Sunday, February 26, 2012

Project 52.9. Multigenerational...and the Cardiac Sandwich

(I know I'm behind on my Project 52's - I've had a little going on! I'll get caught up, I promise!)

So I know I'm not technically the "sandwich generation" yet (you know, where you're sandwiched between caring for aging parents and growing children at the same time), but I am definitely in my own little cardiac sandwich, if you will, sandwiched between my cardiac loves, caring for both. :-) I had the opportunity to take care of both of my cardiac loves in the hospital the past few weeks.

My LITTLE Cardiac Guy
Since his hospital admission, Bodie has had a great few weeks. I took the kids with me up to the Ella Gives Back event up in SLO (Sierra had a "date night" with Grandma Peg, so I only had to chase 1 kid around - a HUGE shout out to Grandma Peg for helping us out so much!). Bodie had a GREAT time at the event, running around like a madman and (hopefully, at least) impressing upon everyone the importance of research and how great these kids really can do. Here are a few pics from the festivities...
 My little dapper man, all gussied up for the event. I gotta say, his outfit was a HUGE hit, even when he was all soaked from having leaned all the way over into the fountain one too many times!
Here was Bodie with the guest of honor, Baby Ella, 5 months old. (Don't mind the frat boy look - he had just thrown up all over himself (too much candy and running around, I'm afraid - definitely not a "mother of the year award" moment for me!).
 And if you want to know why Bodie looks so stinking thrilled with himself while Ella looks absolutely horrified, see below (click on it to see the full size 12-step pictorial to how Bodie stole his kiss from Ella):
We had the privilege of driving to and from the event with the amazingly inspiring Jeni Busta, a 26-year old HLHS survivor!!!

We had a great time - thank you Melissa and Brady for allowing us to be a part of such an amazing event!

We had to race back to town for a cardiology appointment. So far, Bodie seems to be tolerating the new drug well and he should be close to therapeutic levels by now. We've gone 8 days now without an EAT episode, so we're hopeful that the med is working (the week before and after we switched him to the new med, he had 3 episodes each week, so to go 8 days is HUGE progress for him). His function looks great and the echo showed nothing of any concern. We talked a great deal about Fontan timing and surgical centers, but I'll spare you all those details for now. Just know that the Fontan will be on the horizon sometime in the next 18 months, give or take. Overall it was a great appointment, with good news all the way around.

My BIG Cardiac Guy
Daddy did not have quite the stellar past few weeks that Bodie had, I'm sorry to say. :-( Dusk had his ICD Pacemaker surgery last Tuesday and, while the surgery itself was a success, the wires went exactly where they were supposed to go and they were able to create an arrhythmia that it immediately responded to (to test it out), his recovery has been tough. He spent just a little over 24 hours actually inpatient at the hospital and has been recovering at home since. He has been in a great deal of pain. As the incision pain started to abate, he started developing lower chest cavity muscle cramps. At about 10pm last night, he was in A LOT of pain, but decided he thought he could hold out until this morning to go the ER. But at 1am, in a matter of minutes, the pain moved from the lower chest cavity to all over his chest, and particularly centered right around his heart. The pain was debilitating. Needless to say, our plan of going to the hospital got moved up - stat. Besides, who wants to wait until the morning to go when you can wake the kids out of a dead sleep, throw them in the car, drive the whole family to the ER at 1:30 in the morning, drop daddy off, drive home and then spend 2 hours trying to get a certain feisty 2-year old back to sleep? Next time we have to do a middle of the night ER trip, we're leaving Bodie at home. (And if you work for DCFS, I was only kidding about that last comment!)

Dusk spent the rest of last night in the ED, undergoing a whole host of tests (ICD interrogation, chest x-ray, EKG, pulse ox, multiple blood tests and a ct scan). The overall conclusion is that they really have no idea what was causing the pain, but at this point, they know it's not a heart attack (which honestly is what Dusk was afraid was happening as we were driving up there - very scary) or an embolism (which he is at very high risk for just by virtue of having non-compaction of his left-ventricle; let alone recovering from surgery, being fairly immobile all week due to the pain and not having restarted his blood thinners post-operatively yet, all of which are general risk factors anyway). The general thought is that it's just his muscles not responding well to the ICD placement and we just have to wait it out for them to readjust. In the meantime, we're trying (fairly unsuccessfully, but trying nonetheless) to manage it with round the clock alternating Vicodin/Advil dosing and ice. If his symptoms worsen, we have to go back to the ED.

So there you have it. Both of my cardiac loves giving me a run for my money. If you would, please keep us in your prayers. Pray that we are able to get Dusk's pain under control so that he can be on the road toward recovery with no additional hospital admissions. (Oh, and if you'd like to be on our short "you can totally call me in the middle of the night in an emergency to help out with your kids" list, please do let me know. We promise not to abuse it, but we would like to avoid having to take the kids with us if it happens again (and I'd like to not have to drop my husband off outside the ER and hope he makes it inside, when he may or may not be having a heart attack).)

Thanks so much for your love and prayers! We so appreciate it!

Wednesday, February 22, 2012

Ella Gives Back!

Central Coast followers (and I know I have quite a few of you!), I have a really exciting event to tell you about!!! 

This Thursday, February 23rd (yes, that’s tomorrow – sorry for the late notice, but, as you know, my life has been a little nutso lately!), from 4-10pm, Guiseppe’s Restaurant in Pismo will be host to “Ella Gives Back,” a benefit for CHD Awareness! Come and share appetizers and drinks, hear awesome guest speakers and meet some of the most inspirational kids you could ever have the fortune of coming across (including a certain little man you may already be pretty fond of!). The event is an open house, so come and go as you please – but please do stop by! 

Tickets are $30 and the money will go toward CHD research and helping a CHD family in need! The event is honoring Ella Beckstead, an adorable 5 month old baby girl, who, like Bodie, is beating HLHS every single day. She, like Bodie, has central coast roots – she lives in Arroyo Grande; and Bodie and Ella share not just the same hospital, but even the same surgeon! One of God’s really cool hook-me-ups for me has been meeting Ella and her family. I’ve gotten to know Ella’s amazing parents Melissa and Brady during the past year and can’t wait to help them honor Ella with this very special event. And hey, Bodie and I are driving all the way up from LA – so the way I figure it, if you’re already in the 5 Cities area, you really have no excuse! ;-)

So c’mon over to Guiseppe’s, make your way over to the garden area for a drink and some appetizers, and meet my little man and his amazing heart brothers and sisters – and help raise some much needed funds for CHD research and families while you’re at it! You can purchase tickets here or at the door!

Hope to see you there!
(Oh, and Bodie and I will be there most of the evening, other than right when it starts (since we’ll still be driving up from LA at the time) and at the end (10pm is a little late for me, let alone a 2 year old!) :-)

Sunday, February 19, 2012


My heart is SO unsettled these days. I can feel it everywhere. I look at pictures of sweet Travis DiCarlo on the one-year anniversary of his passing and I feel my heart tighten. I watch my sweet boy struggle to catch his breath and his baby lips turning a deeper shade of purple seemingly by the day, and my mind fixates. I am watching, waiting, for something to happen. Will we have the Fontan this summer? Can he make it to next summer? What if we do? What if we don't? What if he's NOT a Fontan candidate? What if he IS? What if we push for it this summer, before he's really ready weight-wise...and something goes wrong? What if we don't push...and he ends up needing it during cold and flu season...and something goes wrong? 

I was making his birthday cake on Thursday and Dusk asked me why we didn't use Icing Smiles again. I responded that I didn't think we needed to this year because our lives are so "normal" these days, but that I was sure we would next year...and I caught my breath and looked at him. I knew my fear was mirrored in his eyes "what if there's NOT a next year? What if this is the last birthday we celebrate with our son?" This is where my heart is at these days. I AM A MESS.

I don't know why I'm having such a hard time. I'm sure it's partly celebrating Bodie's birthday, which is such an amazing milestone, and being reminded, as most of us are, of the passage of time and the mortality of all of us. It's knowing that we're closer to Bodie's Fontan than to his Glenn - we can no longer pretend it's going to happen "someday." It's our recent struggle to get his high heart rate down. I know it's remembering Travis, and the hopes and dreams his parents had for him.  It's the unbelievable amount of babies we've lost in the CHD community only recently. And I'm sure the fact that Dusk is scheduled for his pacemaker/ICD surgery Tuesday isn't helping matters any.

I know God is in control. I know HIS HAND is on my son always, and most of the time, my heart is ok with that. My heart gets it. Whatever happens on this earth is just temporary, just a fraction of the time we'll spend together in eternity. And most of the time I'm ok with that. But sometimes I'm not. Sometimes, the fact that I'm only human and this is my son I'm talking about takes over. And I wrestle. And I cry. And I worry. I worry that God, in His divine wisdom, has a different plan than I do. And I worry more. 

Today, we covet your prayer. We ask you to pray for the DiCarlos, who wrestle with the angelversary of sweet Travis. Please take a few minutes to go over to their blog and let them know you're thinking about and praying for them today. And please pray for us. Pray for settled hearts. Pray for peace about our son and his future. Pray for daily reminders that God has this all in His control. And pray that Dusk's surgery goes off without a hitch on Tuesday. Thank you as always!


Saturday, February 18, 2012

Birthday Blessings

Today, we celebrated Bodie's birthday! We just had a few families over, but somehow, even just 10 little ones running around managed to create massive amounts of chaos! It was awesome. :-) Here are just a few pics of the festivities (don't mind Bodie's blue lips - I'm afraid he decided to celebrate his birthday party by having an episode of EAT that lasted the entire party - such a bummer, but unfortunately, just kinda what we're dealing with as we're waiting for his new medicine to build up to therapeutic levels - hopefully just another week or 2 before we see these episodes start to diminish)...

Bodie in all his sweet innocence - LOVE this face...
His "big" present was a new bike from Gigi and Popo - he was So excited!
Seriously, have you ever seen a bike so cute?!?
 The theme was Elmo, so of course mama had to make her "Elmo Cake" (I also made it for Sierra's 2nd birthday) - a big shout out to both Grandma Jan and "Auntie" Dottie for helping me get the frosting situation figured out.
 My side of the family - Uncle Matt, Auntie Val, Michael (& Nicole - still baking, due in April!), us, and then Gigi and Popo.
And Dusk's side of the family - Grandma Jan, us, and Popo Alan. (Have to say, Daddy was not doing a very good job of "sucking it up" and pretending to enjoy the pictures here! hahahaha!)
 Bodie with his cake.
Finally, we let the kids decorate cupcakes. We set up frosted cupcakes and bowls of toppings outside and let the kids have at it. Have to say, it is ALWAYS a hit with young kids. They LOVED it - and we loved that the mess stayed outside - for the most part!

Before the party was over, we just HAD to try for a pic with all of the heart kiddos there - Babs, Bodie, Townes and Michael. Well, we tried. This was the best we could do...
But hey, at least Bodie wasn't sobbing like he was last year...
Babs, Bodie and Townes at Bodie's 1st birthday party...

Happy 2nd Birthday to our little man!!! We love you!

Thursday, February 16, 2012

Happy Birthday to our Warrior

Our sweet Bodie,

It seems unreal to be wishing you a Happy 2nd Birthday. This has been such a remarkable year. This is the year you defied the odds and did all the things we didn't even dare to dream we'd get to see you do when we first got your diagnosis. This year, you learned to walk and to talk, and to climb and to jump. You moved from a bottle to a sippy cup and from formula to solids to real food. Your energy for life is contagious. The way you squeal when you see trash trucks, Mickey Mouse, Elmo, Home Depot or anything remotely related to Veggie Tales is beyond adorable. Yes, you're a handful, but we know your fiery determination is the reason you're still with us today - so we wouldn't have it any other way.

We are so proud of you, of the fighter that you are. Quite simply, you are the strongest little boy we know and we feel so blessed to be your parents. Our hearts are heavy when we think of what this next year may bring surgery-wise, but for today, just for today, on your special day, we don't think about that. We rejoice in how far you have come, from this...
 to this
 to this...

Oh how we love you, our sweet baby boy. Happy Birthday to our little Miracle.

Here's just a little something from us to you. (Make sure to pause the regular blog music to hear the music on the slideshow!)

(If you have any difficulty opening the video, you can see it here!


Tuesday, February 14, 2012

Happy Hearts Day!

Happy Valentine's Day from the Bennetts!!! Bodie was discharged yesterday morning! Praise God!!! We decided to celebrate with a 2-year well check and Synagis shots (sorry, big guy). The good news is that the little man is growing well - 27lb5oz (41%) and 35 1/2in (80%)! Definitely long and lean!

Hope your Valentine's Day is wonderful!!!

Sunday, February 12, 2012

Musings on an inpatient hospital stay with a toddler

Our nurse today said that toddlers are the terrorists of the hospital - they want what they want, they're not afraid to make demands, they take no hostages and they absolutely will not be reasoned with, but because they're cute, they keep letting them in. ;-) And to that I say "amen, sista." But more on that in a sec.

First up, an update on this little guy.

He definitely had an interesting day. After his 2nd dose of Amiodarone spit all over me and everyone in a 10 mile vicinity (and this stuff is GROSS - I mean, like the baby wipes don't even touch it kind of sticky) yesterday, I turned to our nurse and said "enough. Find another way to get this med in. Call the pharmacy please and see if we can get it in a tablet form that we can crush and mix with his other meds." Because this med is gross and of epic proportions (for you med junkies out there, it was a 12ml dose - yes, you read that right. It was the equivalent of 1 1/2 times all of his current meds added together. I don't think he'd have taken that much of a med that tasted like Hershey syrup, but it definitely wasn't happening with something that, in addition to being astronomically large, tasted disgusting apparently. Just wasn't happening.

After a little sweet talking (with the pharmacy to agree that we could cut the 100mg dose in 1/2 safely and the cardiologist/EP to agree that we could drop the dose from 60mg to 50mg for an even dose), we were on our way. So, he finally got his first dose entirely in yesterday afternoon at about 5pm. At the same time, he came off of his Propranolol, the beta blocker he's been on since August. We figured the real test wouldn't be whether he had problems coming of Propranolol, since it clearly wasn't working - the issue would be coming onto the Amiodarone. As Dusk said "yeah, it'll be like coming off sugar water."

Well, sadly for us, that's not exactly how it went down. At about 8am this morning, as Bodie was hugging his night nurse goodbye (she was AMAZING), his heart rate shot up, out of nowhere, from his baseline 80-90 to 210...and proceeded to sit over 200 for the better part of the day. Awesome. Truthfully, I hadn't seen it that high since he had his first EAT episode last August, when they decided to put him on Propranolol. 

Although it was pretty unsettling for us (and VERY nerve-wracking for his nurses), Bodie didn't seem particularly upset by it, nor were the cardiologists. They kinda figured it's what we'd expect to happen since the Propranolol is now out of his system, but the Amiodarone, with a MUCH longer half-life, hasn't built up yet. So, they really have 2 theories - (i) the Amiodarone just needs time to build up (it takes a good 2-3 weeks to get fully loaded with it) and that's why he had the episode today, or (ii) he just might be a kid who needs both Propranolol and Amiodarone. In the interest of not keeping us in the hospital 2-3 weeks to figure out which theory pans out, they opted for #2 and restarted his Propranolol on a lower dose. Within 30 minutes of receiving the Propranolol, he dropped out of EAT and has stayed in normal sinus rhythm since. Looks like it was a good call by the cards. :-)

So we're not sure where that leaves us at the moment in terms of discharge. Hopefully Bodie can behave himself and we can be convinced the combo of the drugs is working and we can be home within the next few days. But you never know with Bodie. If you could please pray that the EAT episodes get under control so we can go HOME, I'd really appreciate it!

And speaking of Bodie behaving himself, I have to say that being in the hospital with a toddler is a bit mind-numbing. A few observations I'd love to share with you on being inpatient with a toddler:

1. A toddler's attention span lasts approximately 15 seconds. When you're at home and he has a multitude of toys to play with, it's not that noticeable. But then you're locked in a small room with a limited number of toys, it becomes readily apparent.

2. One would think there would be upper limit on the number of times a Veggie Tales song could be played in a 24-hour period, but if one was talking about "The Water Buffalo Song," one would be sadly mistaken.

3. Toddler rules of "if I see it or have ever thought about seeing it, it's mine" still apply, even in a hospital setting - even if said item is another child's wagon currently housing said child's blankets and oxygen tank.

4. What constitutes "dinner" is directly proportional to how badly you want your toddler to eat. When your child has been in EAT and not eaten anything all day, 2 chocolate hearts, a handful of nuts and a sip of apple juice definitely constitutes a meal.

5. It is best not to tell your toddler any rules of the hospital, for as soon as a toddler hears of the rules, he will want to break them as soon as possible. Case in point: the ONLY time we are supposed to stay in our room is 7-7:30am and 7-7:30pm to ensure patient confidentiality during shift change. So, of course, Bodie deemed that THE perfect time to run out in the hallway in front of the charge nurse's station in nothing but a shirt, diaper and socks, yell "dance! Dance!" and start dancing in a circle as fast as he could.

6. The playroom is never open when you need it (who needs a playroom to be open on a Sunday? What do you mean, kids get antsy on Sunday, too? Phsh) - and the playroom coordinator, when asked if you can borrow puzzles for your 23 month old boy, will most certainly drop off puzzles of this variety, with many, many interlocking pieces with no discernible way of knowing what pieces go where.

For real? It took ME 20 minutes to do the darn things!

All jokes aside, it is tough to be here with a VERY mobile and VERY energetic toddler. It is hard to keep up with him when he just wants to constantly explore his environment and gets bored very easily. But the reality is that we knew when we decided to give our son life that we were buying into a life that would necessarily entail hospital visits at one point or another. And hospital visits are never fun. But I can say, honestly, this hospital is amazing. They have done so much to make it accommodating to families (even our night nurses only do vitals at 8 or 9pm and then not again until morning - as long as your child is stable enough for that!). And having all private rooms means that you're not getting woken up for either your own child's vitals - or your neighbor's! It is SO quiet in here. I mean, our door was not opened once between 10pm last night (when I went out to ask for Bodie's nighttime meds) and 6am this morning (when I went out to get coffee). Our room was SILENT - even though we are literally right across from the Nurse's station! It never ceases to astound me how well they've thought this hospital out (well, except for the whole placement of the code blue button!). And, if we're stuck in the hospital, I'll take it with a feisty, determined little boy any day. Praise God that he has the energy to run away from me as quickly as he does!!!

Please keep Bodie in your prayers, that we have no more runs of EAT, that we're home soon and that he has no side effects from any of these drugs Thank you prayer warriors!!!   


Friday, February 10, 2012

Hope for Inpatient Hearts

So, remember my last post where I mentioned Bodie was getting a med change up to deal with his EAT and that med change would require a hospital admission that we were trying to schedule for the last week of the month? Well, Bodie heard that and decided he had other plans. When he had this 3rd tachycardic episode this week as we were taking Sierra to school this morning, we knew something had to be done. So off to CHLA to be admitted we went.

Because the decision to admit was made so last minute, we weren't able to be directly admitted to the floor and had to go through the ER - never fun. But our awesome cardiologist called ahead so they had a bed ready for us when we were done with the ER admission (I didn't realize what a big deal that was until we got there and I mentioned we were going to CV Acute. The nurse looked at me and laughed, saying "oh, honey, there's no way you're getting a bed on CV Acute - they are all full. Sorry." 10 minutes later she came back and said "Oh, I didn't realize that your cardiologist called ahead. They're getting a bed ready for you right now!" Just one more reason we love our cardiologist!!! And to CHLA's credit, as much as going to the ER sucks, we were immediately triaged and into a private ER room within less than 10 minutes, thankfully. They take their cardiac kids seriously here, which I really appreciate.

He zonked out once we got there.
He, of course, was out of EAT by the time we got there (his episodes typically only last 2-3 hours, so we weren't surprised). But once he woke up from his nap, all it took to throw him back into EAT was a bad attempt at an IV placement. :-( His heart rate shot right up to the 190's and stayed in the 180's after that. Poor baby. I told them there would be no more iv attempts unless they were done by an IV nurse. They were really cool about honoring my request and said they'd just do it on the floor. 

Once we got to the floor, Bodie was all smiles, checking everything out and saying hi to some of our favorite nurses. All was well and dandy until I'm sitting on the fold out bed, kind of getting everything situated and he walks over to the other side of the crib. I'm not paying too much attention until I hear an alarm sounding. I saunter over there, thinking he had pressed the call button for the nurse or something like that. It's only when I look up to see doctors and nurses literally sprinting toward our room that I look over at Bodie to realize that he has depressed the code blue button!!! Yes, he really did. I'd like to thank the genius designer of this room who decided to put the code blue button at toddler level...

After the whole code blue fiasco, we got settled in, had dinner and walked the halls for a bit. Here he is goofing off after bath tonight (I LOVE the private rooms, where I can give him a bath!) - I kept telling him NOT to lick the bars (I mean, disgusting, right?) and he was totally pretending to do it here...
They finally got a good IV in tonight, and oddly enough, Bodie was so upset that he kicked himself back out of EAT. Go figure. ;-) After that experience, he's now snoozing peacefully.
They just took vitals at 9pm and told me they would schedule his morning vitals around 5-6am, if I wanted. LOVE how flexible they are being here!!!

So here we are, at least 2 days, if all goes well. The have to monitor Bodie very carefully to make sure his body tolerates the new drug. So far he seems to be doing ok with the first dose. The med they put him on, Amiodarone, is a serious med. It has VERY serious side effects, mostly major compromises to the lungs, liver and thyroid, not to mention photo sensitivity. Bodie kinda seems like the poster child for who you DON'T want on this med - he has lung issues already, I have a thyroid issue, with Fontan kids you always have to worry about the liver anyway - oh, and he's a flipping Toehead. Fantastic. BUT, it's sort of our best option. The other med they were considering is Flecainaide, which isn't that great for single ventricle kids, can cause decreased heart function and a slightly greater risk of serious arrythmias.  So there you have it. With cardiac kids, you often are making the choice between the lesser of 2 evils, because there are so many non-negotiables when it comes to their care. The reality is that Bodie needs a med that will get this tachycardia in check. Amiodarone seems to be our best option at the moment.

BUT WE ARE SCARED. Frankly, the possible side effects scare the living daylights out of us. The doctors tell us the side effects we're most worried about (lungs/liver) are actually quite rare in kids receiving the smaller dosages like what Bodie will be getting (and they did baseline bloodword today - general cbc plus liver and thyroid tests). But, of course, if your child falls in the minority, it is of little comfort that he "shouldn't have" had a problem with the med. SO, please, please, please, we implore all of our faithful blog followers to intercede on Bodie's behalf, and ask God to protect Bodie from the side-effects of this drug. Please pray that Bodie will tolerate the new drug, his EAT will stop and he'll be able to come off the drug soon (it's not really a long-term drug - Bodie's Electrophysiologist anticipates that he will be on it no longer than 6 months). So please keep him in your prayers.

And, while you're at it, if you could ask for an uneventful hospital stay so that we can be home in time for Bodie's birthday next week, that'd be great as well!

Tuesday, February 7, 2012

BIG Plans for CHD Awareness Week

Today marks the first day of CHD Awareness Week (February 7-14), the week where the focus is on our special CHD babies. I had BIG plans for what to put on my blog. Well, to be honest, I had plans to make plans to do something big. But I never got past the plans to make plans. Ugh. Honestly, life is just a little crazy right now. I'm in one of those seasons where I find myself saying on a regular basis "Just keep swimming. Just keep swimming." I'm swimming in half done projects. I'm overcomitted and overscheduled and overwhelmed at the moment. So, I'm scrapping the big plans. I will have a special post about HOPE for our CHD babies one day this week. Or at least I plan to. :-) So stay tuned for that.

In the meantime, I do want to share this. The picture is graphic, so be prepared (just skip over it if you have a weak stomach for medical stuff!). And I've never shown the picture on the left on the blog before. Yes, Bodie has his chest open in the picture. As is typical, he came back from the Norwood surgery with his chest open, covered in some sort of sterile saran-wrap style covering in order to allow swelling of the chest cavity. It is impossible to explain what it is like as a parent, to literally look down and see your child's heart beating in his chest cavity. I know it's heavy, but what we as heart parents go through needs to be shown. I don't want to sugar coat it. It's easy to look at Bodie now and think he's just like any other kid and sort of forget everything he's been through. Or to talk about what he went through casually, like it happened to some other kid.

But he did live through it. He has lived through 3 open  heart surgeries, 2 cardiac catheterizations, a bout with C-Diff and Paraflu at the same time, and medically resistant staph in his bloodstream. He has coded twice, requiring chest compressions one of those times. We have been told to call family before, because the doctors truly had no idea whether Bodie would make it through the night. By the grace of God, he is doing well now, yes - and we could not possibly be more grateful for that. But let's never forget how valiantly our little hero has fought to be here, doing well now. So, we're celebrating CHD Awareness week by posting this picture, and spreading awareness everywhere for CHD's. Showing what these little guys have to go through. And just how far they can come. Our son is a walking, living, breathing miracle and a testament to God's saving grace.

In addition, we're celebrating CHD Awareness Week (and Heart month) Bennett style, with at least 2 planned cardiac hospital admissions before the month is out. Yep, you read that right. ICK.

First up, Daddy. You may remember here, when I blogged last August about Dusk failing a stress test and he and Bodie having holter monitors at the same time. Well, Dusk's cardiologist ultimately recommended an ICD (a defibrillator/pacemaker). After a second opinion at USC (he's currently treated at UCLA) that was basically the same, we finally scheduled the surgery. So he's scheduled for Tuesday, February 21st. It should be a quick admission, in Tuesday and out Wednesday, but you never know. Thankfully, Popo Alan and Grandma Jan are coming out for Bodie's birthday party the weekend before and graciously rescheduled their return flight home to stay a few extra days and watch the kids for us the day of Dusk's surgery. THANK YOU!

Next up, Bodie. In the same blog entry I linked to above, I talked about Bodie's EAT (tachycardia, where his resting heart jumps from his usual 80-90 beats per minute to 150-170 beats per minute). We've been battling frequent EAT episodes since last August (thanks to the awesome full body rash/rever/pinkeye/ear infection combo that I'm still convinced he caught from the pigs at the Mid State Fair - to be clear, I'm not exactly blaming the pigs, though I do think that's where he caught it - truly, it's not their fault that Bodie was practically laying on top of them). My theory is that whatever he caught in August triggered a dormant EAT node of some sort. Anyway, we've been continually increasing his beta blocker, Propranolol, to hopefully reduce the episodes. Although it has helped in terms of duration of each episode (they're now 2-3 hours, instead of 36-48), the frequency has really been all over the place. He had 6 episodes in January alone. :-( Finally, we decided enough is enough and his card put a call into his Electrophysiologist and they put their heads together to come up with a different game plan. Although the EAT doesn't necessarily present any imminent danger to Bodie, long-term it doesn't do his heart any good, that's for sure. And the name of the game for us is maintaing his left ventricular function as long as possible. So, something needed to be done.

The solution? Try a different med. YAY! So excited to discover there is something else we can try that might work better for him. The downside (and it's a big one)? 3 days in the hospital during cold, flu and RSV season. ICK. It's pretty scary thinking about having a cardiac kid in the hospital this time of year, but truly, we can't put this off any longer. We don't have it scheduled yet, but we're trying to schedule it for the week after Dusk's surgery. We'll certainly update when we do have dates.

You know the Bennetts like to go big, and CHD Awareness Week and Heart Month are no exception, apparently. What better way to raise awareness about cardiac defects than by an inpatient hospital stay? You can't say our family isn't doing our part to raise awareness! gotta do what you gotta do. We do covet your prayers as we approach the next few weeks, for a smooth surgery for Dusk and an eventfree hospital stay and a drug that works for Bodie. (And if any of you are near CHLA and want to come visit Bodie and I while we're there, we'd welcome a visit - since CHLA won't let visitors in under the age of 18 at the moment (siblings included - boo), I imagine we'll be bored out of our minds. :-)

And speaking of Bodie, have I mentioned that he's almost 2? He apparently missed the "almost" part of that, because the terrible 2's have definitely started. Think I'm exaggerating? I assure you not. Here's just a sampling of what I've been treated to in the past week:

No Way Jose
(Bodie rummaging around in my closet.).
Me: Bodie, get out of my closet please.
Bodie: NO.
Me: Get out of my closet NOW.
Bodie: No way Jose!!!
Me: Did you just say what I thought you said?!? Did you just say "No Way Jose?" (I had never heard him say this before)
Bodie: Yea
Me: You do NOT say "No Way Jose" to your mother!
Bodie: (pauses a minute and then looks up at me, all fiery determination) "NO WAY JOSE, MOMMY DADDY!!!"

Bodie Do
Bodie had a head-down on the floor, screaming fit for 2 minutes yesterday because he wanted to take his socks off all by himself ("Bodie Do! Bodie Do!") but yet is not physically able to take said socks off himself. This scenario is repeated approximately 9,999,999 times a day, with socks, pants, shorts, shoes and sweatshirt. Fun times.

Potty Time
Bodie started potty training himself last week, totally out of the blue. Utter craziness. Today, sitting on the potty...
Me: (noticing he had been sitting for awhile and the bowl was still empty) Bodie, where's the pee pee?"
Bodie: I dunno (yes, seriously, his newest phrase is "I dunno" - I thought I had a good 11 years before hearing that one)...walking?
Me: Your pee pee went for a walk?
Bodie: Yes.
Me: Where?
Bodie: I dunno (thinks about it for a minute)!!!

Home Depot
This kid is OBSESSED with Home Depot. Doesn't matter where we are or what we're doing, if you ask him what he wants to do  next, the answer is ALWAYS "Home Depot!" And he literally jumps out of the carseat every time we drive past our Home Depot (on the way to therapy and TWISP, so we literally drive by it 8 times a week), screaming "HOME DEPOT!!! MAMA! MAMA! MAMA! HOME DEPOOOOOOOOOOOT!"

Does this one really need any explanation? I hear this 100 times a day. Basically, anything that he sees, thinks about seeing, has ever seen (or even imagined seeing) or wants to see at some point is HIS. Doesn't matter whether it's my car keys (which, sadly, he has just discovered, can make the horn go crazy at the press of a button), my water bottle, Sierra's dolly or Dusk's golf balls. Fun times.

Anytime I call his name, his first response is always "WHAAAAAAAAT?" The attitude dripping off of it is really quite indescribable. :-)

Life with a 2 year old - ain't it grand? That's ok - as long as he keeps giving me hugs, kisses and snuggles, I'll take all of the abuse any day. Love our little warrior! Oh, and Happy CHD Awareness Week!

Friday, February 3, 2012

Project 52.6. Relief...and Kindergarten Roundup

After a lot of thought and prayerful consideration, we're really excited about the school we've chosen for Sierra for next year. We weighed a lot of options (including homeschooling, hybrid homeschooling options and several parochial schools in our area) and this school just seems to be the right fit for Sierra, and for our family. It's a really small, very conservative Christian school, a place where we think Sierra will get a quality education steeped in the strong Biblical worldview we're looking for. As you can see, Sierra is thrilled as well (pics taken right after her assessment). I think I might be thrilled to go to school with this kind of scenery as well!
Oh, and it's a uniform school. I don't know whether to be sad or relieved to see these kinds of outfits go by the wayside...
We're so proud of our sweet girl and so excited for the changes ahead for her as she starts her formative school years.