Sunday, February 24, 2013

Let's do this...

I know we usually ask for prayers for the little guy (who thinks he's the big guy) in our household, but this week, the prayer request is actually for the big guy of our household, Dusk.
We knew that 2013 was going to be a big surgery year for our family and it's starting NOW. Dusk is going in for total left hip replacement surgery this Friday (March 1st) at 7am. We'd appreciate all the prayers and good thoughts you can send our way. I don't talk about it much on here, but Dusk has been in excruciating pain for months. The poor guy can't move without being in pain and has been walking with a cane for sometime now. We're READY for the next chapter for him, for his pain to be over and for him to get back to the life he loved, with lots of golf and hiking! But hip replacement surgery is major surgery, with all the attendant risks and benefits. Luckily, we're so jaded after open-heart surgery that it doesn't seem like that big a deal, but truly, it is and we're a little scared, particularly about the immediate post-op recovery period. We're praying for a successful surgery and a quick recovery. Please pray with us! (and if you'd like to help out by bringing a meal during the week following his surgery, we won't complain - my mom will be here helping out next weekend (THANK YOU MOM!), but after that, I'm we're on our own! Please just email me if you'd like to bring us dinner and I'll get the sign-up list out to you!



Saturday, February 23, 2013

King of the Jungle

This weekend, the kids and I took a quick trip up to my parents for a whirlwhind weekend! We so LOVE our trips up to Gigi and Popo's!!! But this trip had an extra special purpose - getting to spread some awareness for Sisters by Heart!

Kelrik Productions, a fantastic local theatre production company based in San Luis Obispo, is currently showing "Tarzan" and honoring Sisters by Heart in the process!!!  A huge thank you to my fellow Sisters by Heart Board member and friend Melissa - Kelrick does this because of Melissa and her daughter Ella! After the show, running Saturday and Sunday afternoons through March 10, the actors talk about Sisters by Heart and what we do, and accept donations on our behalf! It's a part of their nonprofit, Kelrik Cares, which gives back to the community! How cool is that?!? So, today, I had an opportunity to see the show (oh my, can you say so FUN and entertaining?!?) and speak a little bit about SBH afterwards. Apparently Bodie was so impressed by my speech that he walked off stage halfway through my spiel.  True story.

But it's ok, we still had fun!

Melissa and Ella, Bodie and I behind our table. How great did it look? Sherri of Kelrik Productions, did such a great job!
The kiddos and I by the Tarzan sign. 
I'll be honest, I didn't take them to the show - Bodie would have been such a nightmare at the show. But they did catch the last few minutes of it and were totally enthralled!!! 

Local peeps, if you have not yet seen it, do yourself a favor, run, don't walk, yourself over to Kelrik's website (click here) and get all the info you need to SEE THE SHOW!!! (and, ok, maybe make a donation in Bodie's honor while you're there! Thank you Kelrik Productions SO MUCH!) 

After some time with Tarzan, my parents and the kids and I headed to Cal Poly for a basketball game. We so love this tradition!
Have I mentioned how much I LOVE my kiddos?
And the kiddos favorites...
...kettle corn with Popo...
...time spent with the Cal Poly cheerleaders...
...being put in a basketball net...yep, it really happened...
and MUSTY!!! 
 "Mommy? My favorite people in the whole world are you, Minnie (mouse) and Musty." - Bodie.

And that folks, about sums up our weekend! Thanks again, Popo and Gigi for another awesome weekend! We love you!!!

Wednesday, February 20, 2013

Happy Birthday, Birthday Boy

I cannot believe our sweet, crazy, nutso boy is really 3!!! It really just seems unreal to me. What a milestone for our little man. 

We celebrated with a party this past weekend and boy did Bodie have fun! I have to say, it was not my most creative all out birthday bash I've ever done, but, after the week we had, the fact that we had a party at all was kind of a big feat. :-) I was actually going to say the fact that we all showed up, fully dressed and with teeth brushed was a big feat...but, well, given that Bodie was literally running down the street with nothing but a tee shirt on, chasing a ball, when the first guest arrived, that statement would only be half true...)

And, speaking of that first lucky guest, I have to give a HUGE shout out to the incomparable Brenda Munoz, who did all of our photography you see here of the party (and who, you know, didn't turn around and get back in her car and drive away upon arriving to see the guest of honor streaking down the street). She's so awesome that we'd have invited her anyway as a guest, but we got extra lucky to benefit from her mad photog skills while we were at it! Local So Cal peeps, if you're looking for a phenomenal photographer for a special event, or even just amazing family photos, we cannot recommend her highly enough - check out her website at

Anyway, streaking and photography props aside, we went pretty low key on decorations - not intentionally, but given that somehow all 3 of our local grocery stores, Party City and the 99 cent store were either out of balloons, helium (apparently, there is a nationwide shortage - who knew?) or anyone who could actually figure out what the term "balloons filled with helium" meant, we ended up having to go sans balloons. So, the decorations ended up being just tableware and veggies. Perfectly fitting for our veggie and VeggieTales obsessed little man.
The lack of balloons definitely made for a pretty sad Bodie, but once he saw his first gift, he forgot all about it.Man, this kid was INTO gifts this year. 
We thought it was so cute how excited he was to see the first guest - until we realized that it was ONLY because he was excited about the present in their hand! He tore it out of their hands before they were even over the threshold and ripped it open immediately. know this OCD mom immediately put a stop to that, putting all remaining gifts well out of reach until gift opening time!
Although we skimped on decorations, I did my best on the favors and cake. 
The favors were filled with Veggie Tales Silly Bands, Veggie Tales character stickers and "Veggie candy mix" 
Yellow Lemon Heads were "corn," Cherry sours were "tomatoes," Orange jelly bellies were "carrots," Green runts were "peas," Sour apple sticks were "celery," and green licorice was "asparagus. :-)

And the cake - it looked sort of like Bob and Larry from VeggieTales.
Luckily, Bodie was a much easier audience to please and literally squealed with delight when he saw Bob, Larry and the minion of French peas, all of which had different expressions. 

We thought it was a great idea to put him on the table to take a pic with his cake.  
So did he. He literally was beside himself with excitement trying to touch it. It was hilarious.
As an aside, I totally didn't realize how filthy his feet were until I saw the pics afterwards of his feet, you know, inches from the food. Mom fail moment for sure.

We got a good family shot though, which was awesome.
And yes, Sierra is wearing last year (as in, 2011)'s Christmas dress, with crazy pink tights and a turquoise bow in her hair. Didn't say I was proud of it. Whatev. I got bigger fish to fry these days. Again, we're all wearing underwear, so hey, it was a successful picture. :-)

And, one of my favorite moments - we got a pic of all of the heart kiddos there (and there would have been more if our buddies Ella and Michael didn't have to bail at the last minute for illness - gotta love cold and flu season!) - Bodie, Townes, Grace, Barbara and Lucas. Townes, Grace and Lucas all have HLHS like Bodie, and Grace is heading into her Fontan this summer as well! Barbara was one of Bodie's first roommates after his Norwood and we take such joy in hitting up each other's birthday parties each year. :-)
There are just SO MANY THINGS I love about this picture. How about, for starters, the fact that these kids have had 14 open-heart surgeries among them? Or that they live totally typical lives now? Or that Bodie is holding a basketball, pointing out something to his buddy Townes, just like typical kids. Ah, how this pic gets me all misty eyed. You are amazing, Brenda. THANK YOU for capturing this moment!
Happy Birthday, little man. We are SO unbelievably proud of you. Setting aside your distaste for underwear and apparent inability to figure out how to put them on yourself (seriously, asking you to put on underwear is NOT the equivalent of asking you to figure out world peace), you're really turning into the most incredible little dude. You are SO funny and silly (one of Sierra's best friends was over last week and was with you for a bit while Sierra was in time out and all she could say to me was "Um, Sierra's mommy? Bodie is REALLY funny!") Seriously, dude, you are. You have a magnetic personality and people are just drawn to you. You make all of this, everything it takes to love you and to live in this scary, uncertain CHD world, 100,000,000% WORTH IT...and then some.  Your love for Jesus absolutely astounds us and every time you talk about Jesus or Heaven out of the blue we are reminded again how God is already using you to change people's lives, which has always been our greatest prayer for you. 

We are so so lucky to be your parents, Bodie. We are so scared for the year ahead, but so excited at the possibilities that lie ahead for you. WE LOVE YOU. Happy Birthday to the bravest little dude we know. Thanks for continuing to inspire us every day.

Friday, February 15, 2013

The moments you dream of...

When you are told, at 17 weeks pregnant, that you child will face multiple massive open-heart surgeries, may very likely have cognitive delays and that the first year will be a roller coaster, you look only at the moment you live in. You don't look ahead to more than that moment. You focus. You pray. You breathe. Because, really, looking any further out is too painful. 

When Bodie was diagnosed, when he was born, and for probably the first year or so of his life, I didn't look ahead. I didn't have a baby shower for him before he arrived, and once he arrived, I didn't buy clothes bigger than the size he was currently in, I didn't say "when he is" or "when he does" this or that; it was always "if." I am an optimistic person by nature and always knew I'd fight for my son and always hoped he'd be one of the ones who did well. But I never imagined him growing up, going to school, having a future. I didn't intentionally think it wouldn't happen - I just didn't go there. I never dared to dream of a future. 

I never dared to hope for a day like today. 

What blessings. Praise God for this day.

Thursday, February 14, 2013

I'm ok, you're ok...

If you're Facebook friends with me, or a relative of ours, you probably heard that we were robbed earlier this week. Our (extra thick double planed plate glass) bedroom window was broken and our bedroom was ransacked while Dusk and I were at work and the kids were at school. They stole my jewelry box (which really didn't contain much of monetary value (I'm sure they were super bummed when they tried to pawn it only to discover that most of it was purchased at Claire's! That's karma for you!), but definitely a LOT of sentimental stuff (including Dusk's late mom's jewelry) and Dusk's work laptop; and they took our safe, which was bolted to the wall. They literally tore the safe right out of the wall, leaving holes behind. The icing on the cake was when we went to sleep that night and discovered our pillow cases were missing, clearly used to carry our stuff out with. As our friend Matt so perfectly put it when we really needed a dose of humor "what kind of broke thieves don't even have their own thief bags???"

Nothing else in the house was touched, including my laptop which was in plain view on the dining room table, which leads us to believe that they were probably still here when the kids and I got home and we unknowingly scared them off. (When the kids and I got home, we were in the front of the house for probably 10 or 15 minutes before I went back to our bedroom to grab something, which is when I realized what had happened). TERRIFYING for me to think what would have happened if we had come in when they were, say, in the front of the house. Jesus was watching over us for sure.

We are obviously completely unsettled by the entire experience and poor Sierra is probably the most traumatized, poor baby. I am BEYOND grateful that God was watching out for us and we didn't actually see anyone in the house, no one was hurt, they didn't touch the kids' room, etc. But the experience of knowing someone broke into your house and went through your belongings is am unsettling one. We covet your prayers as we settle into the aftermath of an event like this, of our security being compromised, our safe place not feeling quite so safe. Bodie's fine and doesn't seem affected by the whole thing, thankfully. I know Sierra will be fine (Dusk and I are fine - I mean, I have PTSD from it, but c'mon, at this point, I'm really just throwing it onto the crapload of PTSD I'm already carrying from the last 3 years, so really, what's a little more?), but we appreciate your prayers to get Sierra through this.

The silver lining (if you've been reading my blog for any period of time, you know I'm the kinda girl who is squinting her eyes through the thunderstorm trying desperately to find the silver lining) is that it's given us a LOT of opportunities to talk to the kids the past few days about how unimportant "stuff" is, how this was annoying, and frightening and yes, we're allowed to be angry about it. But, at the end of the day, it's just stuff. If money can fix it, it's really not that big a deal. And our "security" doesn't ever come from things in this world anyway, but in the security that only Jesus can provide. 

We're ok. The kids are ok. The rest is just details. 
And today, on Valentine's Day, that's a lesson I'm totally ok fully embracing. And, to be honest, one of my goals this year was to declutter and live a little more simply. But, I was sort of envisioning being allowed to be an active participant in the process of deciding what we were getting rid of! 

Saturday, February 9, 2013

My Heart Beats Red for Bodie 2013

Overwhelmed. There's not really any other way of putting it. Thank you. Thank you. Thank you. From the bottom of our hearts. Please take a moment to watch this and get a glimpse into how grateful we are and how surrounded by love we feel right now. THANK YOU for loving our son this much.
You can also access the video here.

Thursday, February 7, 2013

Our Dream Team

When I was at the conference in Cincinnati 2 weeks ago, an amazing doctor there, Steven R. Neish, M.D., S.M., remarked that "Congenital Heart Disease is a Team Sport." Wow. What a great statement. And today, it was never more clear to me than in this moment...
Bodie is holding up his official report from LAUSD (received at our IEP meeting today), where it says he is "Not Eligible for Special Ed Services." Why not? Because he is testing at or above age level in every single area. In cognitive abilities and receptive communication, in fact, he tested mostly in the 4-5 year old range. 

Let me be clear - I have NO problem with Special Ed Services. Bodie received Occupational Therapy for about 6 months, has received Physical Therapy since he was 9 months old and the TWISPP program he has been in since 18 months old is essentially a developmental preschool; all approved and paid for by the State. And he may need services in the future. So I have no issues whatsoever with special educational or developmental services. 

But the fact that Bodie doesn't qualify for services because he has completely caught up absolutely blows me away. This kid has been through 3 open-heart surgeries, 2 cardiac catheterizations, multiple intubations, 5 months of ICU hospital stays, 2 cardiac arrests, and 2 runs on bypass, not to mention that his brain has been receiving approximately 75%-85% of the oxygen it has needed since birth. Any one of these factors alone puts him at risk for developmental delays, but all of them together should put him at an unreal amount of delays. And yet he's not delayed. At all. (Apparently his "mild core weakness" is no longer considered a "delay" - good thing, since I'm pretty sure that after 3 pregnancies and a c-section I, too, have "mild core weakness"!)

People often say to me what a great job I've done with Bodie. But he's not where he's at because of me. Not even close. He's where he's at because of an incredible team of doctors, nurses, therapists, teachers, friends and family who have ALL invested in and loved this kid. On today, February 7, the first day of Congenital Heart Defect Awareness Week, I want to thank a few members of that team.

God, the ultimate healer, who continues to protect Bodie's heart and mind and guide our journey.

Dr. Starnes, Bodie's surgeon, who is known for having some of the shortest bypass times and best surgical skills around.

Dr. Kim, Bodie's amazing cardiologist, who has always known when to push Bodie and when to respect his limits, and who has always made it her goal that Bodie's CHD wouldn't define his life.

Dr. Hassouri, Bodie's pediatrician (who was actually his 2nd pediatrician, after we ditched the 1st one who took one look at Bodie as a fragile 2 month old and clearly couldn't see our son past the oxygen attached to him), who has NEVER been afraid to treat him like a typical little boy. 

Dr. Moromisato, head of the CHLA CTICU, who runs one of the best, most family-centered-care run cardiac ICU's in the country, who always got Bodie at his worst, and took care of him wisely and compassionately until he recovered. 

Dr. Rivero, the attending doctor who, after Bodie had already had 2 cardiac arrests in one day, came up with a Hail Mary idea to pace him that saved his life with moments to spare. 

Dr. Bar Cohen, Bodie's brilliant Electrophysiologist, who has never given up trying to figure out the rhythm conundrum that is Bodie, even when no else could, who made the recommendation of giving Bodie a pacemaker that improved his quality of life in ways we cannot even express.

Nurse Nicki, who empowered me as a parent to know how to recognize that my son was on the brink of death and that I could call the Rapid Response Team that saved his life.

Nutritionist Emily, who figured out how to get enough weight on our scrawny little guy's bones so that he was eligible for his Glenn surgery, finally able to get on the growth charts at 8 months old, and now be at the 75% for weight and height. Emily made sure he didn't have just enough fat to survive, but some extra for his brain to grow as well. 

The entire CHLA CTICU and CV Acute Teams, who didn't just heal our son's heart, but saved his spirit in the process, and allowed our family to be an integral player in that process.

Physical Therapist Tam, who has patiently invested countless hours to help Bodie overcome his gross motor weaknesses.

Teachers Adam, Jason, Chelsea, Kathy and the entire team at TWISPP, which is the most incredible Development Preschool on the planet, who have given Bodie confidence and the ability to push himself. This team has lovingly prepared him (and me!) for his transition to preschool.

Our family - Gigi Nancy, who spent countless hours alongside me in the hospital during Bodie's interstage admissions, making sure I stayed sane so that I could be there for my son, so that I could help his life be as normal as possible despite the completely abnormal situation we were in. Popo Bill, Gram Jan and Popo Alan, who don't give a second thought to Bodie's heart condition when they come visit, who throw him in the air, and raise him over their heads, and take him on bike rides, wagon rides and car rides. Thanks to them, Bodie lives a completely typical life. 

This team that Dusk, Sierra and I are a part of is exactly that, our "dream team," the team that is helping us achieve our dreams for our son. Every single member listed above has played an integral role in bringing us to this moment. I thank God every day that we have a team that works well together, that puts Bodie's interest first, and who all has the same goal in mind - not just to help our son survive, but to thrive

We know this battle is far from over, that Congenital Heart Disease is a lifelong battle. We don't know what this summer will bring, how tough that match will be, whether Bodie will come out as victorious as he is today. 

But today, this day, we won the match. No question. So today, we celebrate the win. 
And we High Five our Dream Team for letting us play alongside them.

Tuesday, February 5, 2013

Somewhere Over the Rainbow

So, there's this little video that's been going around Facebook like wildfire. It's a pretty awesome video, it's brought to you by the incredible Life of Dad team (haven't heard of Life of Dad? You're missing out - check them out here!). So, this video - it's cool. And it's all about CHD awareness. EXTRA cool. Oh, and you know, there's a certain adorable little blonde dude and his awesome dad in it. Check it out - and PLEASE pass it along. Spread the word. Help us bring CHD awareness to a whole new level!
(If you're having trouble accessing the video, you can find it here).

Happy almost CHD awareness week (and if you still have pics of you wearing red for Bodie, please send them to me - I'll be drafting the post later this week)!!!