on track for his cath to check things out and hopefully close his fenestration on Tuesday, May 13th. I asked her whether he could wait that long. She replied that, if she didn't think he could wait 2 weeks, she'd want him admitted immediately. And we then watched Bodie run laps around the exam room, and climb up and down on top of the exam table repeatedly, laughing and squealing the whole time. He was happy and had tons of energy.
Obviously not a kid that should be admitted right now.

So, we're status quo for now. Looks like we're just going to have a blueberry until the 13th. Whether we'll have a blueberry after that, or a nice, pink boy, we really don't know. And I'll admit it, I'm pretty flipping nervous about it. His Fontan pressures were higher than I had thought (based on his last cath report, they're still within the normal range, from what I understand, but on the higher end), which could mean he won't tolerate the fenestration closure well. During the cath, they'll check all his pressures, test occlude his fenestration and then check his pressures again. If they don't like his new pressures, they'll hold off closing the fenestration and we'll have to game plan how to get his lungs to relax. We do have some options (maxing out his current pulmonary hypertension med and adding a second one) and of course, 02 is always an option. But we both agreed that we'd prefer to take that off the table as an option if at all possible. Bodie is crazy and never stops moving. The kid won't even tolerate oxygen on while he sleeps - I can't imagine trying to get in on him during the day. He's not such a good candidate for that!

So, tonight, I'm a little more unsettled than I had been, going into this cath. We could definitely use some prayers:

1. That Bodie pinks up a little over the next couple of weeks, with no major issues.
2. That his pressures are better now than they were in October.
3. That he tolerates the fenestration closure well.
4. That he has no other issues during or after the cath.
5. That Amy chills out a little bit (ok, who am I kidding, a lot).

I'll leave you with this little gem tonight. While i was on the computer earlier, Bodie was furiously drawing away. This is what he brought me:
with this explanation - "That's daddy, then Bodie and Sissy, then mommy, then the ladybug - and her EKG."

Wednesday, April 23, 2014

Lucky 7's

Tomorrow, our sweet girl turns 7. Man, it seems impossible that it was really 7 years ago that she came springing into our lives after 27 hours of labor (the last 4 1/2 hours of which were pushing!). 
We had no idea just how much this little peanut would change our lives - how she would just crack our hearts wide open and race in to to fill every bit we never knew had been empty.

We love you so much, Sierra, and couldn't be prouder of you. You've had so much thrown at you the past year, and, through it all, you've shined. You haven't just kept up in life despite some pretty hefty changes and roadblocks, you've charged forward. You've learned and grown so much in the past year. A year ago, you could barely remember how to write your letters, and now you're writing notes and stories - and reading entire books. You are learning in leaps and bounds and have such an excitement for anything new. We have so loved watching you enthusiastically take on ballet, and gymnastics, and swimming, and volleyball and softball. 

Sweetheart, as you're heading into 7, daddy and I want you to know what we admire most about who you are RIGHT NOW. I think what we love the most about you is your sincere interest in others. You always (and I mean, ALWAYS) have to know what everyone is doing at all times. It's such a gift, and one that will serve you well as God nudges you toward those crossing your path who will most need your love and support. In the meantime, let's spend year 7 working on harnessing that gift and knowing when it should and should not (i.e. maybe not every single second of every single minutes of 1st grade!) be used.

And we so admire your willingness to try ANYTHING new and take it on with a smile. That's a gift your mommy has never had - I've never been able to try new things without an inkling of fear unsettling my stomach. I adore watching you jump in with both feet and a huge grin on your face. Please, please, don't ever lose that fearlessness. Let God use that for His purposes. It will take you far.
Happy 7th birthday to the sunshine in our lives. We love you so much and can't wait for many more years to love on you (but can we go somewhere other than Hometown Buffet for next year's Birthday dinner, pretty please?) 

Daddy, Mommy and Bodie

Friday, April 18, 2014

It's all a matter of perspective...

We've had a lot of people lately commenting on how bad our luck is, how we're the modern day Job. And, yeah, it's sort of hard to argue with that in light of recent events.

But, here's the thing. What's that saying, "If you change the way you look at things, the things you look at change?" Yep. I'd say that about covers it.

So, when I look at this picture...

...I don't see two children displaced, the victims of a burglary...and a fire...and serious, life threatening medical issues.

I see two children... a home found by our network of friends...
...watching a movie on a gorgeous tv donated by a member of our old church... an entertainment center left behind by some unbelievably kind landlords...
...on a table donated by one of my oldest friends (who was a bridesmaid in my wedding)...
...on their own chairs that the salvage company was surprisingly able to perfectly salvage...
...eating super yummy Mexican food (oh, how lucky we are to live in Southern California, where Mexican eateries abound).
...and, you know, watching Frozen. Kinda the icing on the happiness cake. 

And...they are happy. And thriving. Loving each other.

And us.

And tonight, we feel lucky. Incredibly blessed to be sharing this moment with our children. 

And, while we're focusing on our blessings, let's take a look at this kid here.
We'll ignore the blue lips and (gulp) sats of 72 at the cardiologist's office this morning, and instead we'll focus on the fact that (i) his echo looked FANTASTIC - his function was great, he has no valve regurgitation, (ii) he looks great and ready for his cath next month, and (iii) this little dude hopped up on  that echo table today, laid right down and totally cooperated for the echo. For the first time ever, I didn't lie down with him for his echo. I kept waiting for him to notice, and to ask me to come up with him. 

But he didn't.

Our baby is growing up. 
I'll say.
Ah, yes. Today we are very blessed.

Like I said, it's all a matter of perspective. 


Saturday, April 12, 2014

Just Keep Swimming...

I have been meaning to write the post for some time, but honestly, life is beyond overwhelming right now. We're definitely burning the candle at both ends around here. Between trying to get caught up at work (for the time missed during Bodie's recent hospitalization followed by the fire), getting both kids to and from their schools, getting ready for Sierra's birthday party, Easter and Spring Break (all crescendo'ing at the same time), getting to Sierra's softball games and practices and Bodie's t-ball games (in a different league and part of town), managing Bodie's double ear infection caused by a cold that hit both kids pretty bad (not to mention his EAT flare-up that resulted), dealing with the restoration companies, meeting with the contractor and engineer we hired to do the house demo and reconstruction, and unpacking as quickly as possible, I find myself falling into bed well past midnight most nights, my to-do list largely untouched. So, if you have emailed, texted or called me, please know I'm not ignoring you - it's just that I am barely keeping my head above water right now. 

I keep reminding myself to just keep swimming...just keep swimming...with the hopes that eventually we'll find ourselves in calmer waters. Because these waters are pretty dang rough for my liking.

On the upside, our rental house is great. It's a bit bigger than our house, and we're thoroughly enjoying the extra space. And it even has a pool and jacuzzi, which is awesome for the summer! The kids are settling in. 

This was them checking out their new room.

I would say that Bodie is settling in more easily than Sierra. In general, as much as he's a complete pain the butt on the every day stuff (putting on underwear, making his bed), he tends to roll with the punches with the big, huge, horrible stuff better than Sierra. Maybe it's his age. Or maybe it's because he's had so much big, huge, horrible stuff outside of his control happen to him in his life that he already knows what box to put it in. He knows to just keep swimming; that this, too, will pass.

Sierra isn't rolling quite as well, though she's trying. We're having some acting out, some difficulty concentrating in school and lots of conversations with her about our old home, why it happened and when we'll get to move back. It's hard. It's hard to explain to a 7-year old why our house burned down, when I don't quite understand it at 37. :-( We could use some prayers for her as she processes it. This will likely frame how she views tough events the rest of her life, so we appreciate prayers for guidance as Dusk and I parent her through this and set her up with a framework for dealing with tragedy. We pray that she would learn to look to God and His strength and promises through tough times. 

Speaking of the house, this is what it's looking like these days. 
This was our dining room and kitchen. It sorta blows your mind how extensive the damage was.

Dusk's dad Alan is a plan checker for the City of Reno, and we were thrilled to have him come out for a couple of days, to walk through the house with us, check out our restoration contract and meet with the contractor. He had lots of great questions and ideas and we were so grateful he was able to come out. 
(Bodie was also super thrilled to get to hang with him and get to see the house. Bodie was most impressed with the open space in the house...and the porta-potty in the front yard. True story.)

The demo has been done and we've discussed rebuild plans with the contractor. A lot of people have asked whether we'll be making upgrades to the house and the answer is, at this point, we don't know. The insurance company will pay for the house to be rebuilt back to what it was (but to current building codes) and will pay for our rent in the rental house in the meantime. That may or may not mean room in the budget for upgrades. For instance, if a wall has to come down anyway, the insurance company has room in the budget for it to be replaced and we don't have to pay out of pocket to have it done differently than it was before. If, however, we want a wall taken down that doesn't need to come down, we're paying for it. And, if our requests delay the project beyond the estimated time to rebuild it back to what it was, then we're on the hook for the additional rental expense. So, for right now, until we have the complete bid, we don't know what upgrades we'll be able to do. But we're hopeful we'll be able to do some. :-)

In the meantime, we want to extend a huge thank-you to those of you who've prayed for us, sent us emails, texts, and called us to check in on us. Please continue to do so. Although it's been 5 weeks since the fire, it's still very fresh to us and, even though we're acting like we have it all together, we still have a lot of pieces to pick up and we continue to appreciate all the offers to help. 

And THANK YOU to Jeff, Mark, Kelly and Malik who helped us pick up and move all the donated furniture into our home last weekend! And thank you to Faith who organized all of the donations- and the amazing people who have donated or lent us dressers, nightstands, lamps, dining room tables, couches, and so much more! You have helped us make our house a home, and for that, we are so incredibly grateful.

Thank you also to Dean (one of the groomsmen in our wedding 11 years ago!) and his sweet 5-year old son, Spencer, who drove all the way up from San Diego today to help replenish our lost Costco items. 
And thank you to my parents, Gigi and Popo, for taking the kids last weekend so that Dusk and I could go to a marriage conference we had registered for last year. it was a wonderful, much needed, weekend for us and the kids had a blast!
And thank you to those of you who have continued to support us either through bringing us meals (if you'd like the link to the meal rotation, please email Amy at or by donating to the Fire Relief Fund (to make a donation, click here. We appreciate it more than we can possibly say. We covet your continued support, love and prayers as we continue to navigate this journey.

And, while you're praying, because our lives aren't crazy enough right now, please keep Bodie in your prayers. He has been scheduled for a cath (to hopefully close his fenestration) a month from tomorrow. Please pray we can keep him healthy between now and then, that we can find someone to watch him the 2 weeks before the cath (since he'll need to be in isolation and out of school to stay healthy for the cath) - and that the cath is SUCCESSFUL in bringing his 02 sats up so that he can breathe easier and not be so darn blue all the time! Please keep our precious little man in your prayers.