Tuesday, June 26, 2012

Busy Bees

Wondering where we've been? Ok, probably not (I think you all know no news is good news with our family), but it's been almost 3 weeks since I last blogged! Rest assured, all is GREAT with us - we've just been very very busy. Here's what we've been up to...

1. We've been ROCKING cardiology appointments.
Bodie had his quarterly cardiology appointment earlier this month (for the record, it was the FIRST time he's actually made it the full 3 months without an appointment inbetween to check his tachycardia, pulmonary hypertension or some other fun thing!!!) It went GREAT! His heart function looked beautiful, with very little, if any, valve regurgitation. We'll be making some major med changes (dropping his pulmonary hypertension med and changing his beta blocker from a 3x/day med to a 2x/day med) - his doctor was ok with changing them earlier this month, but he's doing so well now, we didn't want to rock the boat right before vacation. So, we'll be making those changes later this summer, after our vacation. We also got clearance to do BOTH our Tahoe trip and our airplane ride later this summer sans oxygen since he didn't need the oxygen we took to Tahoe last summer (super excited, but nervous about this one!). We left with instructions to enjoy our summer and come back in 3 months. After the really rough start Bodie had, we continue to feel abundantly blessed with each good cardiology appointment. 

2. We have NOT been rocking dental appointments.
Daddy and I both had check ups - he got off with no work needing to be done. Mommy had to have a cavity filled and 3 little ones between the teeth filled as well. Never had a cavity until I turned 21, had 2 that year and none since. Now 4. Awesomeness. I'm totally hanging my head in shame - and then blaming Bodie. Heck, we blame the stress surrounding his medical issues for everything else - why not this, too???

3. We've been injuring ourselves. 
Bodie's always sporting new shiners on his head and face (this kid seriously has no spacial awareness) and Sierra has permanent bruises on her shins from her twice-weekly falls down the two (yes, two) steps in our house (seriously, WHY can the kid not learn to slow down?!? Ok wait, scratch that - she's my kid). Daddy's been the worst culprit by far, falling off a retaining wall and spraining his ankle. Badly. (But I do have to admit, it was almost worth it, to see Bodie's expression when we woke up from nap to find Daddy crawling to get across the yard - the kid immediately dropped to all 4's and started crawling right behind him. Seriously priceless.)

4. We've been so busy that we ended up at Daddy's doctor's appointment (had to be a full family affair, what with Daddy's inability to drive thanks to the aforementioned sprain) with a shoe-less Bodie (oops - I think that was my responsibility, although Daddy keeps trying to say he left Sierra (yes, the 5 year old) in charge of it). My go-with-the-flow response? "No prob. We'll just drop you off and run to CVS. I'm sure they'll have flip-flops or something." They did. Well, the 3rd CVS we tried did. And they did have "something" indeed.
Yes, they're for real. And yes, he stinking LOVES them and wants to wear them all.the.time. Ah well, it just adds to his fashion sense.

5. Speaking of which, we've been making fashion statements...
and growing some mad "PUHlease mommy, won't you cut it?!?" hair...
(Rest assured, hair appointment has been scheduled...for tomorrow)
(yes, when it's possible to channel Sierra circa 2009, it's TIME for a haircut)

6. We've been "library'ing" it, signing both kids up for the Summer Reading Program. 
(Don't be fooled by the pics - Sierra's totally into it, reading way ahead already (well, looking through her books) and digging the prizes. Bodie can't be distracted from his path of destruction long enough to sit down and read for a whole 30 min. Baby steps.)

7. We've been making our own finger paint and painting away.

8. We've been singing A LOT. NOTHING makes my heart smile like hearing my kids sing praise songs. 
(He is singing "The B-I-B-L-E" (you know, if you don't speak Bodie), and if you can't see the video - just click here. It's worth it, I promise). (Oh, and pause the music on the side of the blog to hear the video!)

9. We're potty training!!! 
(Isn't that sticker adorable?!? They have them in Bodie's class at church!) Crossing our fingers, but so far, the kiddo looks good and ready to be done with the pull-ups! (whew - that was SO much easier than the year and a half it took us to potty-train Sierra!)

10. We've been getting ready for 4th of July and our annual trip to Tahoe!!!
We are T minus "so close we can almost smell the mountain air" to Tahoe!!! We're so excited! Please pray that all goes well and the little man handles the altitude as well as he did last year!

Hope you're all enjoying your summer as much as we are! Have a great 4th of July!

Thursday, June 7, 2012

Heart Heroes, Unite

Last weekend, we raced from Sierra's preschool graduation down to Orange County for the annual California Heart Connection picnic (the events actually overlapped by an hour or so - so much for our new house rule "we will not be over scheduled" - hey, this mama is a work in progress - we'll get there eventually). This was our second year at the event, and it was SO fun. It was even more fun this year than last year, since we knew so many families there! So fun to watch these little CHDers getting bigger and stronger every year, continuing to defy the odds every day. It was really neat not just to spend time with close friends, but see old friends from our many hospital stays, and provide inspiration for parents just starting this journey with their little infants, dependent on feeding tubes and oxygen. The whole thing was good for my soul. And for the kids, of course. Sierra ran like mad with the older siblings, and Bodie LOVED it. Absolutely LOVED it - especially this little heart monkey they had for the heart kiddos. :-)
Me and the kiddos, enjoying the festivities...

We got to see lots of old friends. Here are the miracle boys, Bodie (2), Trevor (5) and Townes (3). Both of these adorable little dudes are post-Fontaners and I love how these guys all look like they could be brothers! (one of the dads standing around watching actually thought Bodie and Townes were brothers!)

Bodie finally got to meet sweet Lorelei, who has HLHS like Bodie and is just a few days younger than him. She and Bodie were at CHLA at the same time for quite awhile, but her mother Sabrina and I didn't actually meet until both kiddos were home. She's gearing up for her Fontan this Fall, so prayers sent her way would be much appreciated.

We tried hard to get the kiddos to hug and smile for the camera. Like I said, we tried... and we got Lorelei looking confused and Bodie picking his nose. Awesome. I guess the upside is we got him to stop emptying the coolers and moving the 20 packs of soda long enough to take a picture.
We finally caught a pic of them hugging - and then they promptly lost their balance and landed in a heap on the grass! Haha!

Is there anything more special than a fellow CHD sibling? Sierra with Townes's big sister Evelyn (the girls are 2 months apart in age and are great friends). I cannot tell you how much I love these girls. When they get together, fun and screaming ensues every single time. They are the epitome of what it means to have girlfriends at 5 years old. Love. Love. Love.

We also had an opportunity to take some time to do a special balloon release for sweet Travis, who should have been there at the picnic with us. He went to the picnic in 2010 and his absence was definitely felt both last year and this year.

Our little CHDers (Townes, Grace, Bodie and Trevor) gathered with Jeni...
They released the balloons...
And the balloons promptly went up in the air and stuck in the nearest tree...
...and stayed there for the remainder of the picnic. It was perfect. Travis LOVED trees. And it was as though he was saying "hey wait a minute! I'm supposed to be at this picnic. Like heck I'm leaving! I'm staying right here just as long as you guys are." Best.thing.ever. :-)

We love and miss you every day Trav.

Thought I would close with a pic of Bodie with one of our favorite HLHSers, Jeni. Jeni is 26 (almost 27!) years old with HLHS, one of the oldest living survivors of the Norwood surgery, and just an all around amazing Christian woman. We feel so blessed to have her in our  lives.

 IThis has been a rough week to be involved in the CHD community. I feel like every time I log into Facebook, I am reading about CHDers struggling with Norwood recovery, or battling effusions after the Glenn, or being rehospitalized post-Fontan. More than one has been on ecmo this week and one is passing as I write this. My heart has been so heavy all week. So it is weeks like this that I am especially grateful for events like this, for an opportunity to watch our CHD warriors run together, laugh together and play like typical kids. An opportunity to meet their dads, to hug and laugh with their moms. This weekend was all about HOPE and SUPPORT. To have families walk this journey with us that we are so close to is an amazing thing. And that makes weeks like this totally, completely, 100% worth it. :-) 

Saturday, June 2, 2012

The Graduate

Sweet baby girl, it seems crazy to say it, but you are officially a preschool graduate. Oh I know it's not as big a milestone as graduating from highschool or from college. But it is a big deal to your daddy and me. We can remember when you started at DRCCC, a tiny 4-month old baby girl. The pre-kindergarteners graduating that year seemed light years older than you, a different generation, really. They (now moving from 4th to 5th grade) still do. And here you are, now a graduate! Along the way, you've learned so much, changed so much. You've had a hospital stay, moved into a new house, learned to walk and talk, been to Florida once and Lake Tahoe twice, saw Daddy get a new job, got a baby brother and supported and loved him through everything he went through. And through it all, you have turned into such a sweet, kind, nurturing little girl who LOVES babies (both real and play) and nurturing others. 
We had so much fun celebrating you today, and watching you with all of your classmates. Your graduation was so much fun. We are so grateful to your teachers, most especially
Teacher Nancy, the most incredible and loving pre-k teacher anyone could ask for.

Teacher Debbie, who taught you your ABC's and who will always hold a special place in our hearts.

And last, but never least, Teacher Judith, your precious Juju. You were so lucky to have Juju as your teacher not just for your 2 years in the nursery, but then a 3rd year in the Duckie class. Juju "graduated" to the Duckie class 2 weeks before you did, making your transition so easy and special. We will never forget the love Juju has shown you and the special connection you have shared. She loved you through one of the most difficult times in your life to date. Leaving you in her hands, we always felt as though we were leaving you with one of the few people on the planet who loved you as much as we do. 

We loved reading the special sign your teachers made you, where every single one wrote you a special message. We will cherish it forever. What an amazingly thoughtful gift!

We giggled watching you dance to your favorite song, the "Tooty Tot" with all of your best friends. You're so silly!

My favorite part by far of the entire ceremony was the video, which included baby pictures of you and all of your friends and pictures of each of you during your time at school. Since you had been there since you were so young, your school pictures even had baby pictures (I had forgotten all about your "cute, fat bald stage" (which lasted until you were 2 or so)!!!). And the video included an interview with each child. Your answers were absolutely priceless. 

What did you learn in pre-k? 
No hitting. 
(Yep, everyone laughed at this one!)

What are you most looking forward to in kindergarten? 
Having a picnic next week with my new kindergarten friends. 
(True - we're going to the all-school picnic at her new school next week.)

What do you want to be when you grow up? 
A mommy. 
(Sierra, this has always been, without fail, your answer to this question. It warms my heart to heart it. I hope and pray this is always your wish!)

What are you most grateful to God for? 
My little baby brother
(You melted your mama's heart here!)

Congratulations sweetheart! We are so proud of you and LOVE YOU SO VERY VERY MUCH.

Mommy, Daddy & Bodie