Thursday, March 27, 2014


Wow. This whole moving process is totally beyond overwhelming. 

We got the keys yesterday and started moving things over today. We don't have much, but the salvage company showed up with most of what they were able to clean, which turned out to be a lot more than we expected. So we had lots to do. 
Anyone who knows me well knows that I have a touch of ADD (ok, maybe more than a touch), so going through something like this  is all kinds of tough. Every time I turn around, I'm overwhelmed by everything that has to be done, everything that has to be bought, etc. It's sort of like registering...while you're homeless. Not quite as exciting as you'd think. It's just a lot.

But we're muddling through this. I know each day will be one day closer to getting back into routines and settling into a new normal. 

In the middle of all of this, I am so grateful for God's touch in our lives - most especially for placing a few key people in it. I am BEYOND grateful for two amazing girlfriends who have been very effective at reining in my crazies. Faith (whose daughter Anna happens to be Sierra's bestie), has been organizing furniture donations and local support in a way I never could have at the moment. And Jennifer, who took time out of her busy schedule today to help me get our kitchen moved in and set up. I tell ya, if I didn't have these girls to help me, I'd probably be rocking in a corner somewhere, surrounded by unopened boxes. So THANK YOU, Jennifer and Faith!

And thank-you to all of you who have offered furniture, sent money or giftcards, or donated to our fundraiser. I wanted to send everyone individual thank-you notes, but, yeah, that just isn't happening right now. So, please, please accept my heartfelt thank you for your love and support during this transition time!

And, speaking of help, we still need lots of it! Our biggest need is regarding furniture and moving into our rental home. If you live locally and are available to help us move some furniture this weekend, please email Faith as soon as possible at - and, if you have any of the following furniture and are willing to donate it, please also email Faith: night stands, DVD player, sofa, bar stools (standard size), file cabinet, patio furniture, BBQ and 2 Twin air mattresses (until our new mattresses arrive next week). 

Also, if you live locally and can spare some time to help us unpack and move stuff in next week, please email me at and let me know!

Like I said, this part of the journey has been rough. And there is just SO.MUCH to do. But even in the darkness, the craziness, there have been sweet moments of light.

Moments like Bodie's beads. In the hubbub of the salvage crew combing through the bedrooms and the loss team taking what was left, I realized on Saturday that I hadn't seen Bodie's Beads of Courage. I was so afraid they had been in with the dress-up clothes, most of which had been thrown out (not worth the cost of cleaning - just cheaper and easier to replace them). I sent an email to the Contents Director, Jyl, to ask if she could find out whether they had salvaged them. She had her team pull all of the boxes from the kids' room yesterday to comb through them to see whether the beads were in them.

I was beside myself worrying that something so precious had been inadvertently thrown out. 

I got an email from Jyl this morning that the beads had been found! And, bless her heart, when the moving crew showed up today with all of our salvaged stuff, the very first thing the driver did was bring me the beads, telling me that he had been instructed to hand deliver them to me personally.  

Amazing. For those of you unfamilar with Beads of Courage, it is a nonprofit organization that helps you to tally the number of different procedures and surgeries your child has experienced, and sends you a corresponding bead for each individual procedure, along with a lanyard personalized with your child's name. 

Bodie's beads represent 2 cardiac catheterizations, 9 central line and PICC placement & removals, 6 clinic visits, 94 nights spent in the CardioThorasic ICU, 15 days spent on TPN, 25 dressing changes, 36 echocardiograms, 2 emergency/unusual occurences, 5 antibiotic infusions, 43 nights spent in the step-down unit, 75 days spent in isolation, 4 different instances of learning new medications, 135 IV Starts and blood draws, 150 CT scans, EKGs, MRIs & X-rays, 5 tranfusions, 22 NG, chest tube & foley catheter insertions and removals, 21 days spent on a ventilator, 50 visits from PT/OT/Nutrition, 3 extraordinary experiences, 3 cardiac surgeries and 5 hospital discharges. 

And that's before his Fontan and subsequent hospitalizations this past Summer and Fall.

I get choked up just thinking about it.

Now you see why I was beside myself thinking they were gone.

What an answer to prayer that they were found. 

Tuesday, March 25, 2014

The end of an era

3 1/2 years ago, this little 7-month old dude was evaluated by our local Regional center and determined to be really, really behind. We began twice a week Physical Therapy and once a week Occupational Therapy Sessions in our home. And so began Bodie's upward climb. Bodie was SO clingy that he would not even let me leave the room. It would be months before he would let me out of his sight while working with our amazing therapist, Tam.

At around 18 months, he transitioned out of OT and to center based PT, and started Two Steps, a special needs pre-preschool program 2 mornings a week. He did that for 3 months and then started TWISP, the development preschool he would stay at until he turned 3 and aged out of Regional Center services and moved to a traditional preschool.

Through it all, he continued weekly PT sessions with Tam. 

Until now.

Today, he officially graduated from Physical Therapy. The last special service he was getting due to his rough start. Because he doesn't need therapy anymore. Because he's doing awesome. You know, no big whoop. Ok, maybe it's kind of a big whoop. This kid was SO far behind when he started therapy. SO FAR BEHIND. Months behind. 

So, to be caught up, yep, that's a pretty big deal.

I am so stinking proud of how far this kid has come.

So is Tam, who has seen this kid through so.dang.much.

And, I think, maybe, just maybe, this little guy is a little bit excited, too.

Thank you to Tam, and the entire crew at TherapyWest, who have grown our boy into more than we ever imagined or dreamed. Thanks for loving him as much as we do. We've been so blessed by you.

Monday, March 24, 2014

The Tee-Ball Chronicles

We started Bodie in Tee-Ball this year. We wouldn't have put him in so young, but one of his HLHS buddies' dad was coaching his team and asked if Bodie wanted to be on the team, so it was sort of a no-brainer. We thought " How fun! Bodie will LOVE it!"


One would think.
 Bodie, oh Bodie.

His first game, he got up to bat, hit the ball and then meandered over to 2nd base, and, after, being tagged out by 3 other players, meandered slowly over to 1st base. The 2nd time he was up to bat, he hit the ball, ran over and picked it up, then walked 1/2 way to first and then was like "screw this. I don't want to do it." and walked back to the dugout, where he sat for the rest of the game, spraying himself with the team water bottle and refusing to go back out on the field. 

His second game, he laid on the ground and flat out refused to play for most of the game, claiming he was "too tired." He was forced up to bat the first time.
Why yes, that would be OUR kid everyone is laughing at. Hahahaha!

He finally got up to bat out of his volition, only because I told him he couldn't swim later at the hotel unless he actually played in the game. So he hit the ball, and then ran the bases over the next 3 plays. He touched every base, only because he had a personal escort (one of the coaches) directing him each step of the way. Upon hitting home base, he said "So, can I swim now?" 

When I said yes, he promptly ran over to where Sierra was playing and proceeded to chase the other kids around like crazy.

Tired, my ass.

Sorry for the crassness, but seriously, THIS KID. I'm pretty sure he has learned that, if he says he's tired, everyone will back off and not make him do whatever it is he's supposed to be doing. I have NEVER heard him say he was tired when he was doing something that was his idea. 

It's honestly a tough line for us to walk - we want him to learn limits, and that it's ok to say he's tired when he legitimately is. He's ultimately going to be the one calling the shots with his health, and with subpar oxygen levels, he needs to learn what his body and cannot handle - and respect that. There will legitimately be times where he WILL be tired, where he really WON'T be able to do what the other kids are doing. BUT, we also don't want him using it as an excuse to get out of doing stuff that he actually can do. We didn't fight so hard to get his heart mended for him to use it an excuse.  

A life lesson for us, I suppose - and for Bodie.

In the meantime, we don't regret putting him in tee-ball and are grateful for the opportunity to try a sport out (and tee-ball is the CUTEST sport to watch!), but sure would love it if the kid would get into it and realize how fun organized sports can be! 
We're hopeful as the season progresses, he'll really start to enjoy it! And, if not, that's cool with us. He so does not have to be an athlete. But he does need to try. And we're not quitters, and we won't raise our kids to be, so we'll finish out the season...but I suspect tee-ball may be a one and done sport for us. :-)


Friday, March 21, 2014

How can I help?

I've been asked this a lot and up until now, I haven't really had an answer other than to pray for us.

There are a lot of things about this whole fire that are hard. Most of them, actually. Moments like today, when they came to haul away all of our belongings that have been declared a loss. I honestly lasted about 10 minutes of seeing our beloved belongings in the dumpster before leaving and sobbing in my car. SO many memories wrapped up in the rocking chair where I nursed Sierra and fed and rocked Bodie. And in Sierra's dresser - I remember buying it right before she was born, so abuzz with excitement that we were about to be parents. And our bedroom set. And their toys. 

I think letting go of things like this would be emotional even if we let go of them one at a time. But to let them go all at once, and so suddenly, is overwhelming. Letting go of some of the things, things we needed to let go of, was cathartic. But letting go of things we had no intention of getting rid of, has been much harder. 

It's just stuff, I keep reminding myself. 
Even so, it was our stuff and that makes this hard.
Please continue praying for the emotional side of this journey for us. 

And, in addition to prayer, we have tangible ways you can help us now! 

SO exciting!
Yes, that's right - we won't have to live in this hotel forever! Praise God!!!

If you live locally,

We need furniture. 
We have lost just about everything furniture wise. They're attempting to salvage 5 pieces of furniture, and that's it. Everything else has to be replaced. :-( This is going to take time and we don't want to be pressured to repurchase everything in 2 days. So, we're looking for furniture we can borrow to furnish our house with in the meantime. As we replace things, we'll swap furniture out and return it. But at least we won't have to sleep on the floor while we're finding new furniture! Specifically, we need:
1. A California king bed frame (set?).
2. 3 dressers.
3. 2 Bedside tables.
4. A couch.
5. A dining room table and chairs. There's a chance they'll be able to salvage our dining room table, but we don't know yet - nor do we know how long it will take to get it if they are able to salvage it.
6. Office furniture (2 desks (mine and Sierra's), 2 chairs (again, mine and Sierra's), a filing cabinet, bookshelf, etc. - our entire office was a loss).
7. Lamps (both desktop and floor halogen style)
If you have any of this furniture lying around, you don't mind letting us borrow it, and you can drop it off at our new place (we're planning on moving this coming Thursday/Friday), please contact Faith Spelbring at - she's handling all local donations).

P.S. A note on what we do NOT need? Clothes and toys. Almost all of the kids' clothes and most of ours were salvaged. And we pulled the kids' favorite and most special toys out before totaling everything else. Just as Dusk and I are learning this lesson, we're looking at this as an opportunity for our kids to live with a few less toys - in reality, they had way too many to begin with. 

We need meals. 
We are waiting until we are in the house to have a meal rotation set up - but trust me, we'll have one. If you're interested in having the rotation sent to you once it's up and running, please email Julia Ehlers at - she'll be handling the dinner rotation. 

If you don't live locally (or don't have furniture you feel like throwing our way):
My amazing Sisters by Heart Board members created a fundraiser for us. It's super easy to donate and we can use the funds for anything we need, thankfully! You can access it here

Gift Cards.
If you're into buying giftcards, we'd love giftcards to places we can buy everything we'll need to replace (Crate + Barrel and COSTCO for furniture, Office Depot and Ikea for office items, Home Depot and Target for, well, house stuff, restaurant gift cards - or just Amex cards we can use anywhere). If you would like to send giftcards, please mail them to our attention c/o Faith Spelbring, 7517 Naylor Avenue, LA, CA 90045.

No matter where you live, please PRAY! This whole process is emotional and unexpected. Pray for the 4 of us to cling to one another, and to God - and to roll with the punches (anyone who knows me knows rolling with the punches isn't exactly my strong suit - so extra prayers for patience for Amy would be great).  

And please pray our babies keep on keeping on together, leaning on one another. 


Monday, March 17, 2014

On being displaced...

To displace
to force (someone) to leave their home, typically because of war, persecution, or natural disaster. 

We're officially displaced. 

Of course, we're not displaced in the way most of us think of it, in a war-torn country in a camp somewhere, with no belongings of our own. 

And yet, displaced we are. Ah, such a 1st world problem. To be "displaced" in the comforts of a suite in a beautiful hotel that provides breakfast and cocktail hour every day. We are so very blessed to be taken care of, to have a temporary place to stay.

But, even so, being displaced is hard. So, so hard. On so many levels.

We have lost so much. We have some of our clothes (almost all were salvageable, but most are with the drycleaning company at the moment, so we have only a portion actually with us), but the vast majority of our belongings have been declared a total loss. What they are going to attempt to salvage has been removed to the salvage company's warehouse. The only furniture they're going to attempt to salvage are the kids' bunk beds, our dining room table, our grandfather clock, the piano and the kids' desk. All of our other furniture will have to be replaced. 

So will our mattresses. Dusk and I just purchased our mattress in December. We briefly considered taking it back to COSTCO and saying "It just has this weird smoke smell. We just can't figure out where it's coming from." COSTCO will let you return anything, right?!? Obviously kidding, but if you've read our blog for any length of time, you know humor is how we get through.

So, right now, we're sleeping in beds that aren't ours, with linens that aren't ours, listening to sounds that aren't familiar to us. We're waking up earlier to eat breakfast in a hotel dining room and drive new routes to the kids' schools. We don't have a kitchenette, so the kids' are getting Luncheables in their lunches every day and dinner is drive-throughs or take-out.  For the mom who meticulously planned out all of our healthy, home cooked meals for an entire month at a time, and for a family who is used to living on fresh produce, this is hard. Every new sound, new smell, unfamiliar meal, and different driving route is a subtle reminder that this isn't our home.

The kids are faring well, considering. We're trying to keep their routines...

...including working on AWANA verses 
...and making it to our softball and t-ball games
But it's so hard when every fiber of their little beings is crying out "I'm in a hotel! With a pool! We're on vacation!!!" 

Emotionally, they seem to be handling things really well. But then, Bodie woke up almost every hour last night, screaming and crying, clearly having nightmares. When we asked him this morning, he couldn't remember what his bad dreams were about, but did remember good dreams about fire trucks. I can only imagine he was reliving the night of the fire. It made my mama's heart so sad.

The uncertainty of the future compounds everything. We're working very hard to find a place to live (we have 2 realtors who've been so kindly helping us), but as of yet, are still empty handed. We've played this real estate shuffle before, the dance where you feel like you will never find anything, and then, suddenly, a new listing pops up, it's perfect for you, you grab it and end up in the best possible home for you. But we're not to that point where the listing has popped up yet. We're currently in the utter depressing and demoralizing phase where we feel like we will be living in this hotel and eating take out forever.

This, all of this, is just poignant reminders that we are indeed displaced. The discomfort, the utter starkness of the reality that this is NOT our home hits us every moment of waking hour. The longing for the comforts of our own home and belongings runs so deep. 

It is such an enormous reminder to me that this is how we should feel every day, as Christians. This is NOT our home. We should feel uncomfortable. We should feel a longing toward our true home, in Heaven, at the right hand of God. And, if we don't, perhaps we're not displaced enough. Perhaps we've grown too complacent in our Western world. I love when God whispers these lessons to me amidst the storms of life. A gentle reminder that he is molding me, and our family, and drawing us closer to Him. Forcing us to rely on His promises.

And so, in all of this, this displacement and uncertainty, we wait upon the Lord and His next steps. 

And we hope, I mean really really really hope, His plans include a rental home soon. 

In the meantime, you can support us by praying for us. Pray that we find a home, pray for peace for us in this process, pray for peace for the kids, pray for sanity for Amy (as our friend Karin so brilliantly pointed out when she came to visit us yesterday -
Since we went basically from Bodie's hospitalization straight into the fire, Bodie and I have really been displaced for 2 weeks already. I'm kinda going stir crazy. Pray for patience for me during this time.)

I'll sign off with this thought.

6 years ago, I prayed that God would use our family in the sanctity of life movement. 
2 months later, we became pregnant with a baby who had down syndrome and would pass away in utero.
2 months after that, we became pregnant with Bodie.
Both times, we were unequivocally advised, multiple times, to terminate the pregnancy.

This past January, I prayed that God would help me learn to simplify and reprioritize our lives and declutter.
2 months later, our house burned down.

Next time, I'm praying to win the lottery.

Tuesday, March 11, 2014

Surely the presence of the Lord is in this place...

The last couple of days have been rough. Excruciating, actually. It is impossible to accurately describe in words the extent of the damage to our home. I would say we were naive initially, in assuming that most of our belongings would be salvageable. As we begin the process of inventorying everything, we are hearing the words "total loss" again and again. 

Most of our furniture will have to be replaced, as well as mattresses, everything in the bathrooms, most of our kitchen items and lots of toys and other odds and ends.  That's to say nothing of the attic items, which we inventoried ourselves this morning. That was hard. So little, so very, very little was salveagable. 
This was the contents of our attic - in the middle are the items that we can definitely tell are destroyed and which will need to be formally inventoried. To the left are debris, roof parts, and items we couldn't determine what they were since they were burned so badly. Beyond this (and not in the picture) were the 3 or so boxes of things we're asking them to attempt to salvage if possible, which include my wedding dress, completely melted into the garmet bag. 

The loss is staggering. We won't know the extent of the loss until the final inventory is done, but it's significant. 

And the house. Oh, our house. The sweet little house that has taught our babies to walk, and rung with the echoes of their laughter and screams. The house where Sierra learned to read and Bodie learned to crawl. Their bathroom with monkeys and sweet, happy scents and memories of their splashing and laughing. The walls where Dusk has painstakingly painted every square inch. The kitchen where I have spent hours baking birthday cakes and classroom treats. The living room where Bodie and his friends ripped open his birthday presents just 2 weeks ago. All a total loss. Maybe not today, but in the coming weeks. 

We have been told the entire house will have to be gutted. It looks like a war zone. Ceilings are ripped open throughout the house, walls are punched through, both bedrooms and the office are covered with ash and chunks of ceiling. The office isn't even safe to go into at this point. 
(this is the office; you can see the ceiling is completely gone.)

The kitchen cabinets may be salvageable, but the countertops will be lost and the walls will have to come down. How far we don't know - it depends on the extent of the fire. 

The floors throughout the house are covered in a mixture of mud and ash and will all have to be replaced. The living room, which initially looked ok, was covered in huge sheets of ceiling by late Monday night. It is impossible to explain what it's like to stand in the home you have loved and built your family within, and watch it literally coming down around you. 
What's left of the kids' bathroom.

We haven't let the kids into the house. We don't want them to remember their house this way. Heck, Dusk and I don't want to remember our house this way. It's awful. 

Like I said, this week has been tough. We have cried many tears over our losses.

And yet, even so, in the midst of such sadness, we have felt such grace, such miracles that can only be the hand of God.

Many have asked how the fire started. 

It started at 9:30pm or so on Saturday night. Dusk was working in the back and I was working in the kitchen. We had put the kids to bed, and Sierra had gone right to sleep, but Bodie was refusing to. He was feeling squirrely and had been in and out of bed every 10 minutes for over an hour. He was insisting on keeping their bedroom door open, which we don't usually do. I finally gave up and told him he could sleep in our bed.

As I was lying him down, I smelled something burning. I didn't think much of it, since it honestly smelled like our dishwasher smells when plastic utensils get caught where they shouldn't be. But I walked into the kids' room and realized it was coming from their bathroom, which is fully enclosed in their bedroom. I saw sparks coming out of their fan in their bathroom (it was a light/fan vent/heater combo, but only the fan was on).

I turned it off and realized the sparks were still coming and ran outside to get Dusk. By the time we got back in (10 seconds?), flames were coming out of the fan. He yelled for me to grab the garden hose and by the time I got it to him, he realized it wasn't putting it out and we were in trouble. He told me to call 911. By that time, the kids' bedroom was filled with smoke. I did, and then grabbed the kids, my purse, my laptop and Bodie's meds (I didn't know what was about to go down and didn't want to scramble to get Bodie's meds in the morning) and got out of the house. I told the kids to grab their favorite stuffed animals on the way out and come. I didn't realize until we got out of the house that they hadn't grabbed them. 

We got out of the house as the fire trucks were arriving. Thank God for the kindness of our neighbors and friends who took the kids, and helped Dusk and I as we helplessly stood by and watched our house engulfed in flames. The whole experience was surreal, to put it mildly. 

But even so, so many blessings.

Thank God the fire happened on Saturday night, when I was home, and not 2 nights later, when I was supposed to be at a friend's and Dusk may have been out in the back working as the kids' slept, and they may have slept through the fire before Dusk knew what was going on. Dusk and I cannot even allow ourselves to think of how much worse this could have been, how the unthinkable could have happened. How close we came.

Thank God Bodie was refusing to go to bed and insisting on leaving their bedroom door open. Otherwise, who knows how long it would have been before I would have smelled the burning. But because he was up and insisting on his door being open, I smelled it right when the fire started. That fire spread so fast that truly, every second counted. We're so grateful Bodie insisted on having that door open.

Thank God we were not hurt. Not even a little bit.

Thank God Dusk was able to grab  expensive equipment he had in the attic on his way out of the house. Thank God he had the wherewithal to grab equipment he was holding for clients.

Thank God for the kindness of the incredible LAFD firefighters, who, once they had the fire under control, asked me what specifically we needed out of the house. And who went into the kids room, and came back with exactly what I had asked for - Sierra's tigger and her American Girl doll, and Bodie's Momo monkey and Joshie Doll. And clothes for the kids, and jackets and shoes for Dusk and I, who were literally wandering the streets in our wet socks.

Thank God the kids' most prized possessions, and all of their clothes, survived the fire completely unscathed. There's no explanation for it, to be honest. Tigger and Sierra's doll were sitting on her bed, in a bedroom filled with smoke. And yet, not even a hint of smoke on them. Same with Bodie's special possessions. I know they're just toys, but even so, they're their special things, their comfort items. This is so hard for the kids. Heck, it's hard on Dusk and I, but we have a lifetime of experiences to deal with this - we know what box to put it in. Our kids have 4 and almost 7 years of lifetime experiences. They don't know what to do with this. So we are so grateful that they have their comfort items to help them through.

Thank God for amazing friends, like Bill, who was by Dusk's side the night of the fire, and at our house early the morning after the fire, helping Dusk move our refrigerators to avoid defrosting, bring coffee and breakfast, and just plain being there for Dusk. And the Risso's, who took our kids in and loved on them the night of the fire, opened their doors to us, and took Bodie again Monday so that I could be at the property with Dusk. And Denise, our sweet neighbor who took load after load of laundry from us and has been endlessly washing for us to get smoke out of everything she can. And Faith, who took both kids all day Sunday - and spent all day with me today, helping inventory our entire attic (no easy task), and sort through clothes, and bring us all kinds of food - and just love on me.

Thank God for schedules aligning just perfectly so that Johnny was in town, Jeff hadn't left town yet and John was available, because these 3 guys saved us in a million different ways the past few days. I can never thank them enough for what they did for us. Between Johnny sleeping overnight on the property to keep his eye on the property, to Jeff helping me search around the debris and ash in the kids' bedroom to find Bodie's missing cleat, to all three of them helping Dusk in the wee hours of the morning finish a client's mix, these guys are beyond amazing. 

Dusk and Jeff finishing a mix together, 2 days after the house burned down. 

Thank God our attic burned and not our whole house. We could SO easily have lost EVERYTHING. And we did lose a lot. But yet, so so so much was salvaged. Truthfully, most of what we lost in the attic was stored stuff we should have pared down long ago. Stuff we thought we needed, but not really. 

Thank God we have amazing insurance, who are already on the ball, encouraging us to find short-term housing and a home rental for the longer term. An insurance company who has already gotten the ball rolling on restoration and is working so compassionately with us to help us navigate this incredibly difficult path. 

So, this journey is tough. It's awful actually. And it's been filled with lots of tough moments. Lots of tears. But even so, we are beyond grateful for God's hand on our family. We have been spared so, so much.

So, at the end of the day, our hearts are full and so very grateful.

Even in the darkness, we feel his light.

So completely. 

Sunday, March 9, 2014

It's just stuff

So...we thought we learned our lesson last year about stuff just being "stuff." But apparently, we still had more to learn.

I had a long blogpost written out, but my phone ate it. The short story is that our attic caught fire last night due to something shorting with the vent fan in the kids' bathroom. It was confined to the attic, but we lost most of what was stored in the attic and they tore out the ceiling in most of the house to get to the fire. Structurally, there is significant damage to the house and we will looking for temporary housing for months. Our important belongings are safe, as are we. The rest is just stuff.

We appreciate prayers as we navigate this very scary journey, particularly peace for the kids as they saw the house burning and are obviously Affected.

Saturday, March 8, 2014

Bodie: 1. EAT: 0.

I realized I typed yesterday's post so quickly I may given the wrong impression! Bodie's team didn't discharge him solely because we had a softball game to get to - but, they did know we really wanted to try to be discharged in time for our weekend events. Once they realized he was safe to be discharged, they worked really hard to monitor him as long as possible but still allow us to be discharged in time for Sierra's softball game - and Bodie's t-ball Opening Ceremonies this morning. We are enormously grateful for that. 

After Thursday's up and down day of being in and out of EAT, it felt like home was still pretty far off. But then, something about the Flecanaide and Atenelol finally worked its magic and he was out of EAT from Thursday night through Friday morning. He went back into it as he was due for his meds. At that time, Bodie's EP decided it was safest to increase his beta blocker, give him his morning meds, watch him for the day and send him home late afternoon and manage any remaining med titration outpatient. 

An hour later, Bodie popped out of EAT - and has remained out since!!! It 100% confirmed the decision to discharge us yesterday. What an enormous blessing for us!

We don't know how long he'll stay out of EAT. We're hesitant to be too optimistic, considering we have thought twice now that we conquered his EAT, only to have it return within a week or 2. But both of those were ablations, where they find the one "focus" of his heart that is causing the arrhythmia and cauterize it, stopping the arrhythmia. But, sometimes (and definitely in Bodie's case), if you stop one focus, another one will just pop up. That's what happened both times to Bodie. 

Medication works a little differently, because it changes how the heart responds in total, rather than ust one spot. So, yes, the EAT may come back (and likely will as he grows), but will generally mean we need to titrate up his meds to bring it back under control, as opposed to any surgical intervention. The fact that Bodie's body was so responsive to this new medication is a fantastic sign. It means that we may have just found the perfect cocktail for our little man.

So, I would say, for the first time in several years, we feel hopeful that we have a handle on his EAT. For today, Bodie has definitely one-upped the EAT. We'll take that.
 Please pray that his EAT remains under control

We continue to give thanks for a medical team that can manage Bodie's incredibly complex cardiac needs, and equally important social needs - like sister's first softball game last night...and his own T-Ball opening ceremonies this morning.

This last pic is of Bodie and his buddy, Tyler. Tyler is also 4 and also has HLHS and had his Fontan a couple of weeks before Bodie this past summer, also at CHLA! 

If you had told me when Bodie was diagnosed that he'd someday play t-ball, at all, let alone with another kiddo with the same heart condition, I'd never have believed you! This whole CHD journey is just amazing. I love these boys! They're such fighters!


Friday, March 7, 2014

Just in time

Oh how I love a medical team who understands that it's not just about my son's heart, but about his whole life.

Which today, includes being discharged in time to make big sister's first softball game.

Praise God for a medical team who understood that...and Bodie's body who cooperated fully with that plan.

Sent from my iPhone

Thursday, March 6, 2014

...And we're circling...

Still in a holding pattern over here, circling over that perfect spot where Bodie's EAT goes away and we get discharged. I have no idea when we'll land.

Today was a better day than yesterday. Better in that we had 2 longish stretches without EAT. After being paced out of EAT this morning, he made it 2 1/2 hours before he went back in. We re-started Atenelol (a beta blocker designed to keep his heartrate down) and then paced him out of the EAT again. That time, he made it almost 5 hours. So, I guess on the whole we're seeing progress. Bodie's EP tells me not to be discouraged, that we made a lot of progress today, and that everything he's seen yesterday and today has helped him to understand a little bit more of what Bodie's heart is doing and why - and helped him to plan his next steps.

But I'm not that patient. I want it resolved yesterday. So, I am discouraged. Trying to remain positive - I know things could be oh, so much worse. We're so lucky that Bodie is doing as well as he is, that this isn't a surgical admission, that we're at a center with such a phenomenal EP team. But I'm tired. Bodie's bored. 

Bodie's skin is SO over this.

We're SO.READY to get back to our lives.

Please pray that happens soon.

And please pray for continued bright spots in our somewhat mundane days.

Amazing nurses like Yvette, who has been with us for a long time. Bodie was pretty well convinced Yvette was his personal babysitter today, playing hide and seek with her and bringing her all sorts of presents all day.
Friends who drive up in the middle of the day to play in the play room with us, like Sarah and Randy, from our home group at church.

And beloved teachers like Miss Chelsea, who come all the way up here after a hard day of work to play with Bodie.

Please pray for continued forward improvement tomorrow, and for Bodie's body to do what we need it to.

Our new guardian angel

In the midst of everything going on with Bodie this week, I haven't mentioned that we lost someone very close to us.
Dusk's grandma passed away on Monday. Although she lived in Oklahoma at her passing, she had lived in California for years before that. Dusk lived with her during his college years, and we had visited her with the kids several times before she moved.
We're so grateful our children had the opportunity to get to know and spend time with Grandma Vickery. She was a wonderful woman and very, very loved.

We love you, Grandma Vickery. We know you're holding Grandpa's hand and celebrating with Jesus now. Thank you for  watching over our sweet Bodie.


Wednesday, March 5, 2014

Holding patterns.

I detest holding patterns. I just don't got time for that. In the air or on the ground, they just And I can't stand them. 

I especially don't like them when they're referring to my spunky 4-year old boy.
But, that's where we find ourselves.

Last night and today didn't go exactly as hoped for. Bodie's Electrophysiologist was in our room 3 different times today, interrogating his pacemaker, reviewing the ekg print-outs and checking his rhythm. All told, his pacemaker was interrogated fully twice, and partially interrogated (to confirm rhythm) multiple other times, and he had 2 ekgs. It's all very very complicated (his EP said it's "EP 404" - you know, 4 levels above "EP 101"?), even for the gurus in this field. Bodie is just interesting (his EP's word - probably only because it's rude to call someone else's kid weird). But he definitely kept us on our toes today. In the picture above, he had a total of 19 stickers on (5 for his regular monitoring, 12 for the ekg and 2 for the pacemaker interrogation). We didn't want to take any off, since we knew they'd be continuing the monitoring throughout the day. 

Anyway, the long and short of it is that he's in EAT all the time. It's likely a different focus than before, but it's there and the Flecanaide isn't making it go away. Yet. But the Flecanaide is definitely having an effect. Unlike his previous EAT, he can be (and successfully was, twice today) paced out of this EAT. But, unfortunately, once he's out, he's bouncing right back into it within about 10 minutes or so. Talk about discouraging. I may have actually uttered the words "Rhythm issues suck monkey balls." Sorry folks, but they do. For reals.

The question is whether (1) the Flecanaide just isn't enough into his system yet to keep him out of the EAT, (2) the Flecanaide dose isn't high enough for him, or (3) the Flecanaide isn't the right drug for him.  We just aren't far enough into the Flecanaide to know the answer to any of those questions. So, we find ourselves in a holding pattern. My favorite place, right? 

Sigh. God is clearly teaching me patience again

So we wait. And we try to pace him out of the EAT again tomorrow morning (2 more Flecanaide doses in from this morning when we tried) and we see whether he can stay out of it. And we go from there. 

I hate waiting. Have I mentioned that?

But that's where we're at.

So, keep the prayers coming.

In the meantime, we'll keep hanging with our favorite peeps.

Nutritionist Emily 
Emily has been with us since birth and is pretty much the only reason the kid gained enough weight to avoid a g-tube. We so heart Emily!

and Nurse Michelle 
Today was Michelle's last day on CVAcute - she transitions tomorrow to the Emergency Department. We're SO sad. We have a long history with Michelle and absolutely adore her. She is always such a radiant happy face to greet us in CV Acute. What a tremendous loss to cardiology - but how lucky the ED is to get her! We're secretly (or maybe not so secretly?) hoping we don't see her again (in the hospital at least!)

and doing lots of games and crafting

(yeah, we might be getting a little stir crazy in these parts.)

Bodie has been charming the pants off of everyone in the unit. He has literally been sprinting down the halls - to get to the play room, the nurse's station (where he's probably stolen at least 50 stickers by now), etc. I have to say, his spunk is pretty awesome, especially for a cardiac kid.

Keep the prayers coming, for our rare little man - pray for clarity, answers and a solution!

Tuesday, March 4, 2014

Watching and waiting...

So, we're here in the hospital, 36 hours and 3 doses of Flecanaide in. The good news is that he has had no negative reaction to speak of, thankfully! The neither-good-nor-bad-but-just-is news is that he also hasn't had a positive reaction. His Electrophysiologist tells us patients never react to the first or second dose. They "should" react to the 4th dose, but in his experience, most patients who are going to have a positive reaction to the Flecanaide, do so about an hour after the 3rd dose. So our money - and your prayers - need to be on tonight (he just had his 3rd dose) and tomorrow morning, when we get our 4th dose.

Please keep the prayers coming that this drug works for Bodie!

Besides that, we're hanging in there, staying VERY busy.

Minutes after getting to the floor. Just chillaxing, watching a movie, eating chicken nuggets.
He walked into the Acute Care Unit laughing and playing and has been pretty happy ever since. He is entertaining the nurses nonstop. ;-) 

We've been working on our letters
(Schoolwork doesn't stop just because we're in the hospital!)
and making "telescopes"... 
We've been "hiding" from the nurses
We've continued to feed our obsession with the vacuum tube system here, by playing on the kindness of nurses and sending things from one nurses' station to another.
And having some special time with some VERY special friends.

My fellow heart mommy, Dana, stopped by today and brought us lunch. Dana's sweet daughter Addie has ALCAPA (another CHD) and was in the CTICU for a long time with Bodie when he was a baby. Dana and I grew very close. Addie is doing incredibly well now, thankfully! Dana and I correspond on email often, but I think it's been a couple of years since I have seen her in person. Today was AMAZING - so much fun to sit with her!

We snapped a picture of the 3 of us before she headed into the CTICU to see favorite nurses and doctors. I LOVE this picture, especially since I'm fairly positive I have a picture somewhere of Dana with Addie and me with Bodie right before we were discharged when he was 5 months old. We've come so far.

While having a close friend of mine visit was a huge treat for me, Bodie got his own special treat - in the form of his BFF Ella, who was here for her pre-Fontan cath (which went great, by the way!). And, luckily for me, Ella's parents, Melissa & Brady, happen to be two of my favorite people on the planet - so, it was sort of a party, even in the hospital! We're so blessed to have been here the same time as them!

We got settled into our room while they were still in recovery. But Bodie was chomping at the bit to see Ella, so as soon as we got word that they were settled in, Bodie practically sprinted down the hallway to see her. This is what transpired when they saw each other.

Ella's expression just gets me. You can totally sense the love between these two. 
 And, once Ella was feeling better, we did a few trips back and forth between their rooms for the kiddos to play. They are SO.STINKING.CUTE together!
Ella went home today, and Bodie just ran to her room tonight, just to make sure she wasn't still there. Poor little dude. We'll definitely have to plan an out-of-the-hospital date for them in the near future!

I'd also like to send a shout-out to Dusk's amazing Aunt Karen, who came to town to help out with Sierra this week (and, from what I hear from Dusk, to help with a whole bunch of other stuff as well). Thank you SO MUCH Aunt Karen - what a blessing to know our sweet girl is taken care of! 

 That's it for now. Please keep those prayers coming for our sweet boy!