Friday, December 13, 2013

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!

Wednesday, December 11, 2013

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

Tuesday, December 10, 2013

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. 

Wednesday, December 4, 2013

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!


Wednesday, November 13, 2013

Mustang Love, Part 2. The Hometown Sweetheart

Months ago, when I was approached about Bodie being the honorary captain of the Mustangs for a game this Fall, my first reaction was to be incredibly humbled. And my second reaction was "what about Sierra?" What an incredible experience for Bodie, to be sure. But so not fair to Sierra for him to get to experience something like that without her getting to be involved somehow. Yes, he is the one who has been through the actual surgeries, the procedures, the hospital stays. But at just 6 1/2, her life, her world has been every bit as much altered by the whole experience. It was important to me that we honor her as well.

I was nervous to ask the question. I didn't want to look greedy, like I was asking for too much, expecting too much. But bless the hearts of Jody Walsh and the entire Cal Poly football community, because they didn't just say "yes," they jumped on board and gave Sierra the most incredible experience all of her own! I had hoped that perhaps she could just meet the cheerleaders, but she not only met them, she got to watch them practice, lead them down the hill, hang out with them both before the game and at 1/2 time, and even do 2 stunts with them! And they gave her her very own Cal Poly pom pons, a special matching bow, a backpack, a Cal Poly shirt and a Cal Poly cheer shirt. She was blown away by how nice everyone was, and I could tell she truly felt like she was the star of the show.

Her experience so far exceeded my expectations when I asked the simple question of whether she could be involved, that I cannot even tell you. 

She was blown away.
I was in tears.
It is one thing for people to give to a sick child. It is another thing entirely for them to give to a child who otherwise looks healthy. 
Thank you, truly, from the bottom of my heart, for involving our sweet girl in such a spectacular way. 

Sierra and the cheerleaders leading the entire march down the hill.
She was SO excited. I love this picture, because you can see her beaming ear to ear and actually lifting her pom pons and cheering. 
 Chatting with a fellow cheerleader. She was SO proud to be there.
 Huddling with the cheerleaders. 
What an incredible moment for the both of us!
The compassion and love shown by the cheerleaders toward Sierra just blew me away. One of the seniors took Sierra under her wing, showing her how to hold the sign just right...
And teaching her a Cal Poly cheer...
Stunting with the entire squad. I don't think Sierra will ever forget that night.
Bodie, Sierra and I, after the game with head football coach Tim Walsh and his amazing wife, Jody, without whom NONE of this would have been possible. 
THANK YOU, Tim and Jody, and the entire Cal Poly football community for making this once in a lifetime experience possible for our family! We are unspeakably grateful!

Monday, November 11, 2013

Mustang Love, Part 1. The Hometown Hero

I'm not even sure where to begin. This past Saturday night, we had the most extraordinary experience. I  am still processing it all. I have way too much to say and way too many pictures to put in one blogpost, so I'm splitting it into two. Part 1 is about Bodie's experience. Part 2 is about Sierra's experience. 

Both were incredible. 
Both are experiences we will never forget. 
Both were only made possible through the generosity of some amazing people. 
We are so incredibly humbled by the love and care expressed by so many on Saturday night. 

So, here goes. 

To begin with, I have to preface this post by saying that Bodie is sick at the moment. He's been battling a fever of unknown origin since Friday night. It has been coming and going and we've been treating it with Motrin for the most part effectively. We almost opted not to go to the game on Saturday night out of fear that it might be too much for his little body. And I have no doubt that other heart moms might have made that decision were they in our shoes. But our approach with Bodie has always been to let him live his life absolutely as much as possible. And this was a once in a lifetime experience. So, when he woke up Saturday afternoon flushed and spiking another fever, we hit him with a dose of Motrin and went on our way. 

The way I look at it, it was just Bodie's way of saying "hey peeps, if you're going to honor me for fighting through so much as a medically fragile kid, I'm going to remind you just how medically fragile I am." Touché Bodie, touché. Point taken. 

Let's just say he may not have been as excited about the plan as we were, initially at least. When we got there, he wouldn't look at anybody or engage in conversation, let alone smile for pictures. He buried his head in my shoulder for the first 20 minutes or so. All I could think was are you kidding me? NO WAY this kid is going to lead an entire football team down the hill. This is NOT going to end well.

But I have to give HUGE props to the Cal Poly football team, who wouldn't give up trying to engage Bodie, as he kept walking away from them saying "Not again!!!" over and over. They brought him arm bands and distracted him enough for me to step away. 

Here, Cole, the slotback and one of the team captains, chased Bodie down as he walked away from him, to give him a little peptalk. 
I don't know what Cole said, but whatever it was, it must have been good. Because IT WORKED. It got our first genuine smile of the afternoon.
And then, he did something amazing, something that will always endear that college football player, and this entire team, to my heart. That big, burly football player took my sweet 3-year old son's tiny little hand in his, and tenderly walked down that hill with him. He probably thought nothing of it, but it was a moment that will stand in my mind forever.
Bodie had the most incredible moment to shine, with onlookers shouting his name and cheering for him. It was probably the slowest that team has ever walked that walk, but I'd like to think it was one of their more memorable walks down that hill.
Here's a little snippet of the walk beginning. I love how you can hear the football players and onlookers calling Bodie's name.
(it's not much, since I was walking backwards around the crowd, making sure Bodie could see me the whole time! But you get the gist.) 

Bodie amazed me with his stamina. After walking probably 3/4 of the way down, he started to slow down and Cole picked him up and put him on his shoulders. 
 When I met Cole at the finish, he handed Bodie to me and Bodie said "that was pretty cool." 

I'll say. 

I may or may not have been in tears watching my tiny little boy leading those big football players down that hill. An absolutely indescribable moment for me, to put it mildly.

Afterwards, we snapped a few family photos (daddy couldn't make it for the weekend, since he had to work, but Gigi and Popo were there)!

Then, we went into the game and Bodie got to walk out onto the field for the coin toss!
(the above picture was taken by Ian Billings and posted by Mustang News)
THIS was shown on the Jumbotron as they introduced Bodie. AMAZING. Again, I may or may not have had tears in my eyes. And Bodie thought it was pretty cool, too. 
 Bodie and I after the coin toss. They let him keep the coin, by the way! How cool is that???
 Bodie with "Musty," the Cal Poly mascot. He loves him some Musty.
Bodie and Sierra with the Coach's wife, Jody. Jody is the one who made ALL of this possible. We are forever grateful for what she did for our family on Saturday night! 
Thank you Jody - you're the BEST!!!

And the best part? Cal Poly kicked some serious tail on Saturday night, beating Sacramento State 42-7! I'd like to think it was a certain little honorary captain that gave them the inspiration to play so well! Bodie's buddy Cole scored 2 touchdowns! Bodie was pretty excited about that. :-)

Stay tuned for Part 2, where you see that Bodie wasn't the only one who had an AMAZING experience on Saturday night!!!

And, while you're waiting, please say a prayer for our little dude, who is now heading into day 4 of this stubborn fever, which doesn't look to be leaving anytime soon. Please pray we figure out what's causing it and can get rid of it for good!