Friday, September 2, 2016

Recovery: The good, the bad, the unexpected

Bodie is now 2 weeks post-op, and, by most measures of success, doing pretty well. 

This recovery has been much harder than previous surgeries, and we're not sure why - perhaps it's his age (being older now) or the fact that this was a more painful surgery, or some combination of the two. But by Monday, Dusk and I had reached the conclusion that something was different about this recovery. We knew Bodie was holding onto fluid (we could see it in his poor puffy eyes) and he was spending a lot of time lying around and saying he didn't feel well.

We had a follow up appointment with cardiology on Monday and found our answer. His heart function is pretty sluggish, compared with his baseline function. It's a bit of a chicken and the egg scenario - "Is his heart function sluggish because they pushed so many fluids after the seizure and it's just hard for his heart to get through that extra fluid? Or is there so much fluid onboard because his heart is so sluggish from the after effects of the anesthesia that it can't get the fluid off like it normally could?" Either way, the end result is the same - a kid feeling crummy and like a balloon about to pop. So we doubled his diuretics - and, 4 days later, he has peed off 4 pounds of fluid (seriously, almost 10% of his body weight? I'd be feeling pretty cruddy, too if I was carrying an extra 10% of water weight!!!) - and is like a new kid.

He even went to karate on Wednesday and earned his next belt stripe! 
(I know, 12 days post op is a little soon to return to karate, but in my defense, the CT surgery team had said he could return to karate "when he feels ready" and, well, he felt ready!!!). 

The plan now is to slowly wean the diuretics and make sure his body can handle it. His heart function took a similar hit following his Glenn surgery at 7 months old, so this is not our first time at this particular rodeo. It recovered then fairly quickly, and there is no reason to think it will not recover again this time. All the same, we really appreciate prayers specifically for his heart function to bounce back. In the meantime, he'll be monitored closely by cardiology to make sure we see that function come back to his baseline.

He had his CT surgery post op appointment today and that went well.  Unfortunately, during his appointment, he was in EAT (Ectopic Atrial Tachycardia, the fast heartrate - i.e. the whole reason we did this surgery). We knew going into this surgery that there was NO guarantee it would work, but that the odds were very good that it would help him by reducing the amount of EAT he's in, and the odds were pretty good that it would stop it entirely. Unfortunately, surgery has not stopped the EAT entirely. And, from my vantage point, it looks like we're actually seeing a lot of it. 

We're trying not to jump to conclusions ("surgery failed! We never should have done this!") - clearly, I'm VERY good at doing just that. His electrophysiologist wants us to get him fully recovered (approximately 30 days post op) to do a holter monitor and see where we're at. We'd REALLY appreciate prayer that the EAT we're currently seeing is just post-op nerve twitchiness and that, as he fully recovers, it will go away. 

Finally (if you've made it this far!), Bodie had one unexpected complication from surgery that he wants to share with you all. If you can believe it, he is SUPER excited about this. The nerve to his left eye was affected by the surgery and his left eyelid droops a bit now and his pupils are different sizes (the right is bigger than the left). 
So, basically, my previously big blue eyed baby now has the trademark "Gerrish squint." 
Sorry, dude. 
At least you look more like me now?

(The technical term for this rare (so of course Bodie got it) complication from a sympathectomy is "Horner's Syndrome."). It does NOT affect him in any way other than cosmetically. It was long thought to be completely irreversible, but a recent study showed an almost 50% chance of it spontaneously going away within 6 months post-op. 

Bodie's is very mild. Sometimes, you can hardly tell. When he is tired, or fluid overloaded (like the last 2 weeks), it is more obvious. (So if you thought there was something "off" about his left eye in pictures since his surgery, you were right - and very observant!)) And when he goes out in the sunlight, the right pupil constricts almost down to the size of the left, so you can't tell at all. We had held off saying anything since, well, does this poor kid really need us pointing out anything else to make him different? 

Dusk and I were pretty crushed initially. But we told Bodie this morning and he was SO excited. He says it makes him like a Superhero now. He is so proud of his special eyes! So we're running with that. I think we could ALL use a little of that resilience in our lives! 

So I'll leave it up to you whether to pray for it to spontaneously resolve. If you do, just don't tell Bodie - he really wants it to stay that way!
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Wednesday, August 31, 2016

Thirteen.

A few weeks ago at dinner, I mentioned to the kids that "mommy and daddy never should have gotten married." 

When I saw the looks on their faces, I had to immediately backtrack and explain what I meant.

We are SO happy we got married!

But...
We are so different.
So, so, SO different.
I am the optimist to his pessimist.

My glass is always always ALWAYS half full, even if there's only a drop of water in it. He is so busy pointing out the flaws in the workmanship of the glass that he never gets to the question of whether it is half empty or half full.

His feet are planted firmly on the ground (ok, maybe even a few inches under the ground), while my head is in the air.

He moves slowly and deliberately. I have permanent bruises on my shoulders from walking too fast and cutting corners too close, hitting my shoulders on the wall. For the first few years of our marriage, he would repeat the mantra to me "Slower, more calculated movements." To which, I would replay "I DON'T HAVE TIME FOR SLOWER, MORE CALCULATED MOVEMENTS!!!" He finally gave up.  True story.

I sometimes think God put us together just so I would have someone to fix all the stuff I break.

When we went to premarital counseling, after our personality tests, the pastor said "Well, the bad news is, you two are different. VERY VERY different. The good news is, you two are very VERY aware of how different you are."

Yeah, on paper, the two of us never should have gotten married. A lot of people never thought we'd work. Just too different, I guess.
But we were crazy in love - and we were sure it was a God ordained thing.


And you know what's cool? We make a pretty good team. 
If we were both like me, we'd be so busy focused on how great everything was, we'd never bother to change anything to make it any better. And if we were both like Dusk, we'd be so focused on how everything needed to be fixed, we'd be so miserable no one would want to hang out with us. I think God knew we needed each other.

13 years later, looks like He was right. 
It hasn't been easy, and has required lot of work on our part, and lots of help from pastors and therapists along the way.

But who would have thought? 
Who would have thought such total opposites would make it through the "good" parts of marriage, let alone the excessive amounts of bad we've been hit with? 7 miscarriages, 8 heart surgeries, 2 hip replacements, a burglary, a house fire, and lots of other "fun" stuff along the way? 
Probably not a lot of people.

And they'd have been right.
Except that, at the center of all of our differences is the most important similarity.
God.
The one thing that holds it all together is our shared faith in His truths and His love. And our unwavering joint commitment to trusting Him and following Him.

Thank God, 13 years ago, we decided to prove some people wrong. 
Because if we hadn't, we wouldn't have this amazing little tightknit family. 
And we wouldn't have it any other way.

I know 13 years doesn't seem like much. I mean, my parents have been married almost 50 years, which, I think we can all agree, is a LONG time to be married to the same person! But, the way I look at it, we get credit for time served in the bad parts, so it's really more than 13 years! Am I right???
Here's to 13 years. Celebrating the right way. With dinner at Shakey's. 
In our defense (yeah, I know, there's really no defense for it, but i have to try), the kids have gift certificates for Shakey's that expire today, so we have to use them!. And, at this point, we're celebrating by not being in the hospital!  

Here's to 13 years of us getting better and stronger together. Either that, or now being a bratty teenager who knows it all. I guess it depends on who you ask, Dusk or me. :-) 
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Friday, August 26, 2016

Where did my friend go?

I always forget.
Every.single.time.

We get discharged from the hospital and we get home, tired - but ready to hit the ground running.
I think "I can totally do this!"
I do all the hospital laundry (because, let's be real, you don't want those germs inside YOUR house!), get caught up on bills, work, and life.
And then, about 2 days after we get home, I hit a wall. 
We ALL hit a wall.
We are beyond exhausted. 

I forget the emotional toll that hospital stays take on us. As any family who has spent time in the hospital can tell you, the post hospital stay struggle is real. When you're in the hospital, you can withstand everything - the stress, the sleepless nights, the procedures, the worry - because you have your trusty friend Adrenaline to help you out.  Guys, I totally pink puffy heart love Adrenaline. She's so sweet and trustworthy. Always there when you need her, like a true friend.

The problem is, once you get home, your brain and your nervous system are still processing everything. And then they get to a point when they look around for our friend Adrenaline - and realize she has left the building. And then they collectively decide "ENOUGH! No more room. No more Adrenaline to keep us going. We are DONE. Peace out."

Except that you're home. So you should be functioning at 100% capacity, right??? Except it's really hard to do when your body and mind aren't on board. And your friend Adrenaline is gone! 

I think it's accurate to say we hit that place today. We tried to do some normal stuff - I went to work for a bit, we took Sierra to ballet, and even went to the movies and out to lunch with some special friends. It was lovely. Really, it was.

But then we came home and did this.
Which was kind of a repeat of yesterday afternoon.
And all I can think about is going back to do more of it tonight.

Geez. You'd think I ran a marathon today. When all I really did was Adult. Sort of. 
It's not even like I'm recovering from surgery, so I don't have that excuse. Maybe I'm recovering from watching surgical recovery - does that count as an excuse? 

So friends, please have patience with us. We will get back up and running. I hope. No, wait - we will - we have to. But it may take us a bit. So please hang with us while we transition back. And thank you a million times over to those of you who have brought us lunches and dinners now that we're home. Because, oddly enough, we need it now more than ever. Suddenly, grocery shopping, meal planning and cooking (usually one of my favorite activities) seems like my own personal Mount Everest. Go figure. 

And keep those prayers coming. Our friend Adrenaline is gone. But our get up and go will come back. Pray it happens soon! And keep praying for Bodie's recovery - each day is a little better for him and we can't wait for him to be back at 100%!

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Thursday, August 25, 2016

Home, sweet home - now the real healing begins.

Bodie was discharged yesterday morning and we were home in time to have lunch with Grandma Jan and Popo Alan, take them to the airport, wash the hospital ick off of us and then take Sierra to karate! Bodie was most upset that he was not allowed back in karate yet (he is free to go back as soon as he feels up to it, but we have told him he has to wait at least a week)!
(this was him at the dojo, goofing off and eating gummy bears)
 In related news, there is a slight chance that Bodie thinks he is capable of doing more than his body can actually do. He seems to have a desire to hit the ground running as though he didn't just have major surgery. I can't imagine where he gets it from?

Now, we work on recovery. He is currently on Motrin every 6 hours for pain. And that seems to be working. Except that I have a firm policy that, unless a kiddo is running a fever (or the med can be given via iv), I will not wake a sleeping child up to give them pain meds. Well, Bodie peacefully slept 11 hours straight (in the same position) last night, so woke up looking like the Stay Puft Marshmallow Man and in a LOT of pain this morning. 
(See - you can totally see the resemblance, right???)

Mornings are tough. We end up in a 2 hour cycle of him feeling too yucky to take pain meds, then finally getting him to take them, then having to wait for them to kick in, but then not wanting to eat which makes him feel even worse. And then he feels yucky while we wait for his Lasix (diuretic) to kick in and get the fluid off of his face. It took about 2 hours to get meds in and working and enough food on board to perk him up. He's now running around the house, chasing the cat and throwing things. So, I may rethink my "no waking for meds" policy at least for the next couple of days as we work through his post op pain.

We so appreciate your prayers leading up to and during Bodie's hospital stay. It was one of the most frightening admissions we have had. I have not written much about the seizure, and may not ever - we'll see. But trust that, while he does not remember and has no after effects, I will never forget. His seizure was absolutely terrifying. I have to take great efforts not to think about it. I find myself ever grateful that we already have a wonderful family therapist who can help me work through the new PTSD I've now added into my already overloaded nervous system. 

As we move forward through recovery, please help pray for:
1. Bodie's incisions to heal (both his thoracatomy scar and his chest tube scar - any heart mom will tell you that chest tubes are not for the faint of heart!) without complication or infection.
2. For us to remain on top of pain meds so that Bodie consistently feels better.
3. He is still having breakthrough runs of EAT (the atrial tachycardia, which was the whole reason we did this surgery). This, while disheartening to Dusk and I, does NOT mean the surgery didn't work. Big picture - if he has less EAT than before, then surgery was a success. Inpatient, he had significantly less than before. This morning, he seemed to have a longer run, but I don't have him on continuous monitoring, so I don't know for sure. Our hope is that, the further out he gets from surgery, and the more healed his body is, we will see less and less EAT. Once we get to his baseline (a few weeks or month out), then we can do a holter monitor and really see where we're at. Please pray for continued decreased in his EAT. 
4. He is still holding onto a little fluid (which all settled into his eye sockets, clearly!). Please pray the small doses of Lasix we're giving him will help expedite its exit from his system.
5. Please pray that any side effects of surgery lessen over time.

Thank you always for praying for our sweet boy!
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Monday, August 22, 2016

Forward progress

Almost 48 hours post-seizure and it appears Bodie has suffered no adverse affects - praise God! We still are not 100% certain, but we are all assuming that it was a med interaction/toxicity issue, likely a combination of Morphine and the nerve blocker he was on through his epidural line. It is odd to discover this at surgery #6, but it became very evident by yesterday morning that his body does NOT like Morphine. He was reacting with a serious "Morphine rash," itchiness and hallucinations. So we stopped all narcotics yesterday morning and spent the day waiting for them to get out of his system. 

Between the seizure hangover and the narcotic wean, let's just say that yesterday was a ROUGH day. Lot of tears. Bodie tends to be emotional anyway, but it was his baseline x 100. I mean, sobbing, silent tears because he thought he had lost a Lego (he hadn't), the Lego instruction book was missing pages (it wasn't) or we couldn't see "the two moving black things" (in our defense, we couldn't, because 1) there was only 1 and 2) it wasn't moving). So, yeah, walking on eggshells all day. Bless Sierra's heart - she came to visit and didn't even care that Bodie was being a total butt to her. She just kept saying "it's ok, he just had surgery. He'll get better." Bless her heart.
After finally getting everything out of his system, he had a really great night's sleep last night. Today has been much better, including a move to the step down unit and finally starting to eat!
Our challenge now is getting all of his meds changed to oral meds, so that we can go home on them. Additionally, they loaded him with fluids following his seizure and he's taking his sweet time holding on to them. As a result, his oxygen saturations are lower than we would like and he is requiring oxygen. We are adding an IV diuretic in the hopes that we can get the excess fluid off of him quickly. Please pray that we can get the fluid off, ditch the 02 and get on home meds! Finally, we are wrestling with some unexpected complications specific to the surgery he had - please pray they are minor and we are able to cope with them and move on. 

Thank you for continuing to pray for our sweet boy! 
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Sunday, August 21, 2016

Morning Update

Bodie had a really good night and, for the most part, slept peacefully. He has woken up a few times and is totally coherent, able to ask to play with Legos and remember our visitors yesterday. He is cranky, but he is here and doesn't have any apparent neurological deficits. Praise God!!!!

The challenge we're facing at the moment is that, prior to the seizure, Bodie had an epidural cathether in his back, providing continues pain relief with a nerve block. This tends to make recovery from a thoracatomy easier. When the seizure happened, they pulled that line, in case it was the meds running through that line that caused the seizure (we won't know this for some time).

So now, he's without continuous pain meds or nerve blocker - and he's in considerable pain. They're treating it with morphine, which is causing him to itch something fierce (and makes him kinda loopy and sedated while it's at it.) Today, we're working on finding another pain management option that 1) does not make him itchy and 2) does not snow him under.

Please pray we can manage the pain and itchiness, and hopefully get him up and moving later today. We still do not know why the seizure happened (although the med cocktail certainly seems to be our current frontrunner for causes). Please just keep him in your prayers!
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Saturday, August 20, 2016

Pray for Bodie

Bodie's surgery was yesterday and by all accounts, seemed to have been a success. We won't know for a bit whether it really did what we were hoping, but it seems to be have been good for him for now at least.

His recovery has been pretty good, working through pain and nausea issues. He seemed to be turning the corner this afternoon, eating more and playing more. I thought we were making progress. Unfortunately, tonight, as he and I were snuggled in bed watching a movie and playing with Legos, he had a seizure.

We do not yet know what caused the seizure (or how we can stop them from happening in the future), but will hopefully know more soon. We did have a CT scan done post seizure, and the preliminary results look good (no brain damage). We are still waiting for neurology to read the report, but the preliminary reads by cardiology are good.

Friends, Bodie really needs your prayer right now. He is currently sleeping off the seizure, and we expect that to last 2-4 hours. Once he is awake, we can do a full neurological assessment to assess any damage.

Please pray:
1. He wakes up with no deficits.
2. We are able to pinpoint the cause of the seizure, and avoid it in the future.
3. Peace for all of us as await answers.

We will update when we know more.
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Wednesday, August 17, 2016

Worst anniversary present EVER.

3 years ago this Friday, on August 19, 2013, our sweet boy had his pacemaker replacement surgery, just 4 days after another open-heart surgery. It was a scary time, but the surgery was a success and really got him on the path to Fontan recovery. 

So, to celebrate his "pacerversary" (that's now a word, in case you didn't know), we're giving Bodie...

ANOTHER TRIP TO THE OR!!!
(Yayayayay! Aren't we seriously the best parents ever???)

Yep, Bodie's surgery that was supposed to take place next week got bumped up to THIS Friday (as in less than 48 hours from now). The rescheduling has been a monumental pain in the butt from a scheduling perspective, but we're trying to roll with it. The bigger concern was that Bodie has nasal congestion, so it has been up in the air all week whether surgery was going to happen.

But we had pre-op today and because his viral panel came back totally clear, he has no other symptoms, his chest x-ray looked great and everything else looks good, surgery is a GO. 
So, yes, not only did we give him an anniversary gift of another surgery, but we toyed with him all week, going back and forth all week about whether said surgery was even going to happen. Life in our house has been SUPER fun this week, let me tell you. Don't you wish you had parents like us???

It's been an exceptionally stressful week and not where we optimally want to feel going into surgery. But it's where we're at. So, as we head into surgery on Friday morning, we appreciate all the prayers you can send our way!

Please pray for:
1. Bodie to go into surgery in the best health possible, for his remaining congestion to clear up.
2. The surgery to go as smoothly as possible.
3. Bodie to have the least amount of pain possible post-operatively (this is probably the biggest request, since we are going into this surgery knowing that it will be a painful recovery).
4. Safe travels for Grandma Jan and Popo Alan, who changed their flight reservations to accommodate the rescheduled date.
5. Calm nerves for ALL OF US!

As an aside, every morning over the past few weeks, first thing in the morning, Bodie would rush to the calendar in the kitchen, wanting to count down the days until surgery (unlike the rest of us, he's pretty excited about the surgery). I wanted him to stop so that I could take a picture of him pointing to his surgery date. 

He was totally uncooperative, and wouldn't point to the 23rd. 
Can you see what day he is pointing to? 
The 19th.
Well, duh.

Except that this picture was taken on August 10.
The day before we got the call about rescheduling.
Crazy, right?

Clearly, Bodie has known all along that August 19th was his surgical date.
It would have been nice if he'd have let us in on the secret.
Just sayin.

As always, we covet your prayers over our sweet boy, his surgical team and our entire family. 


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Wednesday, July 27, 2016

Making good on a promise

Right before Bodie was born, I made him a baby quilt. It was adorable, a mix of greens and yellows, since we didn't find out his gender until he was born. Sometime over the course of his first 5 months of life (almost entirely spent in the ICU), we lost that quilt. 

Bodie did know now the quilt existed, or that it had been lost. Until last weekend when we had some friends visiting who were remarking about a quilt I had made for their (now almost 11 year old old!) son when he was born. In the context of the conversation, Bodie learned about his quilt and was devastated that it had been lost. When he suggested going back to the hospital to look for it, I suggested instead that I just make him a new one, and he could use it for this hospital stay. He was over the moon when I promised him that I would make him a new quilt for his next hospital stay.

Apparently, my son is like me - put an idea in his head and you better push it through to fruition as soon as humanly possible (preferably sooner). So I told him to go look through my fabric remnants and pick out some fabrics he liked. He did. 

He came back with something totally appropriate...for a newborn baby. Think pastels, sailboats, duckies, rabbits. What can I say? I haven't quilted much in about 6 years. 6 years ago, my friends were deep in baby shower mode.

But baby fabrics weren't fit for a brave 6 year old heading into his 6th heart surgery. So I put out a call into my local mom's group and one super generous mom had tons of cool fabric Superhero scraps she sent my way! The entire front of his quilt was made from her scraps - all Bodie had to do was pick out a design (from the 5 I actually know how to do), and pick out fabric for the back and batting and we were good to go. 

I finished it last night, a little less than a week after picking up the fabrics (and we had company in from out of town three of those days). Think that might be my fastest quilt yet. But this face was my best motivation yet.
I'm a perfectionist. The fabric on the back was stretchy and something I hadn't worked with before. It puckered, it pulled and the borders ended up looking pretty darn awful. I had to resist the urge to pull the stitches all out and start again.

But then, Bodie woke up this morning and said "Mama!!! You finished!!! This day could not get any better now that I have my quilt!" I LOVE IT!!! It is the best quilt ever!" 
I'll take that. 
All of the sudden my criticisms of the quilt fell by the wayside. 
All that mattered was that HE loved it. 
And he DOES.
 The best quilt ever for the bravest boy ever. 
This was a promise I didn't mind making good on. 

When I laid it over him last night as he slept, I couldn't help but pray over him, and ask God to grant him some extra superhero powers for this upcoming surgery. 
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Monday, July 18, 2016

The OR is calling

Sigh. 
I wish it was something cool, like "the mountains are calling." 
And, I suppose, they, too, are calling.
But at the moment, the call to the OR is stronger and apparently, it must be answered. 
Proper etiquette and all.
Screw proper etiquette.

To reiterate my prior post about this surgery, this is how we all feel about it. 
 
Bodie's surgical date is Tuesday, August 23rd.

(As a reminder,  He will be having a left cardiac denervation, also known as a sympathectomy. Feel free to google it (really, it's loads of fun, especially when they talk about the potential side effects and complications). In simple terms, they'll be going in through his side to clip the nerves that send adrenaline to the heart. Which, in Bodie's case, is a good thing. Thanks to the CPVT he inherited from Dusk, his body sends too much adrenaline to his heart. The consequences, as we've seen with Dusk twice in the last year, are grave. So, we're doing what we can to reduce the likelihood that Bodie will have a serious episode.)

It's a summer surgical date, so we of course take it with a grain of salt (remember Bodie's Fontan was rescheduled 4 times!), but that's the date we have, so that's the date we're going with.

We're getting everything lined up now, just so we know we're covered. Popo Alan and Grandma Jan are coming out from Reno to be with Sierra that week, so we can know she is well taken care of, and she can come to the hospital and visit Bodie (thank you so so so much, Jan and Alan - we're so blessed by your help!). 

If you'd like to help, we actually could use a few things:

1. Bodie will be having a thoracotomy (an incision into his side), which will be a very painful recovery from what we have been told. He will have at least 1 chest tube, but even so, pneumonia is a known complication from thoracatomies, since breathing is so painful. To ease his recovery, we're trying to find some sort of chest support (think, like a post pregnancy girdle, but that can fit around a child's chest), to provide support to his chest while it heals, and to hopefully enable him to breathe easier. If you are a physical therapist or know someone who is who might know if such a thing exists and where I can get one, please please let me know! This is my #1 goal for between now and surgery.

2. Please pray for Bodie's emotional well being. If you can believe it, he is excited about surgery and to get to play in the playroom at the hospital. We are very lucky that he has a very positive life experience with medical things. Even so, it has been 3 years since his last surgery - that's literally was a half a lifetime ago for him. This is big for him. And the pain will be no joke. Please pray that he's able to maintain his sweet, silly disposition that he's known for - and that we'll be able to make this experience as positive as possible for him.
3. Please help us keep Bodie's spirits up. Unfortunately, in all of its "family friendly" rhetoric, the cardiac unit at CHLA does not allow visitors under the age of 12, other than siblings. Which means that Bodie cannot have any friends visit him. He's super bummed about that. But, he would LOVE cards (he's especially a fan of any cards with Legos or Teenage Mutant Ninja turtles on them, singing cards, and the dancing underwear cards (do they even still make them???)). Feel free to email me for at amykbennett@gmail.com for an address to send them to. I'd love to get a collection to take with us to the hospital, for him to open up at the hospital, to know how much he's loved. Also, he loves videos and FaceTiming - so if you have funny videos you want to send our way, that would be awesome as well. And if you're a friend he/we know personally, I'm certain he would love the opportunity to FaceTime as well! 

3. Please pray for NO complications. Bodie's surgery is at the end of summer, just 2 weeks before school starts. We did this intentionally, so that he could really enjoy summer before being out of commission for a bit. But it also means that complications could make starting school tough. His doctors seem to think being back at school 2 weeks after this surgery is doable. But Bodie doesn't always like to do things the easy way. Please pray for the easy path to be the one he takes this time!
Please pray for the rest of the family. We're all a little uneasy. Of course, saying we're a "little" uneasy is like saying Death Valley is a "little" hot in the summer. We're a lot uneasy. Although we should be very practiced at this whole sending a kid into the OR business, the truth is that it is scary every.single.time. We love Bodie so so so much and cannot bear to think of him having complications. He is our crazy, silly, pain in our butt but we love him SO much we wouldn't want him any other way kid - and we're praying like crazy that the Bodie we send into the OR will be the Bodie that comes out of the OR.
This is hard, guys,
This is, so, so hard.
I try not to talk about it, because, well, it's just not easy to talk about. But my heart is hurting for my sweet boy.

Please pray for peace for Dusk, Sierra and I. Pray for us to daily remember that all of this is in God's hands and that we need to be practicing turning it over to Him daily. We're working on remembering it, but it's not always easy when you're facing big things like this. Of course, we DO know this, we have always known this, particularly when it comes to Bodie. But sometimes there's a little disconnect between the heart and the head. So we'll be spending the next 5 weeks or so working on strengthening that bond. Any prayers you can send our way in that regard would be much, much appreciated. (And, I guess I should specifically say to please pray for God to remind us gently to turn it over to him, not in any huge ole things like our house burning down (his response to my prayers to learn to declutter our house) or sending us another kiddo with a major health crisis (his response when I asked for him to use our family in the Sanctity of Life movement). Sorry, but it had to be said. We've learned our lesson with the big prayers. Ha!)

In the meantime, we plan to continue enjoying the heck out of summer, being so busy that we (almost) forget that we have major surgery coming up! 
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