Monday, January 28, 2013

Red for Our Hero, Take 2!

If you've been following our blog for some time, you may remember in 2011, I asked our blog followers to wear red in Bodie's honor. Well, it's that time of year again and I'd love to do it again!!! 
Friday, February 1 is National "Wear Red" Day - a day to wear red in honor of all of our heart heroes!!! Won't you please wear red Friday in Bodie's honor??? I know we have a lot of followers on the blog, many of whom we don't even know. I would LOVE it if as many of you as possible would take pics of yourself wearing red on Friday and send them to me- then I can share them on the blog! If you would email me the pic, your name and geographic location (at, I would really appreciate it!

It is our hope that Bodie will be a little more excited about this project than he was when we did it last time...

Sunday, January 27, 2013

You went WHERE? And for HOW LONG?

Whew. I just got back from a weekend in Cincinnati. Actually, "weekend" is a bit of an overstatement. More like 29 hours. Yikes.

On Thursday afternoon, I drove an hour north to meet my parents and hand the kids off to them for the weekend (bless their hearts, they actually VOLUNTEERED for this task - ok, I  may not have mentioned that both of them end up in bed with us most nights until I was literally handing them over to my parents - the little details, right?). Then, I caught the Red Eye flight Thursday night from LAX to Chicago O'Hare and then to Cincy.

Well, actually it wasn't so much the midnight flight. It was SUPPOSED to be the midnight flight. But what actually went down was a little different. We loaded onto the plane, all 800,000 of us (apparently, EVERYONE in the greater Los Angeles area had decided they NEEDED to fly to Chicago on Thursday night). We got all packed in like sardines, the doors closed and they asked us to turn off our electronic devices. THEN, the captain came over the intercom saying "Well, folks. I'm really sorry, but...I just broke the plane." (nervous laughter) "But rest assured, we're getting a mechanic out here and will hopefully get it fixed shortly." And this announcement came approximately 10 seconds after, thinking I was in the clear (on account of the closed doors and turning off electronics announcement) and anticipating a red eye flight, I had taken an Ambien. Fantastic.

45 minutes later, the pilot comes back on, saying "I'm sorry folks, but the plane can't be fixed. We'll need to deplane and find another plane." So, I got to deplane, stand around in the LAX terminal for an hour trying to reschedule connecting flights and wait for a new plane and then reboard said new plane...all while hopped up on Ambien, completely dizzy and disoriented. SUPER fun! 

We finally left and I slept through the flight, waking up to hear our friendly pilot saying "Well, folks, we're over Chicago now! But, unfortunately, a light dusting of snow has just started, so they've asked us to hold our landing and circle until they've figured it out." Wait, WHAT? Chicago, the city where it snows 6 months out of the year, is asking us to delay landing due to a "light dusting" of snow? Apparently so...we finally landed, and I had approximately 25 minutes to get from my American my new flight, which happened to be a Delta a different terminal. I don't know if any of you have been at O'Hare before, but it is freaking ginormous, with nary a people mover or tram in sight (of course, I suppose there could have been one, but with my Ambien stupor and all I just didn't notice it). So I was full out sprinting (which was super fun, given an injured knee due to a bad IT band), to get there and find out American had improperly issued my ticket change and Delta didn't have me on the flight! I was beginning to think someone seriously didn't want me to make it to Cincinnati! But, thankfully, 2 amazing Delta agents worked it out for me and I got on the plane in the knick of time for an uneventful last leg of my flight into Cincy and an arrival to the conference just in time to miss the entire morning session.

But you know what?!? It was 100,000,000% worth it, because the conference was AH-MAZING! It was a Learning Session of The National Pediatric Cardiology Improvement Collaborative (NPC-QIC), a collaboration of cardiothorasic centers nationwide working to improve the outcomes of children born with HLHS between the Norwood and the Glenn surgeries (the riskiest period for these kiddos). Imagine a room filled with cardiologists, pediatricians, therapists, nutritionists and nurse practitioners from 40 different centers, all working together and sharing information on best practices to improve the outcomes for these kids! Talk about  incredible! 

And the best part is, they want parents to be involved. They didn't just invite us to sit and observe them in action (although, I'll be honest, I did a lot of that, too, because it was really neat to watch them and I learned so much!); they wanted us to be ACTIVE participants and sought out our input on a lot of different issues. When they did the parent panels and the questions just kept coming, it became apparent that the practitioners highly valued parental input, which was really amazing to see. I don't know that there's any other medical field quite like pediatric CT, where the practitioners are really turning over every stone and working closely with parents and other practitioners to get the best possible outcomes. I have never been prouder to be a part of this community. What a privilege and an honor to get to attend this conference!

One of the most fun parts was getting to spend time with the other parents there. I had the opportunity to meet and learn from 10 new parents I hadn't met before, which was really neat - and, of the 15 parents in attendance, 5 of us were from Sisters by Heart, so it was really a mini-reunion for us!
Kathy even bought her little guy, Jake on Saturday afternoon so we could all meet him in person! Jake is 6 weeks younger than Bodie and we have been following one another's journeys since before the boys were born, so it was extra special for me to meet Jake!
At the end of the conference, another fellow heart mom who lives in Cincinnati picked me up to take me to the airport and we swung by her house and I got to meet her fellow heart warrior, Milosh, his awesome dad Ned and his incredible sister, Bella. Seriously, this girl was so amazingly sweet. Once she warmed up to me (which took her approximately 1/2 a second), she clung to me and just let me hug on her. She reminded me SO MUCH of Sierra. I'm telling you, this girl's got a sweet, sweet soul on her. 
And Milosh, sweet, sweet Milosh. What an honor to meet this kid. His mom Brie and I had met in an online due date club, before we ever knew about our boys' special hearts. Bodie, of course, was diagnosed prenatally; Milosh was not quite so lucky. He was born with Barth Syndrome and related cardiomyopathy.  He had a heck of a first year and, literally, just in time, received a heart transplant at 9 months old. It was really neat to get a chance to meet him in person. What a strong little dude he is!
After meeting Brie and her family, I headed back to Cincy for a (thankfully!) uneventful trip home! I got home at 10pm last night and then drove 3 hours north this morning to pick up the kiddos from my parents - and then drove back home tonight. But, like I said, it was totally worth it!

And the kids? They did INCREDIBLE. We're talking sleeping through the night (without trying to sneak into Gigi and Popo's bed), eating super well (even Bodie), staying at the table until everyone was done eating, sleeping in late, the whole nine yards. And had a BLAST! 
Getting ice cream for finishing their lunches:
 Playing with "Auntie" Phyllis:
 Grabbing dinner at Frank's before the first (of 2!!!) Cal Poly basketball games:
Grabbing lunch at Subway with Popo (Popo, apparently, was a BIG HIT with the kids this weekend, and had all sorts of fun things planned for them to do!):
 Bodie, being, well...Bodie:
Thank you SO MUCH Gigi and Popo for taking the kids so that I could get away for a wonderful weekend!

Wednesday, January 2, 2013

Life Lessons

We've been working on the concept of chores and allowance with the kids now...for awhile. Totally my fault...not theirs. I always start with the best of intentions, put up cool chore charts with stickers, etc. And the kids are TOTALLY into it. We do a couple of days of stickers and happens. We're too busy a couple of days in a row, I keep telling the kids "it's ok - we'll do chore charts tomorrow" and the next thing I know 2 weeks have gone by, and the chore charts are a thing of the past. PLEASE tell me I'm not the only mom who does this...please?

Anyway, one of the times we started them this past Fall, Sierra and I went to Target to pick out what she wanted to save her money for. She picked out this super cute Snow White Doll. We took a picture of it and everything and she's mentioned it a few times since.

So, yesterday, what with the new year and all (and my new goal of living intentionally - more on that later), we got the chore charts going again. This time, I had the kids help me figure out what chores made the most sense - and they're pretty simple: Get dressed, make beds and brush teeth in the morning, clean up their living room and bedroom toys in the afternoon, and help with one dinner chore (setting or clearing the table, unloading the dishwasher, sweeping the kitchen, etc.) at night. Sierra also has homework and throwing out the bathroom trash on hers. We're 2 days into it, and still doing I guess that's a good sign!

We also got caught up on all the partial charts I saved over the past 6 months or so. With their allowance, they get paid a dime for each chore completed on their chart. Once I pay all the dimes out they're owed, we count them out in groups of 10 - the first dime goes in their "GIVE" jar (to take to church on Sunday (for Bodie) or chapel at school (for Sierra), the second dime goes in their "SAVE" jar, and the remaining 8 dimes go in their "SPEND" jar. Sounds pretty simple, right? And it totally would be, were it not for Bodie grabbing random dimes out of the piles and Sierra counting alongside me. Have you ever tried counting a stack of dimes while one child is shouting random numbers at you and another child is randomly pulling dimes out of the stack?!? Fun times.

Anyway, when all was said and done, I realized Sierra had enough for her Snow White Doll! SO exciting! So we found 4 local Target stores who said they had it in stock (I tried explaining the concept of Amazon to her - but apparently, the fact that she could save some of her hard earned allowance by getting it cheaper from Amazon was outweighed by the fact that she could have it RIGHTTHISSECOND if she got it at Target. What can I say? She's definitely my kid.). It was super fun to take both kids with me into the toy section of each store to discover that the first 3 did not actually have it in stock. They had dozens of every other princess except Snow White. Seriously, is she just not that popular? Figures.

But we found it at Store #4 and sweet glory, it was even ON CLEARANCE (which probably explains why no one else had her anymore). So, Sierra had enough money left over to buy another little dolly and even one with a "Little Brother" shirt for Bodie. So stinking adorable.
And mommy learned a life lesson today as's best to hit CoinStar before cashing in your allowance...because people in the line behind you at Target watching the slowest cashier ever count out $30.52 in dimes aren't quite as impressed with your children learning life lessons as you are. Seriously, the guy counted more slowly than I did last night - and he didn't have kids shouting numbers at him and stealing dimes while he was doing it!!! Go figure...

Sierra appraising her prize.

(oh, and my crazy carseat fanatic blog followers (because I am SO one of you guys!), these last 2 pictures were taken while parked, long before the car started - she was most definitely fully strapped in by the time we started the car!)

So proud. This is definitely one life lesson that was FUN to learn!