What happened when I started a 20k/day step challenge?

Okay, so let’s take you back a few years for some background info.  Two years ago, I was on track – working out, reducing portion sizes… getting my act together and trying to finally stop taking my able body for granted.  It worked.  I dropped 42 pounds in nine months and could run – really run – without wanting to kill over.  What a wonderful feeling.  I managed to keep that weight within just a few pounds for about six months after I stopped the weight loss challenges (about a year total).  At that point, I changed birth control.  We knew we weren’t having more kids and I felt okay going with a 5-year plan that I didn’t have to think about at all. 

Well, that backfired big time.  I hadn’t changed much else about my new eating habits, but packed on about 35 pounds in six months!  Holy Hell!  I was working on portions and trying to keep up on some kind of exercise plan, but the scale kept climbing and I was overwhelmed.  I gave up.  Needless to say, two years later, those 42 pounds came back and brought 5 of their friends to the party.  Ugh.  I got rid of that birth control and now I’m out to try to gain back the freedom of feeling like I look okay in my clothes and can endlessly play with my kids without having an asthma attack.  So here I am, with a whole lot of weight to lose… and a plan set up… with you as my accountability partners. 

About two weeks ago, I was reading about and watching YouTube videos on minimalism and I had a new spark for that.  We’d worked on this before, but it was mostly Brandon’s baby and I was just along for the ride.  When I dove into what minimalism meant for a mom… I was sold.  So I spent some time purging my closet of the clothes that didn’t make me feel pretty (ummm… I was left with nearly nothing) and started changing up how I handled household chores.  I’m not going into that all here… I’ll save it for another day, but the feeling of having a house that’s clean enough for surprise guests is unbelievable, y’all.  It’s still not perfect, but it’s drop-in-guest-ready, and that’s incredible.  Maybe you’re always in that position – but that’s never been my reality – not even in college when I lived in a 10x10 box.  I suddenly had more energy because the stress of living in a mess was gone.  I had my evenings to do fun things with the kids because I wasn’t trying to play catch-up on the house.  My weekends were beautiful because I wasn’t drowning in a week’s worth of laundry and a house that had just gotten worse each day.  And the best part about it… my bedroom/office was finally clean enough that it didn’t stress me out being in it all day.

See, I work from home (if you didn’t already know this).  I’ve worked from a home office for nearly seven years now.  As we’ve moved homes, the structure of my office has changed dramatically.  When we moved into the farmhouse in August 2016, I bought a standing desk.  It’s really just an Ikea desktop ($10, I think) with extendable legs ($120 for 4).  It was a cheap way to get me off my butt.  It worked sometimes… but I’d end up piling papers all over my desk and eventually, I’d move my laptop out to the kitchen table where I’d sit for my work day.  Do you know how ergonomically awful it is to work from your kitchen table on a laptop?  Let’s just say that my neck and shoulders were an absolute mess because of this – which lead to severe headaches.  But I could never keep my room/office clean enough to feel refreshed in it, so the kitchen became my office.

About this time last year, I cleaned off that desk again and purchased a desk treadmill to go under my desk.  This made the whole set-up a lot more expensive, but doing it this way was still at least $1,000 cheaper than buying an actual treadmill desk.  I raised my desk up a few more inches to account for the height of the treadmill, and I went to work on it… for a few days.  I’d spend a few hours a day walking (slowly) on my treadmill while I worked, but my legs would get tired and I’d again move out to the table – or over to Brandon’s desk to relax a bit.  Last week, after my fury of cleaning and organizing and purging, I had a clean space again and a new found energy.  I was getting back on that treadmill.  I was challenged to a Workweek Hustle with Fitbit friends, and I nailed that challenge with just under 80,000 steps in five days. 

My Fitbit reading as I am writing this.

 This is my desk set-up.  I love it.  The control panel for the treadmill is the little bar on the right side of my desk.  And for those of you with a keen eye, yes, those are spare G-tubes tucked in there behind the ream of paper.  We have a lot of spare medical supplies, y'all.

This was a HUGE improvement from the activity level I’d had before, and after the first 3-4 days, I wasn’t so sore.  I started sleeping better and waking up before my alarm went off (WHAT?) even if I didn’t jump out of bed right away.  When I rested, I rested well – and again, had more energy than the week before.  I was onto something!  I was averaging about 4,500 steps/day two weeks ago (bleh) and about 15,000 steps/day last week.

That brings me to this week:  stepping up my goal for steps… and trying to clean up my diet some (I’ll post about that later, too).  I’m also starting a very low-end daily workout to get my muscles back into some semblance of shape.  I have a long way to go, folks… but I am literally taking the first steps.  My goal this week is to get at least 20,000 steps a day (I was inspired by a friend of mine to try this).  I killed it on Monday – even after spending some time taking Ellie to a GI appointment in the morning.  Let’s see how I end up today with ½ day of PTO to take Ellie to Genetics – appointment days always mean lots of time in the car and sitting in waiting rooms… and we have a lot of appointment days.  I’m also going grocery shopping later this week to make sure we clean up our diet.  I’m hoping that with these changes, I can start seeing some progress… start feeling like me again.  I’m not using any fancy supplements… no magic pills or potions… just me, some movement, and a meal plan that is very practical and lasting for our family of five.  I’m no short order cook, here, so if I’m making something, we’re all eating the same thing.  I’m not going to sip on a special drink while my family eats.  We eat together, around the table… and that’s not changing.  And a funny little observation if you want to do a similar challenge:  if you’re the owner of a negative thigh gap (like yours truly), do yourself a favor and make sure you’re wearing comfy yoga pants for your stepping adventures.  Jeans and shorts are not friction’s friends.  On that note, wish me luck, y’all.  I’ll update here and there to keep you all posted on how things are going.

Today’s weight: X

[Yes, we’re doing it algebra style because I’m not telling a soul what my actual weight is.  As I lose some weight, I’ll post it as “x-5” because I’m a giant nerd like that and math is my friend (again, friction is not… I hated physics).]

So this is what Day 1 looked like for me... not too shabby.

Jumpin’ Jehosaphat!

Do you remember the very first time your child successfully jumped?  I do.  Wanna know why?  Because A) it just happened this past weekend, and B) this is something we’ve been working on for a loooonnnngggg time.  I honestly thought we were still quite a ways off.  But it happened. 

At 3 years, 6 months, and 21 days old – Ellie jumped.  And today, she even showed her therapist at school that she is now jumping.  I also know the exact day when she took her first solo steps – and jumping came exactly 1 year, 2 months, and 8 days after learning to walk.  Boy, oh boy, did this momma cheer.  It also happened while we were at the Boonshoft Museum of Discovery and I was worn thin from a long day of running and chasing kiddos… and Ellie was being grumpy.  I’d just changed her diaper (which she vehemently protested while laying down) – but once up, she jumped… and turned my grumpy into pure joy.  This kid – I tell ya!  Okay.  That is all.  I had to put this in the blog for posterity.  Carry on with your day!

A big shout out to the MVDSA for hosting our World Down Syndrome Day celebration at the Boonshoft.  Crazy fun - which lead to crazy tired.

Playing in the sandbox/landfill - rubber "sand" is a brilliant idea.

 

Building a tower... and knocking it down with great laughter.

Fossils??  Lance was in his element here.

This is just funny.

Mary and I rode down together.  Her kids were much more calm than mine - JEALOUS!

Here they were all watching the animal demonstration.

Mack and Ellie working in the pizza cafe. 

Logan & Ellie making pizza.

Kaleb was taking orders.

Logan & Ellie learning about recycling... errrr, spinning the gears.

Kaleb & Ellie at the giant water table.

Lance petting the hedgehog

Grant petting a hissing cockroach.  This makes my skin crawl.

Okay - Ellie just drug a whole bag of puff corn out and if I don't go catch her, it's likely to all be eaten in the next 3 minutes.  Monster!

What does World Down Syndrome Day mean to a family like ours?

I thought long and hard about this question over the past week.  See, in our household, we celebrate ability on a daily basis.  We cheer for every inchstone and welcome friends with Down syndrome into our home and into our lives on a regular basis.  Our boys see right through the diagnosis and celebrate the child or adult behind it.  Thank God for that! 

Actually, that’s a little bit of a lie.  They see Down syndrome – they can pick out a person with Down syndrome in any room.  But their world is much different than the one I knew.  See, the day we received a Down syndrome diagnosis for our unborn child, I wept.  I wept for a long time.  My heart was shattered thinking of all of the things my daughter wouldn’t do – or I wouldn’t get to experience as a mom through my daughter.  I had no idea.

I made these shirts for the boys to wear today for World Down Syndrome Day.  When I excitedly showed them to the boys, Lance wasn’t a fan.  When I finally had time to sit him down and talk about why he didn’t like this shirt, something he said really struck me.  He repeated it yesterday when I told him we were taking this photo later.  He said, “I don’t like that shirt because it says that my sister has MORE of something than someone else.  And Mom, it’s not nice to brag.”  WHAT?  At first I was a little taken aback.  I thought maybe he was ashamed to be wearing the shirt… announcing to the world that his sister is different.  Turns out, he was hesitant to wear the shirt because telling the world that she had Down syndrome was bragging. 

Oh, thank you sweet Jesus! 

I didn’t have the heart to tell him that we’re wearing it to CELEBRATE Down syndrome in a world where other countries are celebrating the elimination of babies like his sister.  I didn’t have the heart to tell him that his sister will be seen as “less than” to some people… and we are busting our tails to change that.  I couldn’t tell him that kids like Ellie are institutionalized and marginalized all over our world even today.  I didn’t have the heart to be completely transparent about how I used to feel about Down syndrome.  How would he feel if I told him that knowing his sister had Down syndrome had me in tears for so long?  How would he see his sister then?  I can’t bear to think of that.

To Lance and Kaleb, Ellie is Ellie.  They know she has Down syndrome.  They know that means she has a lot of appointment and that she had therapists at our house all the time.  They know that it will take her a little longer to learn to do some of the things that other kids do – but they also know that in time, she’ll conquer all of the things she sets out to conquer.  Kaleb is jealous that Ellie gets to ride a school bus because she has Down syndrome.  How funny is that?  Well, he just knows that she gets to ride a school bus because she had lots of therapy when she was little and the other kids who ride her bus also had therapy.  But he also knows that she had therapy because she has Down syndrome. 

My boys have their faults, just as every other kid does, but their perspective on inclusion and acceptance is remarkable.  I wish that every family had a chance to experience life as our family is experiencing it – I really do.  It’s incredible.  In a world where the “R” word is still used on a daily basis, we desperately need kids who have grown up with a sibling, cousin, or friend with a disability.  We need their innocent love and respect for all of humanity.  We need others to see that we really do have something to brag about when we know and love someone with Down syndrome.  We need the world to see the ability.  We need the world to see the beauty – even in the midst of struggle sometimes.  We need a world that is proud of diversity instead of a world trying to eliminate it.  We need people with Down syndrome – and they need us to speak up against discrimination and bullying.  They need us to show the world just how amazing life is with them in it.  They need us to educate the public and push for more accurate delivery of a diagnosis.  And I need my boys to show me the way because I did not grow up with a sibling who had a disability.  I did not grow up knowing this beauty.  If someday they’re sitting with their future wives and receiving a diagnosis – I pray that they celebrate it, knowing how lucky they truly are and how lucky their friends and family are to experience this with them.  I pray that they’re eternally better people because of their sister.  Those same little boys fight over who gets to live with Ellie when they’re grown if Ellie doesn’t want to live on her own (notice I said “doesn’t want to” and not “isn’t able to”).  They want to take care of their sister – they absolutely adore her.

THAT, my friends, is what World Down Syndrome Day means to us.  Side note:  this is the first year that we've planned ahead for WDSD and made up materials and such for the kids to bring into school - and the snowpocolypse of 2018 arrived and delayed those plans.  Soooo - looks like we'll be wearing our crazy socks to school TOMORROW and bringing stuff for our classes.  Oh well.  I guess it's appropriate to have patience for something like this, right?

About the shirts:  we're actually having a bunch of these made - with custom verbiage so that anyone in our giant Down syndrome network could order one.  We'll have shirts that say, "My sister has more chromosomes than yours does", but we'll also have ones where sister is replaced with: brother, kid, grandkid, cousin, niece, nephew, and friend.  If you can think of something else you'd like on these, we might be able to work that out.  We'll start selling these soon as a fund raiser for Walk Your Socks Off 2018 (which will be held May 19th).  If you're interested in buying a shirt, keep an eye out for my post soon.

We sent out reminder cards to classrooms that included facts about Ds for parents.  Lance will be reading a book to his 1st grade class and they'll be coloring these butterfly pages.  There are facts about Ds geared for kids on the back of the coloring page.  Each kiddo in Lance, Kaleb, and Ellie's classes will get a sticker with the Ds ribbon that says, "Together we can make a difference" and a bag of colorful goldfish crackers with a note saying, "World Down Syndrome Day March 21st - We are more alike than different"  Cards and coloring page are compliments of Three with a Twist

We didn't celebrate Ellie's 1st WDSD... because it was our 1st day home from Cincinnati.  We celebrated by training our first home health nurse and having a mental breakdown.  The photo above was from 3.21.16

World Down Syndrome Day 2017

Here is a close up of the shirts.  The math nerd in me was super excited to make Ellie's 47>46 shirt, too.  I wish B had taken a picture of the shirt he made last night and posted it... it's pretty stellar.  I made these shirts... the ones we'll sell as a fund raiser will be much better quality - screen printed ones.  

Have I told you that for Pi Day in high school, I made shirts that were covered in colorful bubbles on the back and each bubble had a number in it... I wrote out Pi to the 20th decimal, I think.  The math nerdiness is strong with this one!

Faith in the Valley

Last Friday, I sat through some great discussion at our Life Group meeting.  A topic came up concerning a child who was recently diagnosed with an aggressive form of cancer.  The woman sharing the story said that it was remarkable how strong the faith is in the mother of this child.  She said, “If I were in this position, I don’t know that I’d be that strong and that sure.”  “Yes you would,” I said.  Because I knew for sure what that looked like.  I shared a story with the group that I’ve never shared before… maybe not even with Brandon.  Three years after this event, the feelings were still so raw and deep that I couldn’t get through the story without my voice breaking up.

As I’ve shared many times, a few days before Ellie’s first heart surgery, we were told that the future looked dim for her.  The chances of her surviving the surgery weren’t great – and the chances of her having any success afterwards were nil.  I’ve shared that… but I don’t know that I’ve shared what happened between that day and her surgery. 

We’d just been transferred from CICU (where the staff knew her and me) to the PICU to wait for surgery.  We weren’t familiar with PICU… and we were meeting all new staff members at a time when I was a complete wreck.  I basically spent the next two days sobbing.  At all times, my face was red and blotchy.  My eyelids closed wonky because of how swollen they were and my eyes were terribly bloodshot.  I wasn’t sleeping – who could sleep under those circumstances?  I spent my days rocking Ellie (and bathing her with tears) and sitting in front of my laptop looking out the window at the cold, bleak world in front of me.  I listened to the choppers land on the helipad above us and to Matt Hammitt’s “All of Me” album on repeat and prayed endlessly.  I knew I was about to hand my baby over to surgeons and anesthesiologists – I knew there was a decent chance that I’d never see her alive again.  So I sobbed and prayed and stared out a window, vacant of anything but hurt.  I’m sure that the nurses already had a call in to get me some psychiatric help if things didn’t go well.  I looked like a busted up mess and rarely looked up to meet anyone else’s gaze.

But here’s the thing:  about 24 hours before we were set to send Ellie off to the OR, something washed over me and my prayers turned from begging – to surrendering.  Looking back, I’m not even sure how this was possible, and I can’t imagine doing it again.  But I can tell you with absolute certainty that when you reach the depths of what your heart can endure, God steps in and lets you entrust your future in Him.  It’s hard to explain.  But imagine that your child is scared or hurt… happens to all of them, right?  What do you do?  You bring them in, cuddle them under your arm, and say, “I’ve got you.  You can trust me.  I’ll take care of you.”  Right?  Well, let me tell you, God is that parent… but His love is even stronger than anything you can imagine.  When I was pouring my soul out then, He brought me in… He held me tight and asked me to trust Him.  I knew He’d take care of me.  My prayers changed that morning… and with that, I found some peace, and still had plenty of sobs.  I reached a point in my sorrow where I honestly began to repeat, “Your will be done”.  I had no idea what His will was for Ellie in that moment, but I knew that I was completely powerless in the situation.  I knew that we were either in for a miracle or the most extreme heartbreak imaginable.  Either way, I had no say in how the next 24 hours would go.  I had to hold on tight and let someone else steer.  God looked down and saw his daughter staring in the face of her enemy – petrified of what would be - hope waning as she held her own baby.  He gave me strength and peace in surrendering Ellie over to Him.  

In the wee hours on the morning of surgery, I was up holding her, rocking her in her sleep.  I was humming the words to the Matt Hammitt song I loved so much (humming because I couldn’t physically make any words that morning).  When the nurses came in, Brandon and I gave her the pre-surgery bath of cholhexadine and the smell of those wipes is still ingrained in my memory.  We handed her off that morning and fell into the arms of our parents as we waited those long hours.  But the tears were gone… maybe I’d completely run dry of tears.  The awful period where I poured my soul out for days on end was over.  There was a peace that wrapped around me like a warm blanket.  It allowed me to talk and laugh and focus on our family while we waited for her surgeon’s report.  God was there.  He pulled me in just as I have my children many times, He held on to me and begged me to trust His plan.  He let me know that He’d take care of me no matter what and He loved me.  Never in my life have I been so sure of who my heavenly Daddy was! 

I’ve met countless other parents (mostly moms) who have walked similar paths.  I can tell you that everyone prays in that surgical waiting room.  I can tell you that when things are the worst, faith runs full throttle.  If you want to see faith that can really move mountains, talk to a parent whose child is critically ill.  Is it awful that faith shows up stronger than ever in times like these?  Maybe.  But I can speak with absolute confidence when I say that we have a God who protects, who loves, who strengthens the weak.  We have a God who nourishes and speaks life into you when you cannot go on.  He takes you in under His mighty arms and asks you to trust in Him.  He performs miracles and gives peace when the miracles don’t happen on this side of heaven.  I know this because I’ve seen it with my own eyes and felt it in my own heart. 

We don’t have to be at the end of our ropes to trust in Him.  We know that.  He loves us and cares for us in our tiny “emergencies” just as He does on our darkest days.  Over the past week, I’ve been trying to focus on getting back to the place where I heard His voice… back to the place where I knew He was there beside me every day.  I don’t want to be back in the hospital to know this.  I need to seek Him out in my daily life because I know what it feels like to have Him sit next to you and wrap you in His endless love.  I need that on my worst days, of course, but I need to seek it more on my good days, as well.  I have a few people in my life who are staring their enemies in the face right now… women who are walking into some of their worst fears.  I pray that they feel God’s presence in a tangible way right now.  I pray that they can see that the enemy is a liar.  There’s a song by Zach Williams called “Fear is a Liar” and it’s been running through my brain lately – I think it’s a song that can help these women… and can really speak to us all.  I love you all and pray that you feel God’s presence in your life… that you know He takes you into His embrace to bring you comfort and peace – even in the midst of a storm.

A look back at that very dark time for us… plus some recent happiness below.  Thank you for following along.  If you need some more musical inspiration… Toby Mac is one of my favs.  Listen to “I just need you”.  He quotes Psalm 23 in it… and it’s perfect.

I couldn't look at the camera with my busted up face.  

Holding Ellie before we had to give her the pre-surgery bath.

Can you feel the weight on his shoulders?  Ugh.

Buggy right before she was wheeled into the OR.  I'm pretty sure she's praying, too.

Fast forward to the present:

Kaleb during his wrestling banquet this weekend - with coach, Daddy

Earlier last week - a sick Kaleb

And a sick Buggy... finally sleeping.  She's a monster when she's sick.

We had one nice day in Ohio... nice enough to play outside after school

Kaleb painting the planets for his solar system

And Lance - with a little more precision in his painting.

Kaleb at the playground (on the one nice day)

And Lance spinning on the swing

Ellie reading a book to her baby... sooo sweet.

Psalm 23

1 The Lord is my shepherd, I lack nothing.
2     He makes me lie down in green pastures,
he leads me beside quiet waters,
3     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
4 Even though I walk
    through the darkest valley,
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

5 You prepare a table before me
    in the presence of my enemies.
You anoint my head with oil;
    my cup overflows.
6 Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.

Unromantic toilet dino donuts

This is going to be the most unromantic Valentine’s post you’ll read today, but hear me out.  First, I’m not the one who’s good at being romantic… not at all.  When you see my little boys fight over who gets to open doors for me, they didn’t get that from me – that’s all Brandon.  He’s been the romantic one from the start.  When we were in college, he was always doing things that were over-the-top romantic – even if it was “finding” a few dozen tulips at 2am on the way home from a night out with friends.  Ha!  I’m usually the optimist, he’s the realist, but he’s still romantic.  He’s thoughtful and brings me surprises still.  We’ve now been married for eight years – in this relationship for twelve, and while in the grand scheme of things, that’s not long – I’ve learned a lot.  Let’s take a look at romantic Valentine’s greetings and break them down marriage style, shall we?

-          “You’re my best friend.”  This one is true-ish.  My husband is my best friend, but it’s really important that we each have other friends, too.  It’s important that we spend time with those friends because their bonds help strengthen ours.  Okay, maybe I’m throwing this in here because I have a lot of outtings with friends – hahaha.  I’m very social – I need them.

-          “I couldn’t live without you.” This statement is hogwash.  I could live without my husband.  Literally, yes, I could.  But do I want to?  Nope.  If something tragic were to happen to him, I’d be devastated… but I COULD go on living and working and being a mom.  My heart and soul would never be the same, but I am a strong, independent woman and I could physically go on.  I’m not dependent on him for my identity, my happiness, nor my sanity (okay, I lied about that last one).  I’m not dependent on him for my wellbeing, my health, or my ability to maintain a household.  Would I struggle?  Absolutely.  But the point here is that I don’t NEED him to live… but I very much want him in my life every day.  It’s not about NEEDING someone – it’s about WANTING them there.  And I think wanting someone by your side forever is actually better than needing him there.

-          “Loving you is easy.”  This one just hurts to say, honestly.  Love and marriage aren’t easy.  Maybe they are for other people, but they’re not for us.  This takes work, y’all – and sometimes that work is ugly.  In the twelve years we’ve been together, we’ve trudged through the gutters of addiction, depression, anxiety, brokenness (and broke-ness), and hardship – those are all in addition to the stresses of raising a medically complex child.  While I truly feel like these experiences have made us stronger, when we’ve been in the thick of them, life was downright hard.  Choosing to stay together (when going it alone sounded easier) was the best choice we could have made.  Are we worn and ragged?  Yep.  Are we worn and ragged together?  You bet.

-          “You are the best spouse… best parent… etc.”  I know for certain that I am NOT the best person for either of these jobs… and neither is my husband... but love and grace go a long way here.  I’m not the best mom and I’m certainly not the best wife, but I do try… and effort counts twice.  The most important thing on this one (for us) is that when your partner fails, toss them a frickin’ life line, okay?  B knows when I’m drowning as a mom – I know when he’s drowning as a father – if we just make a point to be that little voice of encouragement when things suck, then hey – we’ve given grace and loved hard through those yuck times.

-          “You’re always supportive and loving.”  Bahahaha, I can’t even keep a straight face for this one.  My husband is incredibly supportive and he’s incredibly loving – but always?  Nope.  And neither am I.  I’m far more guilty of this than he is, though… FAR.  I need to work on that.  We’re human.  We’re faulty.  And sometimes, we’re downright mean… even to each other.  Do we let the ugliness grow like a cancer?  We try not to.  We’re both very stubborn and we each have a special talent at returning fire with fire.  We’ve been working on this for years.  Don’t for a second think that either of us let the other walk all over us.  We each have a little of that honey badger mentality when we need it. 

-          “You are my soul mate – the one person that God placed here for me.”  I tend to believe in fate, but I do not think that God placed ONE person on this earth for me to find, marry, and live happily ever after.  I actually think that God placed a bunch of people in this world that I’d need (not necessarily in a romantic relationship, of course)… and through different seasons of life, they’ve taught me the things I needed to be taught in order to grow into the person God intended me to be.  Do I think Brandon is the right person for me to be with forever?  Yes.  And honestly, being with him has unquestionably taught me more about life and grit and grace than any other person has taught me. 

-          “You make me a better person.”  I don’t have a single argument against this one.  Despite all the other contradictions I have above, I really feel like my husband has helped mold me into a better person – and I think that he’s a better person than the day we met, too.  So I think this one is holding true for us… and really, it’s my favorite on the list.

Okay, so this is all the cliché Valentine’s Day greetings I can think of right now.  The truth is, marriage is not at all what I thought it would be when I was a starry-eyed teenager – but neither is adulthood, in general.  Adulting is hard – so is marriage.  Marriage takes work and grace (and love… but I knew that before).  The cool thing about it, though, is that if this was easy, it’d also be easy to dismiss.  When I look at my husband, I can fully appreciate the person that he is today – the person that he became through work and hardship and love.  I hope that he sees the same in me.  I sure don’t look the same as I did when we started dating (sorry about that, B)… but I hope that when he sees me, he sees so much more than this shell that carries my soul.  That soul that I swore in front of God and our families that would be joined with his forever.  For better and worse (check) richer and poorer (check… still waiting on that “richer” part), and in sickness and health (check).  Marriage isn’t what I thought it would be – it’s actually deeper and more than I thought before.  The roller coaster of it all sure makes the hills all that sweeter – it makes the valleys bearable.  Here’s praying that our children grow up seeing us work through marriage – work through our hard times and live it up during the best times.  Let’s hope they come out with an understanding that this is a partnership between two people and God and some days are harder than others, but it’s all worth it.  Are we the only ones in this boat or can I get an amen?

Now to explain the title of this post… hehe.  You already saw the unromantic part (that’s me, basically), “toilet” refers to Lance’s Valentine theme, “Dino” refers to Kaleb’s Valentine’s he brought today, and “Donut” refers to Ellie’s Valentines and snacks she’s bringing to school.  We’re a weird messy bunch… and that’s the truth!

And here are some photos of B and I through the years!!

These are the tulips B "found" for me on his way home from uptown.  He said there were so many that the dentist's office wouldn't miss them.

2006 - We'd only been dating for about a month here, we're babies.

2007 - Christmas pictures at Miami

2008 - bowling alley fun

2009 - we used an engagement photo to make this... the cover of our wedding invites

2010 - About to get hitched in Gatlinburg

Married!

2011 - A family of 3

2012 - A family of 4 (Kaleb isn't so visible here)

2013 - Vacation to FL

Fall of 2013 - still one of my favorite pics of us

2014 - First family photo as a family of 5 (in Cincy)

2015 - the day before we left for Boston 

2016 - B's graduating with his LPN

2017 - With sensitive Santa

ABCs

Have you ever caught yourself visually tracing the contours of your child's face in the wee hours of the morning while they slept?  No?  Me, neither... well, until Monday morning.  Who has the energy to wake up before the kids and watch them sleep?  Not this girl.  However, Monday morning, I could hear Ellie jabbering through the monitor before 5am.  By the time I made it up to her room, she was sitting upright unraveling her pulse ox probe and had turned off her cool mist machine.  I scooped her up, changed her diaper, and headed back to bed hoping to get her back to sleep in my arms for a while.  She fell back asleep quickly, I, on the other hand, started reeling through what my day held... and couldn't sleep.  At some point, I stopped daydreaming and looked down at her sweet face, snoozing away in the crook of my arm.  I whispered a prayer thanking God for this crazy little girl that I never knew I wanted.  I mean... I wanted a girl... I just never thought I needed one so wildly different.  But she's changed every ounce of who I am and in that early morning moment, I was eternally grateful.  I'm glad I had these few minutes with her as just a few minutes later, I was alerted of school closings and soon realized that a day of chaos was about to ensue.  On to the topic I really want to lay out, though...

Elz was originally diagnosed with severe obstructive sleep apnea when she was just under three months old.  Since then, she's had nine sleep studies and a boatload of procedures to help this and fix the myriad of other wonky things she had/has going on.  First, there was the nasal cannula to increase oxygenation, then the trach and ventilator.  Then we weaned off the vent and onto bipap, then onto just a cool mist collar around her trach at night.  We still need oxygen bled into that line a few times a week, and she still sleeps with a pulse oximeter on her foot to make sure we know when her oxygen saturations dip lower than we want them to.  Her saturation goal is 90%.  Have you ever had an oximeter reading of 90%?  I haven’t had mine taken often, but when I was really sick and felt like I had a bag of cement on my chest, my reading was 93% in urgent care and they gave me an albuterol treatment that finally made me feel like I could breathe.  So a saturation of 90% feels awful to the rest of the world… but Buggy has always been a bit different.  When she was little, her goal was to stay above 70%... but that was a cardiac thing and we’re not living in that world anymore (thank goodness).

Anyhow – back to my story – her sleep apnea was always an issue, but it didn’t take center stage until after we tackled the most life threatening issues she had.  Raise your hand if you’ve taken a CPR course.  How many of you remember that you had an acronym to remember the priorities you check (okay… this is before the hands-only CPR method… I’m old school)?  You checked your ABCs, right?  Airway – Breathing – Circulation.  For Ellie… her ABCs have been jacked up from the start.  We addressed them in reverse order… but we’ve addressed them all.  Circulation trumped all others in her case, so we had those issues fixed in her first 9 months of life.  Breathing was the next hurdle… and we were pretty sure we had cleared that one once we were able to put the ventilator on standby.  And airway, she’s had a ridiculous number of surgeries to stabilizer her airway and has had that handy dandy trach in place for three years as a crutch until we get to a solid place for her airway. Once we have her airway on solid ground… I feel like we’ll smash A and B out of the park.

Now that we have some background, let’s jump into the present.  Ellie had a sleep study done in mid-December where she slept with a capped trach.  So all of her breathing had to happen from her mouth/nose while she slept (remember that she hasn’t had to do this since she was two months old).  We made it through the whole night and anxiously awaited the call from her specialist to give us results.  They hadn’t rushed in through the night and uncapped her, so I knew this sleep study had gone better than her last.  I was cautiously optimistic.  Her ENT called me on Monday to go over results.  Here’s where we’re at now:

•       Ellie’s shown marked improvements in her ability to breathe while she sleeps.  In the past, her apnea-hypopnea index was in the 60s (double the threshold for severe sleep apnea).  Now, it’s measuring 26.  So she’s only half as bad as she was in April 2017.  That’s good.  But 26 isn’t great, either.  We’re getting there.

•       Ellie had no episodes of complete obstruction – this is fantastic – removing three tonsils and her adenoids and some tissue from the inside of her trachea has helped tremendously here.

•       She had 1 episode of central sleep apnea (this is where the brain forgets to breathe).  Sounds awful… but 1 episode isn’t bad.  The crap part about CSA is that there is no way to fix it… it has to resolve on its own.  Her doc wasn’t concerned about this, though, so neither are we.

•       She had 231 episodes of incomplete obstructive apnea.  Ugh.  So 231 times during the night, she stopped breathing.  That’s roughly once every two minutes that night.  The length of her apnea episodes lasted anywhere for 17 seconds to 44 seconds and dropped her oxygen levels between 82-89%.  This means that she's still in the "severe obstructive sleep apnea" range.  Frickety frack.

Needless to say, with results like those, this trach isn’t going anywhere right now.  When she was inpatient last week, we also got a new diagnosis of reactive airway disease (RAD) [think: asthma].  So we’re kind of bummed out about it all.  It’s not horrible.  We’re realistic… and we’re used to this trach life… but I’m not over here throwing a party, either.

Her doc said, “How do you feel about this, Mom?  What is your breaking point for the timeline on the trach?”  Ha!  I told him that we’ve had the stinkin' thing for three years now, so it’s not like it’s anything new and it’s not like we have a huge adjustment to keeping it.  And while, OF COURSE I want it out… I fully realize that she has to be able to breathe AND sleep… so we’ll hang out here for a while longer.  He said we’re probably looking at a solid year yet – maybe two.  And in response to his question about my breaking point, I said, “Right now we’re okay.  We have a plan that works.  She has the care in preschool and home that is good for her and a staff that’s very capable of taking care of it with us.  I really don’t want her to go to kindergarten with it, though.  That’s 2.5 years away and I REALLY don’t want to do that.”  Of course… if that day comes and we’re still in this position, we’ll do it… but I’d rather not.  He said that seemed pretty reasonable and we spent the next long time talking about the things he thought might be causing distress still… and interventions we could work on to address them.  Some things we can do in the next year:  a sleep endoscopy, a tongue resection (if needed), fixing the suprastomal collapse in her trachea.  Some of the ideas (if they’re the culprit) are things she’s just going to have to outgrow: a small nasopharynx and tracheomalicia.  So from here, we plan to go back into the OR for a sedated sleep endoscopy to help evaluate her airway during sleep with a camera.  This would help us determine the next steps… and we’ll have this scheduled sometime in the late spring/summer time frame to keep this trached kiddo away from the hospital if at all possible during cold/flu season. Dr. Elluru (her ENT & surgeon) is also bringing in Dr. Kalra (pediatric sleep medicine) to help handle our case.

During our stay in TCU last week, along with the RAD diagnosis, we were referred to work with our pediatrician on getting answers to some new questions on storming, too.  We like to keep Dr. Smith busy, I guess.  So we’re diving into the possibility that storming (in Ellie’s case) may be related to cyclic neutropenia.  This would mean that Ellie’s white blood cell count would dip in a cyclic fashion… and that, in and of itself, would throw Ellie into a storm and also make her SUPER susceptible to sickness.  This might make sense… but is all new to me.  We’re bringing the Infectious Disease team on board to see if they have any suggestions or ideas about this. 

For now, we’re just taking things as they come and bouncing around to see if we can come up with plans and such that make sense for us… that make sense for Ellie.  I can’t say enough how fortunate we feel to have a team that is crossing all Ts and dotting all Is as they try to do what is best for our Bug.  She sure is a complicated little booger.

And for following along through my vomit of medical jargon, here are some recent pictures of our crew.  Thank you for continuing to care, for continuing your prayers, and for drudging through this weirdness alongside us.  We love you! 

Some light reading as we checked in for the sleep lab

Sleep study #9:  I'll never understand how anyone can actually sleep like this.

Have you tried Kiwi Crate?  It's super cute and your kids can do projects each month.  This month, the boys made a stethoscope (that works), and sewed these plush organs to put on their body... and made glow in the dark x-rays.  Cool stuff!

Buggy on Christmas - it's not often we get a still shot of this busy body

Dressed as Moana, holding Moana, watching Moana... can you tell it's her favorite?

Christmas with great grandma Shuster

Christmas with great grandma Ward

Big cousins are the best - Andrew cuddling with Kaleb

Please tell me that other people's kids steal their phones to take silly face selfies while going potty.  He took about 42 photos and 3 videos of him singing me songs.

Grandma & Grandpa Schroer on Christmas Eve (at grandma Shuster's house)

Mamaw and Papaw Maier on Christmas

Ellie decorating her hospital bed

And watching Moana... for the 8th time in 3 days.

Papaw Ward & Stacy visited for Christmas, too!

We got a movie projector for Christmas.  Best. Gift. Ever!  Now we have movie nights and project a 12' screen on the wall.  So worth it!

Mook was drawing pictures in the lobby of Dr. Smith's office.  He said, "These are birds.  This is a hurricane."  I said, "Like two sparrows in a hurricane?" and chuckled as the song played in my brain - yeah, Tanya Tucker!