Sunday, August 28, 2011

Beads of Courage

This week, Sisters by Heart profiled our family's experience with Beads of Courage, an incredible program that reaches out to families of chronically ill children. You can find out more about the program and Sisters by Heart (and MAKE A DONATION (yes, hint, hint!) here. I am also including a copy of the blogpost below...we're so grateful to Sisters by Heart and all of the organizations who reach out our special little bravehearts!
Last week, we introduced you to our Top 10 list of Kindred Hearts - organizations that love and support our HLHS warriors and their families. This week, we're focusing on one of those organizations, Beads of Courage.
Beads of Courage Beads is a 501(c) 3 tax-exempt organization dedicated to helping children with serious illness record, tell and own their stories of survival. Since March 2005, Beads of Courage has diligently transformed the treatment experience for children coping with chronic, life threatening illness through their arts-in-medicine programs.

Beads of Courage helps you to tally the number of different procedures and surgeries your child has experienced and will send you a corresponding bead for each individual procedure, along with a lanyard personalized with your child's name. For instance, the bead representing heart surgery is a white square bead with a red heart on it. My son's necklace has 3 of those. The bead representing echocardiograms (my personal favorite - the bead, not the procedure) is a glow in the dark sphere. My son's necklace has 36 of those.

There are a number of hospitals who participate in the program and will help tally your beads for you, but my son's hospital did not, so I didn't enroll my son and start tallying his beads until he was 17 months old, almost a year past his Glenn. I tallied the number of surgeries and procedures he has had on the special tally sheet they sent me and emailed my totals to a Beads of Courage representative. Then I excitedly waited for them to arrive. When they did, my 4 1/2 year old heart-healthy daughter and I immediately began stringing them together...all 677 of them.

If I thought tallying them was emotional, stringing them together was even moreso. I expected to be impressed by the end result, and I was.
But this was just the first string. It was quickly followed by 4 more.
My son's 5 necklaces represent 2 cardiac catheterizations, 9 central line and PICC placement & removals, 6 clinic visits, 94 nights spent in the CardioThorasic ICU, 15 days spent on TPN, 25 dressing changes, 36 echocardiograms, 2 emergency/unusual occurences, 5 antibiotic infusions, 43 nights spent in the step-down unit, 75 days spent in isolation, 4 different instances of learning new medications, 135 IV Starts and blood draws, 150 CT scans, EKGs, MRIs & X-rays, 5 tranfusions, 22 NG, chest tube & foley catheter insertions and removals, 21 days spent on a ventilator, 50 visits from PT/OT/Nutrition, 3 extraordinary experiences, 3 cardiac surgeries and 5 hospital discharges. Pretty amazing for an 18 month old. And Beads of Courage found a way to represent all of that in 5 beautiful necklaces. What a wonderful organization!

After helping me with my son's necklaces, my daughter really wanted her own. I felt so bad having to tell her no, that they were only for children who had been sick in the hospital (healthy siblings tend to hear that kind of thing a lot and I felt bad having to tell her again). Then I learned from my amazing Beads of Courage representative that they have a new sibling program as well! It's on a smaller scale (only 25 beads), and there is a small fee, but she would get a lanyard with her name just like her brother's, the beads would each hold a special meaning and she would receive a card explaining the meaning of each bead. I couldn't sign up fast enough!

Her package arrived today and she immediately tore it open. I was completely impressed by what we found inside. The package included the promised lanyard with her name on it...
and the cards explaining each special  bead...
She immediately strung them all and couldn't have been more excited! Clearly, my daughter is a fan of Beads of Courage.
So am I. Thank you, Beads of Courage, for your thoughtful support of our special warriors and everything they've been through!


Wednesday, August 24, 2011

The world is his Everest

"He won't stop climbing" I chuckled to our dear friend Colleen earlier today, as we watched him climb on and off her sweet black cat over and over again.

"But...he won't stop climbing" I whimpered to my husband when he walked in the door tonight, as he turned to see him standing on the kids' picnic table.

"No seriously...he WON'T stop climbing" I cried to my mom tonight as I watched him try to launch himself from the rocking chair into his crib for the hundredth time.

I am not exaggerating folks. Bodie has apparently decided he is in training for the next hike up Everest because he will.not.stop.climbing. And everything he climbs is dangerous to dangerous to anyone standing nearby. A heart attack a minute for mama!

On the couch...
Over the couch (which he successfully launched himself completely over last week) - and I do have to give him bonus points for flair - do you see that pointed toe?...
On the ottoman...
On the rocking chair...
Apparently no one told HIM he had a half a heart and shouldn't be able to climb. Some days I think it'd be ok if he knew. Today was one of those days. :-)

Tuesday, August 16, 2011

Happy 18 Months!!!

Oh WOW. Our sweet boy is 18 months!!! What a blessing and a miracle.
At 18 months, sweet Bodie, you are a handful. You are absolutely all boy. I cannot tell you how many times a day I am told by complete strangers how I must be tired from chasing you around. Your Gigi Nancy used to describe your Uncle Matt as being "in a perpetual state of motion." I never understood that saying until you came along, but it describes you perfectly. I also never understood how she used to say she had always wanted more kids, but had her hands too full with Uncle Matt (sweet, but BUSY!!!) and me. Now, sweetheart, I get it. We often say you're lucky you were a second, or you'd have been an only. ;-) A lady in the elevator yesterday told me "he is so beautiful, you should get him an agent!" (gotta love LA, right?) I couldn't help but laugh. Bodie, sweetheart, you might be cute, but you're just a tad bit resistant to anything that was not originally your idea. ;-)

You are always moving. And it's not just that your body must be moving, though that's part of it - but if anything around you can be moved, it must be moved. I think maybe you'll be an interior decorator someday, because you are constantly rearranging our furniture. It cracks me up to look at you, this tiny little guy, moving huge chairs and boxes around. You're also VERY into climbing. If a surface is more than an inch off the ground, it MUST be climbed on. End of discussion. The higher the better.
You love to stand on the back of the couch, looking over, almost to the point of falling (a little too close to falling off for mommy's comfort) - I keep waiting for you to actually fall - I know it's inevitable. Yesterday, I came out of the shower to find you wailing away. I asked Sierra what happened, and as best as I could tell, you climbed into the ottoman (you know, the one that comes with the rocking chair and also rocks?) and tried to climb into your crib, but lost your balance and hit your head on the crib. You were fine after a hug from mommy. You might have a sensitive soul, but you're one tough kid. Last weekend, we went to a sandle castle exposition and they had a bounce house there for the kids. You went in with the 2-5 year olds. You totally held your own. 2 other moms commented on how tough you were. If they only knew. :-)

You are a BIG boy these days, at least for a heart kid! You're weighing in at a hefty 24 and 1/2 pounds (a hair over the 25th percentile) and 32 1/2 inches (about the 55th percentile). Although you're fairly picky and won't each too much of one thing, you do love to try most things. Your favorite is to dig through mama's salads and eat anything you find - lettuce, carrots, cucumbers, bell peppers, broccoli or croutons (amazing, right?). And you haven't met a pasta you didn't like; but potatoes, forget it. You won't touch mashed potatoes with a 10 foot pole, which I totally don't get! But most things you'll eat, as long as they've been liberally doused with ketchup, just like sissy (at least I know we'll get more use out of the "I put Ketchup on my Ketchup" shirt)! And you LOVE all types of shredded meats. You also could easily eat 3 or 4 packs a day of the freeze dried fruit from Costco. THANK YOU COSTCO for helping keep my kid chunky!!!

And you are talking a mile a minute these days. You have about 35 words you use with regularity and it seems you're adding every day. When you say "oh, no" or "morning" in your sweet high voice, it melts my heart. Or when you run after me, screaming "NACK! NACK! NACK!" (Bodie-speak for "snack"). Your newest (and my favorite, by far) is "annoying." You alternately pull up your shirt to point at your holter monitor and hold your hand out, pointing to the bandaid you keep taking off your pinkie (courtesy of an unfortunate encounter with an exacto knife last week), saying "noying, noying!!!" So.Stinking.Cute.

You are VERY into books these days, which makes mama very happy. Last night after bath, you grabbed a book and hopped up on the couch, reading it to yourself.
You're finally back into the kissing stage now, which I absolutely love. You'll come give mama a kiss and then toddle off to go play in your kitchen. I love it.
You are SUCH a big boy and at such a fun stage. We are so grateful God has blessed us with you for so long and we pray he continues to for a VERY long time to come!
Love, Mommy & Daddy


Monday, August 15, 2011

A Chip off the Old Block

We already know Bodie looks As evidenced by this pic of Dusk as a young'un...
And we know he inherited A LOT of his daddy's personality. And we know that, in addition to his structural defect (HLHS), Bodie also inherited an electrical current issue (low resting heartrate combined with arrhythmia's) from daddy, grandpa and great granddad. (Daddy also has a structural defect, Non Compaction of the Left Ventricle (NCLV), also very rare like HLHS.)

Well, in an odd twist of things, both Bodie and Daddy ended up with holter monitors today! A holter monitor is a 24-hour continual monitoring of heart rhythm and activity. Bodie earned his thanks to his tachycardia last week; his cardiologist wants to make sure the Propranolol we started him on is doing the job. And daddy earned his thanks to a miserably failed stress test (his heart, too, got tachycardic)(like father, like son, right?)Daddy's cardiologist is running the necessary tests to determine whether Dusk needs a defibrillator :-(. His tests include a 24 hour holter, an MRI and a cardiac cath. This is all pretty serious stuff. We would really appreciate any and all prayers you can put forth for good results for daddy.

As far as Bodie, he rocked his cardiology appointment today!!! No echo, since last week's echo at the hospital looked good enough his card didn't feel we needed another one already (in last week's echo, his function was qualitatively lower than usual, but his tricuspid and aortic valve regurgitation had both improved enough that his card believes the lowered function was likely just due to the fact that his ventricle was being paced during the echo, which doesn't usually happen for him - the pacemaker was pacing the ventricle as a result of the EAT he was in; so on the whole, she was happy with the echo). But we did have length, weight, blood pressure, ekg and sats.

The last few appointments have been SO tough and Bodie was a nightmare at the hospital anytime anyone came near him with a blood pressure cuff or pulse ox (the echo tech actually said in the report that Bodie was a "tough patient" Ha!). Nothing worked to distract him - not toys, not books, not even his beloved Will.I.Am. singing "What I am". So, mommy decided to pull out all the stops and find a new strategy, which included all the junk food she could find in the pharmacy downstairs from his cardiologist. Like I said, no mother of the year award for me...unless it's given by the cardiology nurses - because he did not cry once!!! Sure, he ate an ENTIRE bag of M&M's (yes, you read that right) and 1/2 a bag of Reeses Pieces and wouldn't let go of the Oreo Cakester to save his life. But you know what? It was so worth it! For the first time in probably close to a year, the nurse was even able to get blood pressure readings on all 4 limbs (usually, we're exceedingly lucky if he stops screaming long enough to get 1 limb). So, say what you will, but it worked. So, I'm giving myself a pat on the back for outhinking my 18 month old for once. Oh yeah, and giving him a pat on the back for not losing his cookies the entire time. Good growth, good ekg results, good blood pressure results. So all in all, a VERY good cardiology appointment. Don't have to go back for 3 months! YAY!!!

So tonight, I celebrate by cuddling up with my favorite husband and his little mini-me, holter monitors and all...


Wednesday, August 10, 2011

The Miracle Worker

WE'RE HOME!!! We got discharged at about noon today, making it our shortest hospital admission yet - and probably one of the shortest most of our nurses had ever seen! As you can see, Bodie was AOK with being discharged... his carseat, ready and raring to head home (yes, that's a Chicken McNugget in his hand - no Mother of the Year award for me this year, but hey, ya do what ya gotta do and there just so happens to be a McDonald's on the way out of the hospital).

This admission was great in a lot of ways - mostly because it was short, but also because it afforded me an opportunity to check out the new hospital. When you have a medically fragile child, it's almost a certainty that your future will hold hospital stays at one point or another, so knowing we'll have a wonderful place to call home when that happens provides more comfort to me than I can express. It also gave me a chance to connect with some nurses that I hadn't seen in quite a while.

One of those nurses was Nickie. Although all of Bodie's doctors and nurses have played a vital role in getting him where he is today, there is a short list at CHLA whom I hold directly responsible for the fact that he is even alive, those who have been direct participants in the miracles that God has sent to kept him here. Let me back up for just a second. Part of the reason it is so heartwarming to come back to CHLA (for clinic visits and short admissions, that is) is to see the jaws drop when Bodie comes walking down the hallway. It's hard to explain, except to say that very few actually expected Bodie to survive what he did, let alone to be doing so incredibly well now. I had more than one nurse tell me they wouldn't have bet on Bodie and yet, look at him now. He is truly a living walking miracle - it's hard to dispute that. When you hear medical personnel who deal with these kind of kids day in and day out use that term to describe your child, it hits home even more.

As I said, there is a short list of individuals who God truly used to get those miracles done. Dr. Starnes, of course, for having the God-given talent that he does, for mending our son's heart in such an astounding way. Dr. Rivera, for having the incredible insight to suggest pacing Bodie when we were thisclose to losing him and everyone in the room knew it. Dr. Bar Cohen, for working tirelessly to figure out the puzzle of Bodie when no one else could, and presenting his solution with such humor and compassion at a time when we REALLY needed that. Dr. Moromisato, for always getting Bodie at his worst and stabilizing him in record time. And Nurse Nickie, who helped me realize my power as a parent, who made sure I knew exactly what an RRT was, so that I would know how to call it when I needed to. Nickie wasn't even our nurse the day I called the RRT for Bodie - and yet, I know I would never have even called it were it not for her. And Bodie didn't have time to spare; had I called that RRT 10 minutes later (perhaps 5 minutes, maybe even less), I don't think Bodie would be here today.

Nicki stopped by our room this morning to see Bodie and I almost started crying. Truly, I can't think of her without getting a lump in my throat (well, if I'm being honest, I can't think of any of the individuals listed above without getting teary-eyed). So, I was beyond thrilled to get a picture of Bodie with Nicki...
and, playing with one of our favorite nurse practitioners, Caroline. (CHLA has to have the best Nurse Practitioners around - I love them all so much!)
I just love how you can see in both of their expressions how much they love Bodie. We are SO lucky to have a second home at CHLA. Makes our inevitable visits more bearable. :-)


Tuesday, August 9, 2011

This place is nice, but...

Apparently, Bodie heard all about the brand new hospital CHLA just opened and was NOT content to wait all the way until his next scheduled appointment in September to check it out...because, here we find ourselves, in the brand spanking new CardioVascular Acute Care Unit. Ick.

The downside, of course, is that it is the stinking hospital. No fun, right? But the upside is that the new CVACU is incredible. Really, the whole hospital is. The ER is spectactular - quiet and all rooms are private (I mean, seriously, have you ever heard of that in an ER? Incredible). And where we're at now, on what was formerly known as "the floor" (or informally known as the 10th circle of Hell, depending on who you were talking to and how long their child had been stuck there), it is a whole new ballgame. It is beautiful, almost all of the rooms are private with window sleeper beds and beautiful views of LA, they each have their own bathroom with a shower that parents can use as well, and it is SO quiet. A lot of our favorite nurses came over from the floor to this new unit, so it's been so exciting to see such familiar faces. Bodie has been walking the halls like he owns the place, flirting like crazy. It's SO neat to see the nurses who loved him so much as a frail little newborn take to him now as a silly little toddler.

The best part of the new hospital, in my opinion, is the more family centered environment. The hospital has changed its policy on visitation - previously, patients were allowed only 2 visitors at a time and mom and dad were counted in that total. Yes, you read that right - so if you had another visitor, either mom or dad would have to go sit downstairs and wait. It totally sucked. But now, there is so much more freedom to bring other family members and friends in. I love that! Tonight, Dusk and Sierra came up and brought dinner. It was so fun to eat dinner together in our room, watch the kids play together for a bit, and then give them baths in the bathtub in our room. Really, it was such a blessing and so wonderful for our family. As you can see, the kids thought it was a lot of fun...

Of course, the big question, WHY are we here? Well, as I mentioned Bodie has been sick for almost a week now, first with a rash, then with a low-grade fever. Sunday night, he added enough inconsolability to the list that we took him into the CHLA ER. Since his eyes were bloodshot and his ears were red, they told us it was either a virus or a bacterial infection and sent us on our way with antibiotics. Then, Monday night, his heart rate jumped quite a bit (we have an at-home pulse ox and while he usually sits at 80bpm while he sleeps, he was in the 140's). Our cardiologist said it was probably his body responding to the bug and just to watch it. By this morning, he was sitting between 180 and 200. Yeah, crazy. So, after consulting with both Bodie's cardiologist and his electrophysiologist (he specializes in heart rhythym issues), it was decided that Bodie should be admitted. His EP wasn't especially concerned about the heartrate itself, but he was concerned about his myriad of odd symptoms. He wanted Bodie admitted just to get another set of eyes on him and make sure it was just the bug causing EAT (atrial tachycardia - basically, a really fast heart rate) and not something more serious (like, say, Kawasaki's Disease).

A good lookover later, I think everyone's pretty convinced it's just a bug that he's getting over at this point. But they're putting him on Propranalol (a beta blocker, to bring his heart rate down) and want to watch him. God willing, he will respond well and we'll be out of here SOON (hoping for tomorrow, but with hospital life, you just never know). So we definitely covet your prayers for a VERY short hospital stay this time around. And, in the meantime, we'll just enjoy this hotel, er, I mean, hospital. ;-)


Saturday, August 6, 2011

This little piggy

Last weekend, when I was up visiting my parents, we took the kids to the Mid State Fair. The Mid State Fair is an awesome fair - I grew up going there every summer and have such fond memories. I was so excited to take the kids this year! We had a great time! While Sierra has always been more or less interested in animals (more interested in looking at them, less interested in actually getting close and touching them), Bodie is most definitely an animal lover (sorry daddy, but I expect a family dog is in our future!).

He liked all of the animals, but was absolutely OBSESSED with the pigs, as you can see from the below video:
(uh...please ignore the whole-stepping-on-the-piggy - I did mention the kid likes to climb on anything and everything, right?)

He kept going up to them, touching and grabbing them, and then backing away the second they tried to touch him with their snouts. It was really funny. He was quite the character. Definitely a memorable trip to the fair. :-)

Nothing says summer like kiddos sharing a chocolate covered banana...

and again, with the pigs...

You know, it's really too bad these kids just don't have a good quality of life, huh? Guess no one told Bodie! ;-)And, like usual, we snapped a few other fun pics over the weekend (what can I say but that I LOVE my camera?) Bodie with the birdbath in my parent's backyard... In other news, please keep Bodie in your prayers. He broke out in a really bad rash earlier this week and now has a low-grade fever to go along with it. (As an aside, I think it's hilarious that Dusk asked me "where on earth does this kid get this stuff?" I could only muster an "uh, did you not see the piggy video? It's impossible to keep this kid from sticking his hands in his mouth after touching everything filthy in sight. A mama can only do so much...")

Anyway, there was a concern that it might be Scarlet Fever (not really a super big deal - that's essentially advanced Strep Throat and is treated pretty easily with antibiotics, but it CAN BE a big deal for heart kiddos because if left untreated, it can turn into Rheumatic Fever, which can damage the heart - not a good thing for a heart that's already damaged by definition). His pediatrician did a quick test that identifies 80% of the cases of scarlet fever/strep and that came back negative (we're waiting on results of the 72hr culture, which would be 100% accurate). She's pretty sure it's just a virus and we need to keep an eye on it. But last night was rough - nobody (except Sierra, whose used to sleeping through ridiculous amounts of noise after having been in daycare so long) got much sleep tonight. Lots of crying and whimpering coming from Bodie. So please keep him in your prayers, that he kicks whatever this is to the curb SOON. Also, big cardiology appointment coming up Friday, which means mama's heart is already in her throat. Please pray for good results there! Thanks!

Thursday, August 4, 2011

Spreading the HOPE

When I was pregnant with Bodie, God put several individuals in my path to make a very scary walk slightly less scary, to give me HOPE.

The first was Nancy Kim, the cardiologist who saw me my entire pregnancy and who would later become Bodie's primary cardiologist. After an unbearable appointment with the perinatologist who diagnosed Bodie, we headed across the hall to meet with the cardiologist who "happened to be" in the Prenatal Diagnosis Center doing consulations that day. (I use quotations, because there is no way our meeting was by chance - I believe God put me in that office when he did for a reason - on a day Dr. Kim was there.) Dr. Kim was amazing - she was thorough and compassionate and did not downplay the severity of the heart condition,but gave me my first glimmer of HOPE. She was the first one to tell me that while some hypoplasts have significant complications and the first year would likely be unbelievably rough, many do go on to lead normal lives. It was that HOPE that got me through my initial diagnosis and the weeks to follow. I will forever be grateful to Dr. Kim and what she gave to our family.
The second was Townes Hale and his mom Sara (and their entire family, really). I met Sara through the California Heart Connection, an online community of individuals whose families have been affected by Congenital Heart Defects (both parents of heart kiddos and adults living with CHDs). In this electronic age, it's common to meet other heart parents online. But to take it a step further and actually meet them in person is a little more rare. Sara and I did just that - and we happened to discover that we lived 10 minutes away from each other and her son, Townes (just 14 months older than Bodie) had the same surgeon Bodie would have and was treated at CHLA as well. The first time meeting Townes (I was still pregnant at that point) was incredible. To see this little guy, crawling around everywhere, as sweet and cheeky as could be, was a huge dose of HOPE for me. For the first time, I believed that our child could live a truly normal life, where no one looking at him would even know about his or her special little heart. Sara gave me a picture of Townes that to this day I have on the side of our fridge. For months, it gave me the HOPE to keep on going. I know for a fact that meeting Townes was a huge turning point for my husband. It was the first time he realized that our baby might actually be ok.
The third was Nate Marley and his parents, Debra and Bruce. Nate happened to be waiting in the cardiology waiting room with Debra and Bruce the day we had our consultation with Dr. Starnes. I remember her asking me if our baby had a heart problem. I answered that yes, our baby was to be born with HLHS. I expected her to be shocked (as most are when they hear about HLHS), but she just casually mentioned that her son had HRHS and had had the same surgeries our baby would have. I remember looking over at Nate, this BEAUTIFUL little almost-3-year old little boy, so full of life and energy and thinking no way!!! No flipping way could this totally healthy happy little guy really have such a major heart defect. For me, that moment was when it sunk in that maybe, just maybe, our child really could be just like any other kid, other than a broken heart. That moment was huge for me.

For me, meeting Townes and Nate gave me such HOPE and inspiration that it's hard to put into words, even today. And it's weird to say I'm on "the other side" because truly, I'm not. We still have at least one open-heart surgery in the not-too-distant future. So I guess it's fair to say I'm in the middle (but my mindset about that is a whole nother Oprah for another blogpost). In any case, I'm past the prenatal/Norwood/interstage craziness, thank God!!! But I'm still looking to older children for my hope for Bodie. I'm looking to "post-Fontaners" and especially the few HLHS adults I know for my hope that Bodie can continue to thrive.

And in the meantime, I'm trying to give back where I can, to pass along that same HOPE to moms just starting their journeys with this terrible diagnosis. Sisters by Heart is one way I'm doing that. In every package we send out, we include pictures and bios of our kids, so that these new moms can see examples of kids doing well and thriving despite their little broken hearts. And occassionally, I am able to reach out even beyond that and meet moms in person. I had the privilege of doing this last weekend, when I was up at my parents. I met an expectant mom through Facebook some months ago who was wondering how to go about finding an OB at UCLA, where she was planning on delivering her HLHS baby in the Fall. I asked her about UCLA vs. CHLA and one thing led to another and we found out that she is from my hometown!!! I've mentioned this before (when I posted about her benefit), but seriously, the town has 17,000 people, a good portion of whom are retired. C'mon people, what are the odds? Clearly, God had His hand in us meeting. Anyway, we had the opportunity to meet in person this past weekend! It was so fun to have both Melissa and her mother over for dinner on Friday night and just spend some time with them, trying to help Melissa prepare, as best as she can, for what's ahead. Trying to let her know what to expect. And, hopefully, giving her some extra HOPE as she was watching Bodie run around and rearrange furniture in my parents dining room.

Melissa, Baby Ella (still baking!), Bodie and me

Please keep Melissa and Baby Ella in your prayers as Melissa hits the home stretch (she only has a month left!!!) Thanks!


Wednesday, August 3, 2011

Sunshine on my Shoulders

So...after I titled my last post "Rocky Mountain High" even though we were really in the Sierra Nevadas, my husband set me straight. (Apparently, people who grew up in the mountains are very particular about not getting them mixed up - who knew???) So, I figured I'd play it safe and use one of John Denver's other favorites for the rest of our Tahoe recap. :-) (And by the way, I've been meaning to get to this recap for over a week and a half now, but things have just been so busy, I haven't had a chance!)

The rest of our vacation was wonderful! We had a LOT of beach time...

park time... big time bonding with the grandparents time (this was HUGE for Bodie, by the way - and took us until the end of our vacation to get to this point)...

along with sibling bonding time (LOVE this pic)....
Our trip culminated with a trip out to the ranch where Dusk spent many of his formative years. It was so humbling to get to introduce Bodie to so many aunts, uncles and cousins who've been praying so hard for Bodie. It was fun to see their reactions when this stubborn little toehead came rumbling through, all piss and vinegar - hardly the demure little guy one might expect of child with such a major heart defect. The kids even got to go on a slip 'n' slide for the first time! Sierra had a GREAT time - and even Bodie got in the action (and gave everyone quite a scare with his little blueberry lips the second he got cold (other than mommy, and daddy, of course, who are used to it)!)

The kids had a blast at the ranch. We are rapidly discovering that, while Sierra likes animals, Bodie is a bonafied animal lover...
(he is actually feeding the horse here)
The kids also had a blast just playing around and goofing off with all the other young kids there!
Sweet cousin Abigail, just a few months younger than Bodie...
Sierra and Carabeth - such a WONDERFUL little girl! Sierra had so much fun playing with Carabeth - it was such a blessing for her to find such a great little girl to look up to. :-)
On the way home, we stopped off at the Bodie sign. This is the turnoff to the road that takes you to the town that Bodie was named after. We didn't actually make it to the town itself (maybe next trip!)but we did get a pic of the sign!
Our vacation, in a word, was awesome. It was far better than we could have imagined. We never expected Bodie to do as well as he did. He surprised everyone, even his cardiologist, when we got back and I called to let her know that we had not used the oxygen even once. She had to ask twice to make sure she heard me correctly. Go Bodie! :-)

So, even with the stomach flu, vomiting whiny kids, waaaaaaaaaaaay too many stops along the way and clinginess galore, it turned into the best vacation ever. Thank you so much for all of your prayers! Bodie says thank you...
...oh wait...maybe he's actually saying "whew...that was the best.vacation.ever. Now I need a vacation from my vacation" I can so relate...