Hope for Baby Bennett

Birthday Blessings

2012-02-18T16:49:00.000-08:00

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!

Happy Birthday to our Warrior

2012-02-16T00:27:00.000-08:00

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!

Happy Hearts Day!

2012-02-14T17:01:00.001-08:00

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!!!

Musings on an inpatient hospital stay with a toddler

2012-02-12T21:45:00.000-08:00

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!!!

Hope for Inpatient Hearts

2012-02-10T23:34:00.000-08:00

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!

BIG Plans for CHD Awareness Week

2012-02-07T22:36:00.000-08:00

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! Sigh...you 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)...shopping!!!

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!"

MIIIIIIIIIIIIIIIIIIINE!

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.

WHAT?

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!

Project 52.6. Relief...and Kindergarten Roundup

2012-02-03T22:47:00.000-08:00

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.

Project 52.5. Flexible...and sunny days

2012-01-29T14:53:00.000-08:00

Seriously, my kids were NOT good nappers from the start. Both of them, for the first year, specialized in the super short nap. Although Sierra was more generous than Bodie and would often nap for a full 45 minutes, Bodie seriously would do 20-25 minute naps. And yes, his last nap before I gave up and said "that's it! We're sleep training!" was 12 minutes. Say wha?!? Fun times, right? But after sleep training and getting a little older, they both developed much more flexible sleep habits, thank goodness! By about 18 months, they had both dropped down to 1 nap and it was at least 90 minutes. And within a month or 2 after that, we stopped having to be so rigid with when we put them down. It is SO freeing now to know that Bodie will go down, really, anytime between 12:30 and 3 or so - and he'll sleep at least 90 minutes. And Sierra still naps (I know, I know - we're super lucky!) and, best of all, they nap at the same time! Praise God!!!

So today, after we got home from church and had lunch and I realized it was waaaaaaaaaaaaay too beautiful outside (80+ degrees!) to make them go down for naps already, we decided to do water play. I pulled out pots and pans, measuring cups and Sierra grabbed the bath toys. They had a blast. And when I put them down at 2:30, Bodie was out before his head hit the crib. ;-) A few more pics from the fun (and, yes, this is January weather - suddenly, living in LA doesn't seem so bad after all!)...

Project 52.4. Sticky...and some Mustang love

2012-01-22T21:30:00.000-08:00

-----------------------------------------------------

This weekend, I took the kids up to see my parents. We have a semi-annual tradition of taking the kids up for a Cal Poly game (football in the Fall, basketball in the Spring). The kids had a BLAST, as they always do.

Bodie discovered a superhuman love for Musty, the Cal Poly mascot (a mustang horse). I mean, he could.not.get.enough of him. Kept running up to him to hug him and then would run back to me and then run back to Musty 5 seconds later. At one point, he ran straight into Musty's arms and just hugged him for at least 30 seconds straight. It was adorable. Well, I mean, we thought it was adorable. Musty may or may not have been trying to make a hasty exit post-game just to get away from Bodie...

Sierra got her share of Mustang love as well, from the Cal Poly cheerleaders. She looked so cute in her Cal Poly cheerleading outfit and the cheerleaders were so sweet, stopping to talk to her. She was in 7th Heaven for sure!

(Isn't she SO cute?!?)

The kids did great all weekend, and probably the most wonderful part is how much Bodie warmed up to my parents. Although he sees them a lot, they sadly fall into the 99.999999% of the world's population known only to Bodie as "not mommy" and attempts to hold him or snuggle him are generally met with disdain and screaming like's on fire. He had started to warm up to my mom when she was in town in November and watched the kids for 2 days while I was at a seminar - but he never willingly went to her when I was in the room and therefore an option. But this weekend, not only did he let my mom hold him, he even let her read him books...

and even let my dad read books...

...if you don't think this is a big deal, trust me, it is. To put it in perspective, the last time he was willing to sit in my dad's lap without screaming like he was on fire, he looked like this...

(October 2010 - 9 months old!)

And he let my dad hold him on the way to Burnardoz (the world's BEST ice cream in the whole world, by the way - it opened up the summer I was born and has always been one of my most favorite places - and also where the pic in this week's Project 52 came from)...

And finally, I just had to include this pic of Bodie - this kids eyelashes and lips are to.die.for. God sure knew what he was doing when he made Bodie - he had to make him extra cute so we'd put up with his extra feistiness! But I tell ya, we're gonna be in trouble with this one...

Broken heart Bodie

2012-01-17T18:01:00.000-08:00

So I walked into the bathroom this evening to discover that one of my children had written in chalk all over the scale. Since only one of my children likes to write on everything except what he is supposed to, my money was on Bodie. Dusk took the scale to Bodie and the following conversation ensued...

Dusk (very sternly), pointing at the scale: "Bodie, did you do this?"

Bodie: nods his head

Dusk: "Noooooo, Bodie - that's NAUGHTY! We don't write on scales!!!!"

Bodie: (melodramatically patting his chest) "Broken...heart...Bodie!!!"

Seriously, this kid is too much for me. Apparently, at 23 months old, he thinks it's an excuse to get out of discipline. Fantastic.

Can't make this stuff up folks. :-)

Bodie with his masterpiece...

Project 52.3. Genetic

2012-01-15T14:59:00.000-08:00

Operation Breakup

2012-01-13T00:37:00.000-08:00

So, I may have mentioned once, or twice, or, I don't know, 800 times, on this blog that Bodie is a tad clingy. Think I'm exaggerating? I most assuredly am not. Example:

When we have family prayer time at night, Bodie HAS to be right next to me - Dusk and I joke that, if he could, Bodie would crawl back inside just to make sure no one else could be closer to me. I think it sorta falls in the "if I can't have her, no one can" mentality.
He pantses me at least once a day because I won't pick him up in a timely manner - typically when my hands are otherwise occupied making dinner and he wants to be held RIGHT THEN. I mean, we're talking, he pulls my pants all the way down to my ankles.
If you ask him what he wants for breakfast, or lunch, or dinner - or what toy he wants to play with, his answer is almost always "mama."
If I lock the door to the bathroom while taking a shower, thereby preventing him from coming in to check on me (and let the cold air in) approximately every 30 seconds or so during my shower, he loses it. Full on screaming meltdown outside the bathroom door - even if daddy is home and trying to play with him. Apparently the fact that I have never gone into the bathroom and not come out hasn't persuaded him that there's not some sort of secret exit out the other side.

Dusk calls it an issue of codependence. Sadly, I have to agree. The irony is that I was worried that the fact that I didn't hold him for the first week of his life might inhibit his ability to bond with me somehow. Fat chance.

As funny as all of this sounds, it's actually pretty frustrating. Although we have made GREAT progress in him being able to tolerate babysitters and his therapists and not care so much when I'm not around, when it's just us at home, he really thinks he needs to be the center of my universe AT.ALL.TIMES. The problem is, HE'S NOT. I do have another child who I desperately want to spend time with and focus on - and who deserves that time. And while Dusk and I both get a good deal of time with both kids, neither of us get enough time to just focus on Sierra and let her be the absolute center of attention. Because Bodie is on the high-maintenance side (he's VERY fun, but when he's upset, forget about it - the whole world has to stop and solve his problem, even if that problem is trying to put a sock on or put all of his cars in his hands at once), it's hard to give Sierra that attention when he's around. So...daddy and I have come up with a plan, called "Sierra Mommy/Daddy Date Night" also known as "Operation Bodie/Mommy Breakup."

So, on Wednesday nights, Sierra gets "date night" with either Dusk or I - we alternate weeks. And whoever doesn't go on the date with her ~~gets stuck with~~ gets to spend the evening with Bodie. We've only done it 3 weeks so far, but it's really been fun. It's so great for Sierra to get some really good one-on-one time with each of us - and it's great for Bodie to learn to be ok with daddy doing things as well. It's a process, but truthfully, we need to set some more ground rules so that Bodie doesn't completely rule the house. I mean, he's a cute kid, but we really need to bring a more balanced parenting approach back to the home, where Sierra gets to be the focus as well.

Last week for our date, Sierra and I went and got pedicures and then ate at HomeTown Buffet. Fantastic, I thought! I love HomeTown Buffet and hadn't eaten there in probably 10 years, since Dusk won't touch it with a 10 foot pole! My observations on Sierra's and my first date night:

HomeTown Buffet is gross. I mean, really disgusting. How did I remember it being so good? Apparently, absence makes the heart grow fonder. The people at the table next to me were talking about how "amazing" the food was - I kept trying to sneak a glance at the food they had, thinking perhaps there was a secret stash of "amazing" food somewhere I hadn't seen.
Sadly, Sierra LOVED HomeTown Buffet and has asked almost every day to go there soon. Uh...this might have been one of those ideas that backfired on me!
The time we spent together was absolutely priceless. I LOVED being able to focus on her alone. We talked, we played MASH, we laughed and just focused on her.
I cannot wait for our next date night!!! Rumor has it that Beauty and the Beast is out on 3D, so that's on our agenda!

From the Mouths of Babes

2012-01-08T22:49:00.000-08:00

Every night, before bed, we have "Family Time," where the 4 of us sit, talk about our highs and lows of the day (Bodie hasn't quite got the hang of highs and lows yet - during this time, he typically just points to various body parts and shouts out their names) and then we pray. This past week, I was able to capture both kids saying their bedtime prayers. I never want to forget these sweet moments.

Bodie

(he typically bows his head and folds his hands, but for whatever reason (maybe because, uh, a video camera was shoved in his face), he decided not to this night)

Sierra

(if you don't "speak Sierra," she thanks Jesus for mommy, daddy and ladybugs, and then asks Him to make Bodie's nose stop running (amen, sista!), and help him not have any more Synergis shots (nasty shots Bodie has to get monthly during RSV season - he HATES them), for his surgeon (Dr. Starnes) and that his heart could feel better.

Project 52.2. Negotiable

2012-01-08T20:48:00.000-08:00

Project 52:1. A blur

2012-01-04T15:10:00.000-08:00

I'm so excited! I've decided to do a Project 52 this year. I've seen several in cyber-world (see the awesome one at Styleberry or the cutest kid ever (and also my future son-in-law, in case you're wondering) at for an example), and I thought it would be fun to participate and to have to look back on at the end of the year. The way a Project 52 works, you pick a theme and document it throughout the year, selecting a picture and a little note about it for each week. Then, you can turn it into a Coffee Table book at the end of the year. Cool, right? The theme I'm documenting this year is Motherhood.

My goal is to do one a week (hence, the "52" in the title). Here goes!

Life with a Cranky Kid

2011-12-30T09:32:00.000-08:00

So we may have mentioned once or twice, but Bodie has a tendency to be a bit of a crankster. He pretty much wears his 1/2 a heart on his sleeve for all to see. When he's happy, he's BEYOND happy - more fun than any kid I've ever been around. Just a total goofball. But when he's unhappy, oh.my.goodness. The whole world must stop and cater to him until his problem is taken care of. As one of this therapists put it a few weeks ago, when talking about Bodie's quiet cry due to his vocal cord issue, "what he lacks in volume, he makes up for in emotion." (I hear this is not uncommon in little boys, but Bodie does seem to take it to the extreme.) So, in honor of our little crankypants (and because Daddy is occasionally known as a bit of a crankypants himself (some have said he's an "old man" already - tee hee)), I made Dusk this desk calendar for Christmas this year. Enjoy a look back at Mr. Crankypants (you can click on any of the pictures to enlarge them)...

Oh, and if you're keeping count of our "Christmas sickies," you can add 2 more - my sister-in-law came down with the stomach flu and I started antibiotics yesterday for a sinus infection. Fun times!

Merry Freakin' Christmas

2011-12-28T21:05:00.000-08:00

So, in addition to Christmas presents and family memories, this year, we decided to spread the love via shared germs as well - BOTH in the form of the nasty splitting head cold and throwing your guts up stomach flu variety. Sounds fun, right? Super. Our family brought some cold germs, my brother's family brought some cold germs and my mom decided to throw some flu germs on top. The count so far is 4 massive head colds, 4 ear infections and 5 stomach flu survivors (and it's only a starting pool of 6 adults and 3 kids!). It was a regular ole petri dish of holiday fun.

Seriously, the everyone getting sick part wasn't too great, but otherwise, it was a super fun vacation. And I couldn't help but breathe a sigh of relief more than once that Bodie is no longer "interstage" (pre-Glenn) where either a cold or flu would send him to the hospital, or worse. Thankfully, at this point, he's stable enough that other than a ridiculous amount of crankiness, he tends to tolerate illness pretty well. And we snapped a lot of great pics around the swarm of germs...

Our whole family at our traditional Christmas Eve lunch at the Madonna Inn (the best Black Forest cake on the planet!!!)

The kids at the Christmas Eve candlelight service...

This is what my sweet angelic 18 month old nephew Michael did during most of the service. When he did wake up, he sat quietly on my sister-in-law's lap, gently playing with the pretend candles - seriously could not have been cuter...

Meanwhile, this is what my kids did...

notice what they're doing with the "candles"?

Sierra's putting hers in her ear...

And Bodie's went straight into his mouth, and then, in his ears, up his nose, in his hair and on his head fashioned as horns - honestly, kinda appropriate given how he was behaving! ;-)

He was also tearing apart all of the paper he could find and screaming "BARBARA! BARBARA!" at my mom's best friend, who he could see singing in the choir at the front of the church (again, thank goodness for only 1 working vocal cord!). He was such a typical toddler boy - all I could think was how grateful I was that almost everyone in that church had been praying for Bodie for so long that they probably were willing to give him some extra grace when it came to those kind of antics...I hope.

We snapped a pic of the kids after the service. I love this pic because it so captures their personalities perfectly - Sierra, more or less trying to be well behaved, Michael innocently standing there doing what he's supposed to be doing...and then Bodie. Man this kid is a bull in a china shop. Enough said.

A family pic after the service (and no, I have no idea why Sierra is lifting her dress over her head).

Christmas morning. Ear infection had set in pretty bad for Bodie at that point, so he definitely had his crankier moments, but overall, he had A LOT more fun than last year, thankfully! His favorite gift was probably this one - a HUGE Mickey Mouse from my parents (Bodie is obsessed with Mickey Mouse and Elmo these days)...

He LOVED it.

Sierra's favorite present was this doll set - we literally got it for $10 at Walmart on Black Friday. An "older sister" doll and a baby doll. Best $10 we ever spent.

The day after Christmas, we took the kids to the dunes by my parents house - how AWESOME is this???

Sierra LOVED it. Just ran and dove everywhere in the sand.

And, surprisingly, Bodie really liked it, too.

Can't you tell? Haha! No really, he did - he was a little apprehensive at first, but once he got used to the colder sand, he took to it, rolling and running everywhere. He's Bodie - and it was a chance to get really really dirty - enough said.

All in all, even with the germs spread around, we had a GREAT Christmas. A wonderful chance to get together with loved ones and celebrate Christ's birth and His love for us. And to revel in the miracle of both of our children as well. Hope you and your family had a blessed Christmas as well!

The Opening Act

2011-12-20T21:15:00.000-08:00

4 years ago, we were thrown into the craziness known as hospital life. Our sweet 8 month-old baby girl was sick, so very, very sick. She had been running raging fevers and crying for hours on end for almost a week (unlike Bodie, who, let's just say, tends toward the cranky side of the spectrum, Sierra was a HAPPY baby, so we knew immediately something was wrong). She would fall asleep in my arms and the second anything woke her up, she'd be crying in agony again. The doctors knew something was very wrong, but couldn't quite figure it out. In a matter of 4 days, they had run multiple blood tests, done a spinal tap, a chest x-ray and an abdominal x-ray. All that showed up was a significantly elevated white blood cell count.

Then, on December 21st, Sierra's pediatrician finally gave up. She had us admitted to the hospital for an MRI and said we weren't going home until we figured out what was wrong. Sweet baby girl was so sick she didn't even need to be sedated for the MRI. She just lay there quietly while I recited "Moo, Baa, Lalala" over and over again in her ear. 2 hours later, we had our answer - pnuemonia throughout her entire right lung. They were baffled as to how she had managed to sound totally clear and not have any breathing issues and were amazed it had not spread. They started agressive IV antibiotics, but her fever continued to rage. By the next day, they realized why - the pneumonia was caused by staph, probably MRSA, given the magnitude of her illness. They brought out the big guns then, the crazy, icky IV antibiotics that blow your veins out and require new placements of IV's every day or 2. (Have to say, with what I know how, I'd have insisted on a picc line, but what can I say - I didn't know what I didn't know then.)

Within a couple of days, her fever broke and a day after that, she was 100% back to herself. But they kept us as long as they could, to run the longest course of IV antibiotics that they could, basically, until all of her accessible veins were blown. And so, 9 days later, they sent us home on oral antibiotics and we had to quarantine her for another 10 days.

If you're counting, she was in the hospital December 21 through the 30th. Her first Christmas was spent in the hospital. :-( We walked into the hospital with all of the anticipation of Christmas in the air - and walked out to decorations all having been put away. Although my parents and brother, bless their hearts, brought Christmas to us in the hospital, Christmas truly sort of passed us by. Of course, this feeling would become second nature with Bodie, who spent almost every holiday between Valentine's Day and Labor Day of his first year in the hospital, but I'd never experienced it before. It was the oddest feeling.

We were blessed to get home in time for New Year's Eve (just in time to catch food poisoning from the pie we ate on New Year's Eve, actually - ah, fun times! Way to ring in 2008!). The whole experience was truly petrifying, not only for Sierra (who developed an apparently lifelong aversion to oral medicine as a result), but also for me (who walked in with Sierra and didn't leave the hospital until she was discharged) and Dusk (who wasn't allowed to stay overnight in the hospital, except on Christmas Eve - due to a ridiculous 1-parent rule). We were so scared we'd never get our little girl back. Praise God we did and she was totally fine - hasn't had a reoccurence (although we had been warned it might happen) and has been so healthy since then. But at the time, it was so frightening. We thought it was the worst thing any parent could go through.

Turns out, she was just the opening act. Sibling rivalry runs deep in our family apparently.

The fashion police

2011-12-19T13:12:00.000-08:00

So, Sierra's always been known for her "unique" sense of style.

So, when Bodie came out with boy parts, I breathed a huge sigh of relief that the crazy (read: embarassing to mommy and daddy) dressing days were over. Clearly, I was delusional.

Now that he can and does pick out his own clothing, it is generally variations on the above outfit - 1 of his 3 monkey shirts, swim trunks (yes, swim trunks - EVERY.SINGLE.DAY), either a whistle or a beads around his neck and legwarmers (our general rule with the kids has always been that if you want to express yourself through clothing, that's totally fine as long as (1) you're not showing too much skin and (2) it's weather appropriate - so the end result is that we have a rather prolific use of Babylegs legwarmers in our household). His therapists tell me he's the most fashionable one at TWISPP. But I know - that's just a nice way of saying "wow, what a weirdo!" It's ok - we love him anyway. :-)

Grateful Hearts

2011-11-26T17:35:00.001-08:00

Top 10 Things the Bennetts are Grateful for this Thanksgiving

1. NO one throwing up! (If you need to know why we're specifically grateful for this, look here).

2. A ridiculously inquisitive little boy, who just wants to know how everything works.

3. Living somewhere warm enough the snowmen shirts almost always go with shorts.

4.Multitasking mamas (toddler in arm, backpack on back, older child holding hand, marching down the hiking trail . In the pic, daddy is holding our "other child," our Canon SLR camera - but rest assured, we quickly did some switching around!)

5. NOT being in the hospital! (We spent Sierra's first Christmas (and the 4 days before and 5 days after) as well as all but one holiday between Valentine's Day and Labor Day of Bodie's first year in the hospital!)

6. An independent little boy who just wants "WALKING" all.by.himself.all.the.time.

7. Enough said. ADORABLE face.

8. Brand spanking new Christmas jammies (Bennett family tradition: new Christmas jammies and watching A Christmas Story on Thanksgiving night - hello holidays!).

9. 2 HAPPY AND HEALTHY kiddos!

10. A loving God who made this beautiful creation for us to enjoy!

(all these hiking pics were taken in palm Springs - who knew there was this much beauty here???)

Happy Thankgiving from our family to yours!!!

November already???

2011-11-15T14:08:00.000-08:00

Ok world, here I am...

I have been meaning to update the blog for a couple of weeks now, but oh my, our lives have been SO busy! Good busy - I suppose it's that time of year, right? But definitely busy! Here's a little of what we've been up to...

Cardiology

Bodie had his regular appointment with his cardiologist yesterday and got a great report! YAY! HUGE sigh of relief for me! He has been having frequent episodes of tachycardia ever since the crazy fever/full body rash virus that landed him in the hospital in August. He used to have episodes of EAT as an infant, and had been on Propranalol (a beta blocker designed to bring his heartrate down) for it, but had been off the Propranalol for almost 9 months without any real issue before August. Since then, he's had 8 episodes that we know of (I know because he gets blue and really panty - and then I can confirm by putting my ear against his chest and listening, or just putting him on pulse ox). He was put back on Propranalol in August, but a very low dose. It was upped a tiny bit in September when we realized he was having another episode. It definitely helped with the duration of the episodes (now, instead of lasting a day and a half, they're just a few hours at most), but didn't seem to help with the frequency. You can imagine a heart that's used to beating at 90-100 beats a minute is not going to like being repeatedly thrown into 160-180 beats a minute. I was really concerned his heart function took a hit because of it. But thank God, that wasn't the case!!! His function looked better than it did in August and he has no concerning regurgitation in any of his valves. His cardiologist is upping his Propranalol by a fair amount to hopefully get the EAT under control, but other than that had no concerns! We're still on track for a Summer 2013 (!!!) Fontan, unless Bodie has other plans. The only other interesting note was that Bodie was so squirmy during the echo, the echo tech literally had to do part of the echo with Bodie standing up trying to reach the animals hanging off the ceiling! We were totally cracking up at him...

Other than that, we've been up to...

Talking a mile a minute

Oh.my.goodness can this kid TALK. He's stringing together 2 word sentences more and more, which is really fun. The other day, he pointed at this picture (hanging on our wall)

and said "Baby Cry" (like that's not the understatement of the century, right?) And...he can now say his own name! Click on this video to see him in action:

He also figured out how to unlock all of our babylocks in the kitchen cabinets. We're not talking he pulled with brute force and got the cabinets open (which is what Sierra finally did at 3). We're talking the stinking kid watched me do it, reached his little arm up and over the top of the cabinet, depressed the child safety latch and opened the cabinet. I was dumbfounded. I SO have my work cut out for me with this kid!

Milestones

We've been doing more homeschooling with Sierra on the days she's not at school and she's really getting into it. We've been working really hard on her letters, which, let's just say, needed some serious work a few weeks ago. This is after only a couple of weeks of working hard on them:

Can you say I am one PROUD mama???

She's also started taking pics with my camera. I know, I am nutso to let my 4-year old anywhere near my beloved Canon SLR. But she's having fun. She took this pic of Bodie and I in bed the other morning - I just love Bodie's expression. He knows this whole sissy-getting-her-hands-on-the-camera thing is not going to end well. Ha.

In Bodie milestone news, he is LOVING the TWISP program and absolutely flourishing. Most days he can't even be bothered to say "bye bye" to me and give me a hug or kiss because he's already into playing with the cars and trucks. SO grateful for the program.

Oh, and he tried his first juice box last weekend. Not because I'm a good mom and have been denying him juice, but because Sierra's really never been much of a juice drinker, so we just don't have it around the house. Not that you can tell from this pic, but he totally dug it. Honest!

Crafts, Crafts and More Crafts

In conjunction with her school's letter of the week, we've been working on letter crafts at home. I posted about this on Facebook, but for those of you who have preschoolers, DLTK Teach is THE BEST craft site I've found. The letter curriculum is fantastic! The projects are super easy and fun. Last week, for the letter H we made a Habitat - Bodie painted the sky and Sierra painted the forest walls and floor:

(Please ignore Bodie's pink shirt - it's Sierra's "paint shirt" and she didn't want to wear it - since I knew he'd be painting, I figured why ruin another shirt when he could just wear hers?).

This week, for the letter I, we made an Igloo out of a styrafoam cup and plate, marshmallows and white frosting.

(I'll let you guess whose is whose. ;-))

Holidays

Wow, I cannot believe Christmas is already around the corner! This year, we're planning on doing a RACK Advent Calendar (25 days of Random Acts of Christmas Kindness). I'm super excited to do it and can't wait to show Sierra what Christmas is all about. Stay tuned! In the meantime, here's a sneak peak at our family Christmas pic (pretty good for a camera set on auto-timer since we couldn't find a neighbor home to help us out! Ha!)

Halloween Happenings

2011-11-03T15:41:00.000-07:00

Happy Halloween!

We had a great Halloween weekend! Dusk carved pumpkins with the kids on Saturday, we went to a fun Harvest Party with our new church on Sunday and then both kids trick or treated with Bodie's new TWISSP class on Monday morning - all 20 or so kids in the program went to the local businesses in the complex where the therapy center is located. It was one of the neatest experiences - the merchants were SO excited (apparently, this is the second or third year they've done it and everyone really looks forward to it). Have to say it was one of the cutest things I've seen in a long time.

(The funniest moment was probably when they got to a police supplier of some sort (lots of shirts, hats, equipment, etc. inside and police cars outside - Bodie ran in and started pointing and yelling "BAD GUY!" at everything in sight. It was fairly embarassing as I was trying to explain to him that no, police officers were the "Good guys" (not sure where he got the good guy/bad guy concept from, honestly) - but everyone got a kick out of it!)

Then, we stopped by Sierra's school to check out all of her little friends in their costumes - so adorable. And Dusk took the kids out trick or treating on Monday night. Dusk said Bodie did great - totally got the concept of walking up to the houses, putting the candy in his little basket and then saying "tank ooh". Apparently, he was quite the charmer. A far cry from last year, when we held him the whole time. :-)

Here's some pics of the festivities...

As you can see, Bodie was a HUGE fan of the whole pumpkin carving process...Ha...

Hey look - another picture of Bodie crying! Gotta love the lower lip pout - this kid, I tell ya (not sure exactly why he was losing his cookies here - I think probably because we weren't doing EXACTLY what he wanted to be doing at that moment in time - as an aside, I often find myself thinking that when Bodie was a newborn and I leaned over his isolette and told him he was going to have fight REALLY hard, perhaps I should have specified that I was referring to his heart defect and not everyone and everything!)...

The kids posing with their pumpkins...

Sierra was adorable as a Cal Poly cheerleader...

Sierra with her bestie, Sofia (who's moving to South Carolina next month - but we're NOT talking about that!!!)

Sierra with our favorite Teacher Juju, who has been an instrumental part of our lives since Sierra started at DRCCC at 4 months old - we love Juju!!!

The kids, right before heading out to go Trick or Treating with Daddy!

Stepping on Up

2011-10-28T10:52:00.000-07:00

Today is a bittersweet day for me. It's Bodie's last day in his Two Steps Program. Next week, he starts in TWISPP. Let me back up a minute, since most of you (ok, probably everyone but Dusk and my mom) have no idea what that means.

Bodie has been receiving Early Intervention Services through our Regional Center since he was 10 months old. Initially it included Physical Therapy twice a week (for significant gross motor delays due to all of his hospitalizations early on) and Occupational Therapy once a week (for feeding issues related to his vocal cord paresis and difficulty transitioning to solid food). Everything was home-based, which was such a blessing during last year's cold and flu season, when we really didn't want little man getting sick (well, catching anything more than he already caught, which was a fair amount of junk).

After about 6 months of that, they dropped him down to 1 session of PT (at the center), 1 of OT (still at home) and enrolled him in August in a program called "Two Steps." TWO Steps is a graduated therapeutic program designed to prepare children and their families for participation in all facets of society (education, recreation, ADL, wellness). The child to staff ratio is 2:1, there's 5 kids in Bodie's group and Bodie goes 2 mornings a week for 90 minutes. It's sort of like a really abbreviated pre-school (free play, circle time, gym time, snack time, etc.) Technically, Bodie scored too high cognitively to qualify for Two Steps, but his therapists petioned to get him in because they really thought he would benefit from a little separation from me and learning to properly harness his ridiculously high energy levels, sit still, etc. We were really lucky that he qualified and he has just blossomed in the program. It has helped tremendously with his separation anxiety - he no longer even glances in my direction when I leave (for the most part) and generally has a great time. He loves his therapists.

Now that he's mastered that, they tell me he's ready for the next step, TWISPP. TWISPP is a center-based early intervention group program with support from OT, PT, speech and mental health. It is a program for children who are at risk for developmental delays, children with identified disorders and for children who are typically developing. Children range from 18 months to 3 years of age. The child-to-staff ratio is 3:1. The emphasis of this program is on prevention, early intervention, and enrichment in a playful and supportive environment. Think of it like a preschool run by therapists.

So Bodie starts in TWISPP next week 2 mornings a week for 3 hours. He's been approved for 3 days a week, but we're going to start with 2 and see how he does. I'm really excited for him. I suppose it might seem like I'm pushing him -he is, after all, only 20 months and it's a little early to be thinking about preschool. But I really think this is going to be SO good for him. He's such a social kid and clearly needs the exposure to other children, both on a social and developmental level. Socially, he will love interacting with other kids. And developmentally, I think it will be great for him to be around other "typical" kids (which there are a fair amount of in the program as well as kids who have various developmental delays) who can model age appropriate behavior for him. And I LOVE the fact that the whole program is run by therapists! Although Bodie hasn't shown any big red flags for developmental issues at this point (other than the excessive amounts of energy, which could just be typical boy stuff), we do know that he's at-risk for other developmental delays. I like knowing that therapists who are trained in spotting and treating developmental delays run the program. Not to mention that, because it's through our Regional Center, it's free!!!

So, as I said, it's a BIG day for us. I got teary-eyed when I dropped him off this morning - and so did his therapists. Even though TWISPP is literally across the hall from Two Steps, he'll be working with new therapists in a new room. Big changes. Good changes for Bodie. But change, nonetheless. And if you've been reading my blog for very long, you know this mama does NOT do well with change. So, would appreciate a little extra prayer over our whole family this next week, that the transition goes smoothly (and that I can get both kids to school/therapy on time, now that they have to be 2 different places at the same time!) and that Bodie thrives in TWISPP as he has in Two Steps.

Oh, and in completely unrelated news, the ENT was able to find Bodie's "missing" ear tube! Last week, either he or I stuck the thermometer too far into his ear canal, resulting in his ear bleeding literally for 3 days straight. (Oh my word, the ear can bleed (especially for a kid on aspirin)! Who knew?) When the ENT could finally get us in, she confirmed it was in fact not his brain matter leaking out his ears (as Daddy had thought), but probably just a scratch. But the blood and fluid we had seen draining out of the ear probably dislodged whatever was blocking the tube when the pediatrician had been looking. So, the bad news was he hurt his ear- but the good news was that in the process, we found the missing tube!

Gaining some Perspective

2011-10-21T13:00:00.000-07:00

There's an old parable about the power of gratitude, where two poor farmers were walking together and met their Rabbi. Upon being asked "How is it for you?" the first farmer responded "Lousy. Terrible, hard, awful. Not worth getting out of bed for." God was eavesdropping on the conversation and upon hearing this thought "Lousy??? You think your life is lousy now, you ungrateful lout? I'll show you what lousy means." Upon being asked the same question, the second farmer responded "Ah, Rabbi, life is good. God is so gracious, so generous. Each morning when I awaken, I'm so grateful for the gift of another day, for I know, rain or shine, it will unfold in wonder and blessings too bountiful to count. Life is so good." God roared with mighty laughter upon hearing this saying "Good??? You think your life is good now? I'll show you what good is!"

I try very hard to live like the second farmer, focused on the beauty that life brings, and being grateful every day. But I'm only human and I slip - I think my last blog entry was a great example of that. And I'm pretty sure God was thinking "Tough??? You think your life is so tough right now, that you have the luxury of worrying about a surgery a year or two away? Let me give you something else a little more timely to worry about!"

Literally, within hours of hitting "Publish" on my blogpost, Sierra woke up with a 102.5 fever. Completely out of the blue. And here's the thing about Sierra. She's a great kid, but, well, taking medicine is not her thing. She used to be great at taking medicine - until she spent 9 days in the hospital with bacterial pneumonia at 8 months old, and since then, hasn't met a medication she trusts. Anytime I have to give her medication, I am pretty much guaranteed the first (and sometimes second or third) dose will get thrown up on me within seconds of administration. From about the age of 8 months to 3 years, Tylenol suppositories were our fever reducer of choice, for this very reason. But I don't know, it just doesn't seem right to do that to a 4 1/2 year old. So there we sat, on our kitchen floor, hours after posting that blog entry, begging and pleading with a 4 1/2 year old to take 1 1/2 teaspoons of Tylenol. Took her 15 minutes to get 1/2 of it down, before throwing it all up and starting all over again. Fun times. The next 24 hours were spent checking her temperature, stressing about administrating Tylenol and Motrin, administering said meds (through a lot of tears, pleading, threats and throwing up - from just about everyone involved) and trying to keep the poor thing happy...all the while praying Bodie wouldn't catch it.

Her fever broke about 24 hours after it started...just in time for Bodie to get all snotty and start coughing his little lungs out. First real cold of the season. Awesome. And then...yesterday afternoon, his fever started. So we were up all night with him last night, checking his temp, checking his sats, watching his breathing, listening to him whine. He seems to be handling it ok, other than being fairly miserable. Leave it to Bodie to get his sissie's virus on top of the cold he was already brewing. He actually had a well-check scheduled for today anyway, which was ironic since he was anything but well. But we went anyway and his pediatrician said she thought he looked great other than the sad eyes and snotty nose. (As an aside, it was kinda fun to see her jaw hit the floor when she asked how many words he has and I told her about 80! I tell people this kid talks all the time, but no one seems to believe it until I tell them how many words he has!)

And, since God is apparently trying to teach me a lesson about focusing on today's problems instead of worrying about tomorrow, we got some unexpected news at today's appointment. While the tube in his right ear looks fine, the pediatrician couldn't find the left one. Looks like, less than a month of getting it in, it's already fallen out. Boo. (There's always a chance it was just "hiding" but that's pretty unlikely - they're bright blue and there's only so many places they can be, so if she didn't readily see it, it's probably not there.) We kind of had an idea we might be up against this, since it's looking like he inherited my ears, and all 4 sets of temporary tubes I had put in as a kid fell out within a month each, so I ended up with "permanent tubes." We were hoping to avoid that route with Bodie, but we'll see what the ENT says when we see him next week.

So my lesson of the day? Focus on the joys (and troubles) of today - tomorrow will bring enough of its own. And, on that note, here are a few recent pics of the kiddos...

Bodie, upon discovering a squirrel in our front yard...

All proud of himself, after having climbed up on the barstool at the kitchen counter all by himself

Me with the kiddos at the park last week

School pic time!!!

At lunch today - my poor baby...such sad, sick eyes...

The "F" word

2011-10-18T21:17:00.000-07:00

Sigh...it seems it's all I can think about these days. I'm not sure why, but something has triggered it to move from the safe recesses in the back of my brain to the forefront. Any of my followers who have single ventricle kids don't even have to ask - you already know what word I'm talking about. For those of you who aren't, I'm speaking of the Fontan, the "final" stage in the palliative surgical approach to HLHS. I use quotations because for many kids it is truly the final surgery for a very long time and they have years, some even decades, afterwards with no surgical intervention. But for others, it's just the beginning of a different type of path, one that includes further surgeries and sometimes transplants and then rejection fears. The thing is, you kinda don't know which path you'll be on until you get past the Fontan. But in most cases, it is the final "planned" surgery - the route that we knew before Bodie's birth would entail the Norwood, the Bi-Directional Glenn and then the Fontan.

I'm usually really good at pushing Fontan thoughts to the back of my mind. We're in the glorious days of the "normal" Glenn life, where you're so far beyond the Norwood and Glenn you kind of forget what it was like, and you're so far out from the Fontan it seems like an eternity away. So you just kind of live life normally and enjoy life and do normal stuff. And you kinda forget your kid even has such crazy physiology. But then, as you creep closer to the Fontan, you start to remember. Thoughts start to seep in. Doubts start to creep in. And that's where I find myself suddenly.

I'm not sure what is triggering it these days, though I do have a few guesses. Since CHLA prefers to do their Fontans between 2 and 3 years old, we should still be a year, maybe 2 years out from Bodie's Fontan (we're looking at next summer or even Summer 2013 if he can hold out that long). So I shouldn't really be thinking about it yet. But a lot of surgical centers do the Fontan at 18-24 months, so maybe it's that Bodie is in that window that's making me think about it and I'm seeing some of his heart buddies gearing up for their Fontans. The knowledge that, were he at another center, he'd have already had his Fontan by now. Oh.My.Throw up now. Maybe it was watching him try to run around and keep up with Sierra and her friends at the museum this past weekend, where he got so winded and his little lips turned purple from all of the exertion. Maybe it's the rapidly approaching 2nd birthday of sweet angel Travis, a fellow HLHS warrior who unfairly and so tragically lost his fight last spring - the knowledge that, were it not for this stinking disease, he would still be here with us, celebrating his 2nd birthday running around and loving on his mommy and daddy, like he should be. Don't even get me started on the tears that flow when thinking about that incredible kid and his family. Ok, deep breath.

Yeah, I think I know why I seem to be fixated on the "F" word these days.

As moms, we are consummate multitaskers, right? Apparently, that even holds true with regard to our emotions. As I think of the Fontan, I am filled with excitement, that he could be "past" all of the surgeries we always knew were coming, that he would have the stamina to keep up with his peers (the difference between pre-Fontan kids, who, like Bodie, pant going up the steps and whose lips turn purple the second they start to run around, and post-Fontan kids, who can run circles around their peers, is amazing from what I hear). I am filled with gratefulness that, as far as we know, he is a good Fontan candidate (with the caveat, of course, that this could change at any time - but, from what we know right now, he should be a good candidate). This is not true for all hypoplasts, and some do have to go to transplant at this stage in their journey, if not sooner. I am beyond grateful that Bodie is still with us and we're even having the luxury of worrying about a surgery a year or further away.

But it is major open heart surgery. I know families who have lost their heart warriors to this surgery, sweet children they have come to know and love, children who have been interwoven so deeply into the fabric of their families. Families with children who have walked into the hospital for this surgery with game faces on, said "I love you" and "goodbye" to their parents and that was it. I know kids who've had strokes, who've had horrendous recoveries and one child who had to have a "Fontan takedown." I know of 3 kids alone this last summer who had staph infections and ended up going home on IV antibiotics. Sigh. THESE are the thoughts that hit me in the shower, that literally take my breath away, make me nauseas and start shaking, make me cry out of the unfairness of it all.

And yet I know of kids who breezed through, were home in a week or two and had relatively minor complications. The tough reality is that we won't know which camp Bodie will fall into. I can only hope and pray that we fall into the latter category. Truly, I know far MORE kids who fall into that last category than any of the aforementioned ones. And even many of the kids who had rough complications ended up ok when all was said and done. So, for tonight and all of the nights I find myself fixated on thoughts of the "F" word, I focus on those success stories - the post-Fontan kids I know who, despite whatever complications they did or didn't have, are doing incredible today. The kids who are finite examples of all of the HOPE there is for HLHS kids these days. Kids who, unless you saw their chests, you would never know what they'd been through. Today, they are my hope.

And Jesus is my ultimate HOPE. HIS promises and HIS love for my family, and my son, holds us together more than anything we could ever find here on earth. I take incredible comfort in knowing that HE loves my son far more than even I can fathom (which is such a hard concept to even understand as a parent, since our own love for our children is so immense). And for that, we are incredibly grateful.

And I focus on the here and now. Because really, when it comes down to it, that's all we have with anyone, healthy or not, right? We have the opportunity, today, to love our children and to cherish them. Thankfully, tomorrow will come in its own time, which affords us the wonderful opportunity to cherish just today. And to love these two children as much as humanly possible. What an incredible gift.

So I think, for now, I'll tell the "F" word to take a hike. ;-)