Tuesday, December 30, 2014

Looking Back & Ahead

Tomorrow is the very last day of 2014.  It is unbelievable how quickly 365 days can pass in our busy lives.  I find myself flying through life, barely able to remember what I did the day before.  I love doing a year-end post because it makes me actually stop and think about all that blessings I have been given this year, but also see how I have come through the difficulties.  The blessings are wonderful and sweeten life just that much more, but looking back on the not-so-good things, in a way, is a blessing too.  It means that I have come through a storm.  I have a new perspective, perhaps a more sympathetic heart and often a renewed faith.

What's great for our family is that this lil' blog also serves as my scrapbook for each year.  This is amazing for me, as the thought of even crafting up one year in a scrapbook sounds absolutely miserable to my non-crafty self.  So here's my clifnotes version of 2014 in review.

In January, we endured insanely freezing temperatures, feet of snow and managed to sell our house.  I briefly escaped winter in February, flying solo with Elena while seven months pregnant to visit my parents in Arizona.  I survived it and was able to thaw out in the sun for a week.  On March 1st, we found ourselves new residents of the 'burbs and began settling into our newly remodeled home.  This promptly sent me into panic mode having less than two months before baby #2 arrived.  In April we died over the cuteness of watching Elena ride her horse in hippotherapy, savored our last moments as a family of three and celebrated the biggest moment of our year!  Our 9lb 7oz Calvin Merrick arrived on April 26th!  May, I don't remember.  I had a newborn, a three year old, a busy schedule and little sleep.  June brought slower schedules, a little more sleep but painful reminders as we watched Cal grow and develop, remembering the short time we had with the old Elena.  In July, we received another great boost from Elena's doctor in Pittsburgh, celebrated her three years of life and my thirtieth birthday.  August was a happy one.  We traveled to Charlevoix, Michigan then turned around and flew to Amelia Island, Florida for vacation with Chad's family.  And somewhere in between Chad and I celebrated our five years of marriage and Elena's first day of preschool.  We giggled our way through September, watching Cal lose his "scowl" and start to develop his sweet little personality.  In October the temperatures begin to dip and so did our hearts.  I spent the month stressing over Elena's looming surgery and all the preparations that came with traveling half way across the country for it.  November began celebrating our beloved Ronald McDonald House and a perfectly timed "calm-before-the-storm" getaway to Arizona.  This, of course, was followed by Elena's hip surgery and lots of stressful days and nights.  And finally, December.  It's been the hardest month this year.  It has challenged me as a Mom, a wife and as a human being.  It's been rough and I'm so looking forward to a new month and a new year.

Whew.  It all seems so compact and tidy, but I know otherwise.  It's life.  It's messy, complicated, emotional, blessed, beautiful and happy.  Most of all, it's temporary.  Every difficulty, every tear, every high and every low will pass.  It's definitely not always quick and easy but I know the sun always come back out.

As for the new year, my resolution for 2015, is to savor each day I am gifted, reflect more and to attempt to keep the chaos of it all from consuming me.  I want to give thanks more than I complain and cry happy tears more than sad.  I want to be a better wife, mother, sister, daughter and friend.  I want to be a better Emmalee.  And more realistically, (ha!) I want to write more.  Writing is very cathartic for me.  I hope to journal more for myself and blog more for all you who are so supportive of our family.

I hope each of you has had more highs this year than lows and that 2015 will bring the same!  Thank you for continuing to love and support our family...we love you all!

Sunday, December 28, 2014

Christmas & Birthdays

With all the exhaustion that was December, we were able to muster enough energy to have a wonderful Christmas celebration.  It was a whirlwind but we shared a great time with family!  We were able to enjoy being at home and were spared of most travel thankfully.

The day after Christmas was Cal's eight month birthday.  Time really is flying by.  I'm going to be planning a first birthday party before I know it!  For now, he is keeping us all on our toes.  He is moving all over the place.  He can get up on all fours and move, but he really prefers the army crawl as it's most effective for him.  Just yesterday I watched him crawl then move himself into a sitting position, a new move for him!  He had just been able to lay on his side and prop, not fully sit.  He is literally changing every day.  Eating is still a favorite for him.  He seems to be getting his "pincher" grip down and is able to pick up some foods and feed himself.  He's still not that comfortable with different textures yet though.

I've started to notice him noticing us when we leave the room.  He'll pout or shriek (a favorite noise of his to make) whenever we leave the room he's in.  Speaking of shrieking, he loves to see just how loud (and high-pitched) he can make his voice.  It's pretty effective and he, of course, thinks it's hilarious.

Cal is proudly sporting six teeth.  He got all four uppers pretty much all at once.  Just like his big sis though, he could care less about teething.  We barely noticed he was getting any until we could see the whites poking through his gums.  Both kids must have my pain tolerance, not Chad's :)

He's really such a happy kid.  He brings so much energy and happy smiles into our house.  He and Elena make a hilarious team and we love watching them interact.  What sweet little babies I have!

As for the other birthday in our house, Chad celebrated the big 3-6 yesterday.  Although the Hoosiers lost, albeit in overtime, he said it was still a good birthday!  Thanks to Gramma & Grampa Frey, we actually got to go out.  It was nice to have a date night and celebrate my handsome husband!

For now the celebrations are over!  That is until our wild New Year's Eve...ha!  Hope everyone had a very Merry Christmas with their families!








Saturday, December 20, 2014

Writer's Block

I'm not quite sure if it's being tired, not getting enough rest or the exhaustion, but one of these has been responsible for my zombie-like behavior of late.  Yeah, so Elena is still not sleeping.  And life this month has been insanely crazy.  Add in a dash of Chad traveling what seems like every day this month and a pinch of not getting out of the house with a post-surgery toddler, and you have misery.

Ok, I may be a little dramatic but I think December has been one of the most challenging months I've had in a really, really, really long time.  It's usually just a tough week here or a bad couple of days there, but the whole month has left me drained.  Merry Christmas?

Elena, thankfully, has recovered from those awful muscle spasms she had been having only to suffer from something 100x worse (well, in my opinion anyway)....only sleeping with Mom and Dad.  Unfortunately for us, there is no medication for re-teaching your child to independently sleep.  I mean co-sleeping is the antithesis of every thing I believe in as a parent.  I'm a sleeper.  I want my kids to be sleepers.  And when my kid doesn't want to sleep unless I'm squeezed in her twin bed with her or she's nestled (metal brace and all) between Chad and me (and Pete), it is misery.  I get it, she's three and she's been through a traumatic surgery and she got to sleep with us while traveling to and from New Jersey.  Not to mention we would come running in to calm her down in the couple weeks after her surgery, but she is milking it now.  Our nights are pretty brutal.  All of this makes for long, tough days.  I think I'm due for a month long vacation from life.

The exhaustion has left little time for anything else at this point.  I'm left unable to sort out my emotions or have any time for introspection...two things that I actually do quite frequently.  I need to purge my feelings either through writing or crying!  Either way, I'm too tired.  I'd say I have a bad case of writer's block.  I hate wishing time away, but I'm praying every day that this phase of Elena's horrible nights will pass quickly.

Ugh.  Being a parent is really hard.  Tonight I'm going to drain a glass of wine, go to bed (before Elena can wake back up) and dream of my early 20's.  Goodnight ya'll, this was all my brain could muster.

Tuesday, December 9, 2014

Arizona Vacay

This spring, we had planned a family vacation to Arizona.  When Elena's surgery got moved up, we were debating on whether or not to cancel.  Though it made things a bit more chaotic, we were so glad we went.

We scored a deal with the Westin (and had to listen to an hour presentation on time shares of course!) to stay at their beautiful Kierland Resort in Scottsdale for four days.  Then, we had planned to spend three more days with my parents, but cut it a little short because of New Jersey.  It all worked out and we had a blast.  My parents kept Elena and Calvin the first three days, which gave us some time to spend with our dear friends who flew down from Seattle for a few days.  We had SO much fun!  

My parents brought the kids back to the resort where we spent another day and half enjoying some pool time with Elena and Cal.  We checked out on Wednesday morning and headed to my parents for the day.  While the Westin was beautiful, I have to say the service was far better at my parents :)  My Mom flew back with us on Thursday.

We had one day to unpack, do laundry and repack, then took off Saturday for New Jersey.  It was a whirlwind, but gave us some great time together as a family, and gave Chad and me a nice little break from parental duties!  

I'm ready for another vacation :)

 Laney & Grampa Frey

Out for a walk at the Kierland

 Gramma & Cal at the pool

 Family bed :)

Moms night out!  

Chad & Adam

Thanks to Gramma & Grampa for watching the kids so we could have a vacation on our vacation!  And thanks to the Corson's who brought the fun!  We had a blast!

Sunday, December 7, 2014

7 Months

Cal is seven months old!  Well, ten days ago....ok, so I'm a little behind.

I'm finding myself wishing I could capture every single moment and hold it forever.  He is SO fun.  I can't even begin to share how much he has enriched our lives.  Elena included.  I think she finds him just as funny as we do.  Everything is new, exciting and happy.

Let's see, this month (like every month) has brought changes.  Cal is sitting really well all by himself.  He's still loving food and has started grunting (must be a guy thing) when he's eating.  It's pretty funny.  He loves to squeal as loud as he possibly can and thinks it's even better when you squeal back.  He's not quite crawling yet, but he has the army crawl down pat.  Cal definitely gets where he needs to go!  We love to watch him roll all over to get that toy or better yet, Pete's tags.  Speaking of, he has really been into Pete this month.  He watches him wherever he goes and always want to grab his ears or his dog tags.  Pete, for once, is actually a good dog and lets Cal do whatever to him.

Cal's up on all fours a lot, rocking back and forth.  He'll get his knees to move but hasn't quite figured out how to move his arms without falling on his face.  It's so fun to see his little wheels turning as he attempts a new move.  He has a "pose", too.  He'll roll over onto his side, cross his ankles and lay one arm on top of his legs.  It definitely makes him look like he's posing for Mr. December 2014.  It never fails to make us laugh!  

Cal is working on new sounds.  He has accomplished "das", "bas", "ohs", "ahs" and "ooos".  This is in addition to high pitched screams and grunts, of course.  Sounds like he is quite the caveman :)  Elena loves when he "talks".  They get a little back and forth banter going sometimes and Chad and I about die over the cuteness.  A lot of times, Elena will just roll with giggles at him.  I can't blame her, we do most the time too.  It has been so fun to watch how he entertains her.  I can only imagine what these two will be like together...makes my heart happy.

He had quite the adventures this month!  He took his first trip to Arizona (which I'll post about later), stayed with Grandma when we took Elena to New Jersey, and had his first Thanksgiving.  He is such a good boy.  When we were in New Jersey t was my first time away from him for an extended period.    It made it so much easier to know he was in good hands so we could focus on Elena, though it looked like he had aged ten years when we came home!

Our little guy continues to be an enormous blessing in our lives.  It's crazy to think that seven months ago, we were so unsure how he would fit into our lives and our routine, let alone how he would be with Elena.  He truly is God-sent.  He fits so perfectly into our little family that I can't even remember how we functioned without him.  

 The "Pose"

 All three of my boys!

 7 Months Old!

 Sneak peek of his 6 month pics...more to come!

My Mom pulled some pictures of me as a baby to confirm that the chipmunk cheeks were indeed an inherited Frey trait :)  I had hoped for a mini-Chad, but it appears Cal may be a mini-Mom!

Friday, December 5, 2014

What Day Is It?

Ok.  I'm sorry.  I've been meaning to post on the blog for dayssss now.  But, I can't remember what day it is.  It has been a very tough two weeks, way tougher than I had anticipated.  It has fully proved my theory that it's best to anticipate the absolute worst, then be pleasantly surprised by how well it turns out.  In this case, I had in my mind that we would all get through surgery easy peasy and then bounce back in no time at all.  WRONG!!

I'll start with the positive.  Elena's really is doing great.  Her incision is healing nicely.  Her days are pretty pleasant, boring, but she's content.  Moving her around is getting easier and less painful for her.  She's been off pain meds for over a week.  She's done really great in the few therapy sessions she's had and has been tolerating lots of stretching.  The best part, we're starting to see the real Elena again.

The tough part....we're not sleeping.  Not like...I-have-a-newborn sleeping and I'm up every 2-3 hours feeding him.  Like, sleeping a total of two hours at night.... non-consecutively..... for days on end.....with a hysterical three year old....who can't communicate what's wrong.....and is miserable from about 11:30pm to 5:30am.  Chad and I have been barely functioning.

Desperate yesterday, we called her surgeon and our friend Lara, at the Jackson Center.  In short, we determined that Elena's probably suffering from muscle spasms and the worst reflux she's probably ever had.  That, turns out, is about the worst combo EVER.  Poor baby.  We're praying that medication can help her relax enough at night to get some sleep.  Last night was a smidge better (with the meds), but we all still need way more rest.

So, that's that.  And about all my brain can get out right now.  I'm way behind on posts and have some catching up to do.  I'll get back to you!

For now, here's some pictures of our girl:

Here's Elena yesterday upright, in her brace, laughing at her brother.

All bundled up for the Zionsville Christmas parade

With her BFFs Brennley, Hudson and Amelia at the Christmas parade 

Monday, November 24, 2014

Home!

Hey All!  I'm definitely short on time but I wanted to thank all of you for the continued prayers and let you know we made it home!

Elena turned the corner Thursday afternoon.  We were able to pull back on meds and get her out of bed on Friday morning.  The doctor came in and told us we could go whenever we wanted.  So we loaded up and left!  Elena did great the whole way home.  We got home Saturday.

Things have still been rough.  She's still in quite a bit of pain and moving her is really tough.  She's definitely a two person job right now.  But, we're home!

We still need prayer as she recovers and that each day will get better.  Thanks for loving and supporting our family!

xoxo
Emm

Thursday, November 20, 2014

Day 3 Update

Good Morning All.  I want to again thank you all for your continued prayers.  We've really needed them the last few days and have so appreciated the calls, texts, emails, love and support you've continued to give us.  It certainly makes this situation easier knowing how much support we have.

Unfortunately, the surgery has been the easy part.  Chad and I both have been completely caught off-guard by how difficult the last two days have been.  Our brains were so focused on the actual surgery, that I guess we didn't realize the recovery could be 1000% worse than the surgery.

I'm not going to sugarcoat it (though I never do...) the last two days have been pretty brutal.  Seeing Elena struggle with the pain, discomfort, fear, confusion, disorientation has been heartbreaking.  We are simply at a loss of what to do.  It's pitiful to see her so out of it on all the pain meds, but the alternative is having her in hysterics and in pain.  She cried for five hours straight on Tuesday after coming out of the anesthesia.  Finally, they gave her a large dose of meds that knocked her out and have pretty much been keeping her on heavy pain meds since then.  Our theory has been to just keep her as comfortable as possible.  Her being unable to communicate if she's nauseous, if her belly hurts, if she's hungry, if she's in pain, if she's scared has proved incredibly difficult.  We're basically assuming it's pain and knocking her out. If you know Elena, she's not a crier and has a ridiculously high pain tolerance so this all has been a real struggle.

The silver lining?  This surgery has a really high success rate compared to what her other Ortho doc wanted to do (not to mention it's less invasive) so there's a good chance this is the last hip surgery she will need.  That's good, because I NEVER want to go through this again.

For all you worriers out there, I promise we're ok.  It's tough right now, but no need to panic.  Chad and I are a good team and trust me, we've been through far more stressful situations than this.  You know, it's the hardest thing in the world to see your child in pain and we're in the thick of it.  We're surrounded by your prayers and are showering Laney with love and kisses.

Thanks for sticking with us!
xo Emm

Tuesday, November 18, 2014

Quick Surgery Update

I wanted to send out a quick update for all of you sweet people who have been praying for us today.  I'm doing this from my phone so excuse any grammar mistakes!

Surgery went well.  We will learn more from the doctor tomorrow when he rounds.  It took a little longer than expected, as it took an hour for them to get her IV in.  This is not surprising to us...she's always had issues with this.

She was doing well in post-op until they brought her up to the Peds floor and moved her.  She was pretty hysterical for about an hour and a half.  She's better now but still waking and crying.  Really, Chad and I just want her to sleep.  It's pretty heartbreaking not to be able to do anything or even hold her.  It's hard to say if she is in pain or just scared and confused by everything.  Regardless, it's been a difficult few hours for us.

Continued prayers are appreciated.

-pain control
-healing
-mom and dad emotions and exhaustion
-her tummy (constipation is a big issue post surgery that can cause real issues)

Again, thank you all for sticking with us today and sending up prayers on Elena's behalf.  It is such a comfort to us to know that we aren't in this alone.

We will keep you posted.

Xo

Sunday, November 16, 2014

Prayers Requested!

Elena will be going in for surgery this next week.  See here for a synopsis.

We need all you prayer warriors to lift us up in the next couple weeks.  Here are some specifics:

-Safety for all of us traveling
-Prayers that her hip wouldn't be as bad as it appeared on x-rays
-Dr. Nuzzo, other doctors and Nurses who will be caring for her
-Peace and calm for Mom & Dad
-Elena's Recovery/pain levels
-Calvin, as we will be away from him

Most importantly, pray for a successful surgery without complications.  We will keep everyone posted this week.  Thank you, thank you for keeping our family lifted in prayer as our Elena has to endure this difficult surgery.

xo
Emm

Friday, November 14, 2014

Ronald McDonald House

Last Friday was the annual Ronald McDonald House gala.  If you remember, we have attended the last three years with a group of our friends.  It's always such a fun event and gives us an opportunity to celebrate an organization that is so near and dear to our hearts.

This year we had THREE tables...that's right!  30 of our friends and family attended with us.  And this year we had a surprise for them.  Earlier this fall, our friends at the RMH asked us to be their feature family.  What an honor!  We were so happy to have a chance to share our RMH story and raise awareness (and hopefully donations!) for them.  To this day, we still don't feel like we have been able to give enough back to them, for what they gave to us while Elena was in the hospital for 20 days.

For those that aren't familiar with the RMH, it is a haven for families who are thrown into situations with sick children.  We spent that first night at Riley in the RMH.  I remember thinking, "how did I get here?"  No one ever thinks they will need the services provided by the RMH, until you do.  Most of the families have no other choice.  They can't afford a hotel or three meals a day outside of home.  The sanctity it provides is unmatched, both physically and mentally.  We were so proud to be able to share their message and will continue to do so.

You can see our video below, but it will also be up on their website soon.  Feel free to make a donation or sign up to volunteer your time while there! Here's their website:  http://www.rmh-indiana.org/

Click HERE to watch our video!

The whole crew

 All my Pi Phi loves (well, the Indy ones anyway)

 My brudders


Monday, November 3, 2014

Three Years

In one second, one phone call, one blip in time, our lives were shattered.  I screamed.  I couldn't even muster a prayer from my lips.  I just began screaming Jesus' name.  I still can hear myself.  I can still feel the panic in my gut.  I arrived at the Riley Hospital ER that day all alone to find out whether my baby was alive or dead.

It's been three years and that day is as fresh in my mind as if it happened yesterday.  The flashbacks can be crippling.  The pain is still so immense.  I'm not sure if it will ever ease.  Regardless, life moves on but I'm powerless against the memories of the day that our lives changed forever.  They are always waiting just below the surface, ready to consume me at a moments notice.  My days are dotted with reminders of our crushed dreams....the other morning at breakfast, our eyes brimmed with tears watching a dad with his three year old daughter out for a breakfast date together.....the other day when I overheard a little girl tell her mom that she loved her....when we go for a walk and stop to watch the little cheerleaders cheering for the local youth football team....the other night when a million little Elsa's came to our door shouting "Trick or Treat!" and watching their eyes light up at the sight of candy.  All of those are reminders of a life our little girl will never get to experience.  In each of those moments, my heart breaks just a little more.

Chad and I often talk about how little we were able to comprehend during those days at Riley.  I guess it would be safe to say we were in shock, unable to even imagine the life that we now live.  We literally had no idea that Elena would be forever changed.  We assumed once the medication wore off, she would spring back to life and all would be well.  And reality sure smacked us upside the head that first year.  When I think back to her first year of life, all I can remember is an inescapable, lingering darkness.  We were always teetering on the edge of being consumed by it.  Looking back, I would call it the depths of despair.  I can't explain to you how unbelievably sad it is to say that my baby's first year of life, we were all fighting for survival.  I remember nearly nothing but sadness.

The second year brought reality and fear.  It was (and still is) scary to face the future.  We began to understand what our lives would look like....therapy, doctors, wheelchairs, equipment, likely permanent feeding tubes, surgeries.  We finally understood that there would be no "snapping out of it".  But, I also remember there being hope.  I remember beginning to understand (again) that God's plans are not our plans.  And even though we had planned for complete healing for Elena, that perhaps God's plan would be more fulfilling.  I began to realize that we will never know why, but it isn't always the why that matters.

Right now I feel as though I'm in a place of perpetual healing.  I have far, far more good days than bad days.  Most days are treated as normal life and are genuinely happy.  But the hard stuff is always lurking there too.  It can hit out of nowhere.  The healing is ongoing.  The grieving never ends.  It gets more bearable, but it never ends.  I'm really good at spontaneously bursting into tears (part of this is genetic...I come from a long line of criers) but tears are healing.  I'm realizing that it will take longer than three years to recover from the trauma we've endured and that's ok.

Any time you face a major life altering moment you have a choice.  You can crumble into a pile of nothingness and be sad forever or you can do your best to pull it together and fuel your purpose in life with the perspective gained and realize despite EVERYTHING you have endured, you inevitably have WAY more to be thankful for.  It felt as though we crumbled for a bit but we clung to each other and to our faith to pull us to our feet.  We have felt our way through the darkness, often desperately clinging to single strand of hope for the past three years.  You must keep your eyes forward and not dwell on the what happened but focus on how you recover from it.  It's beginning to feel like we are emerging, no doubt stronger.  God has given us grateful hearts.  We have been overwhelmed by the love and support of all our family and friends.  We have been humbled by the impact our sweet little girl has had on the hearts of many.

Three years ago Elena's precious little heart stopped beating.  By the grace of God, He breathed life back into her and in a way, she was reborn.  For a little girl who has never uttered a word, the lives she has touched is pretty amazing.  For three years our motto has been Ephesians 3:20, "Now to him who is able to do immeasurably more than all we ask or even imagine, according to his power that is at work within us."  We knew God was capable of physically healing Elena and we clung to this verse.  But perhaps God saw more opportunity.  Maybe the physical healing isn't the most important part, but it's the spiritual healing.  I know God IS doing immeasurably more than we originally asked for, or that our prayers ever could have imagined.

It's too difficult to try and think about what our lives would look like today if November 3, 2011 had been different.  I would do anything to change what happened that day.  Unless you've experienced it, you can never imagine what it's like to watch your child struggle like Elena does.  As hard as life has become for Chad and me, it will never come close to what Elena has to deal with.  This anniversary will always be incredibly difficult.  I'm sure that will never change.  It was the worst day of our lives and set us on a course we could have never imagined.  But Elena lived that day and we will be forever grateful for that.  We have experienced the lowest of lows and the highest of highs in just three years, but we continue to move forward with thankful hearts.  We're thankful for life, every precious second, and the perspective we now have.  Most importantly, we're blessed every day by our sweet Elena, her story and all we learn from her.  She is love, perfect, innocent, pure love.












Monday, October 27, 2014

Six Months!

My goodness is time flying!  Cal turned six months old yesterday!  What a little sweet pea this kid is.

Calvin is busier than ever.  He's rolling all over, jumping in his jumperoo like a maniac and has discovered just how loud he can squeal!  He is so easily distracted by anything right now.  It's like everything in the world is new and he MUST explore it right away.  It's completely mesmerizing to watch.  Watching him explore with his eyes and his hands is so foreign to us.  It never gets old.  You can practically see his brain operating on overdrive.

So far, he's been a great eater, which is so thrilling to us!  He always frowns after the first bite, then  grabs the spoon out of your hand to shove it in his mouth.  We haven't found anything yet that he won't eat.  He loves it all...apples, sweet potatoes, green beans, peas, pears, carrots..you name it!  All that eating he's doing is showing too.  His cheeks, his thighs, his belly...so much chunk to kiss on!    As much as we anticipated him being a mini-Chad, it appears our Cal is turning into a Frey.  He's looking more like my baby pictures every day.  His hair is darkening.  His eyes are looking more like mine in color.  The cheeks are alllll me.  Chad has high hopes for a basketball career with his six month stats.  He was well over the 90% in height and weight, not that it means much but Chad just hopes Cal gets the Frey height so Chad can fulfill his hoop dreams through Cal :)

The last couple days he has started this fake, uncomfortable laugh that is pretty funny.  I'm not sure what it means yet, but more than likely it's his prelude into "PICK ME UP MOM!!!".  It was so funny at his doctor appointment today watching him act like an animal.  He was grabbing at everything..the stethoscope, the paper on the exam table, the doctor's face, the ear-looker-thing...all of it, he wanted ASAP.  He was a complete wild man.  Elena and I were giggling at him the whole time.

Both of these kids are all smiles.  I feel so fortunate that both of our kids are happy and easy going.  Now don't get me wrong, they both can test Mom's patience, but for the most part it's all squeals and giggles around our house.  Calvin is really finding his voice.  There's lots of ahhhhhhs, dadadadadas and eeeeeeeeeeks!  He instantly grins when you look at him, showing off his two new bottom teeth.  He still loves that thumb and his feet.  His favorite right now is jumping.  He does it all.the.time.  He's pretty close to figuring out how to crawl.  He gets up on his hands and knees and rocks.  I'd say in the next month or so he should have forward movement figured out.  He can back himself up pretty easily but it's tough coordinating everything to move forward!

He is bringing our house a new joy every day.  All of us love the spirit he brings, even Elena.  She loves listening to him babble and often babbles (or laughs) right back.  Even Pete doesn't mind when Cal grabs his face or pulls on his floppy ears.  Chad and I continue to delight in every new discovery, and every new change in our sweet little guy.  Gosh, we love him so!

What a happy, happy six months it's been.






Wednesday, October 22, 2014

It's Been a Bad Day

It's been a long emotional day and I'm totally exhausted.  I haven't had one of these days in a long, long time.  I feel like I need to get my thoughts out before I collapse into bed, so buckle up!  If you're looking for an upbeat post, stop reading.

Elena's hip.  That blasted hip.  My poor little baby.

As I mentioned before, Elena will be having hip surgery later this year to correct her hip dislocation.  We are traveling to New Jersey to have the procedure done by the only doctor in the country who does this particular surgery.  It's an alternative to a practically medieval surgery suggested by her local orthopedic doc that literally saws her entire femur in half and replaces it back in the socket.  Not an option for us.  The route we have chosen is much less invasive and has an amazing track record of no repeat surgeries.

The downside of this is that we are putting our trust in a doctor who has never seen nor touched Elena.  This entire process is based on trust.  We trust the other families at the Jackson Center who have put their children through this exact procedure.  We trust our gut that this is the right decision for Elena.  We trust this doctor who is cutting edge and incredibly knowledgeable about orthopedic issues in CP kids.  We trust God that He will provide peace and healing through the next few months.  We trust.

Last week, Elena's doc had us get new x-rays since her last ones were from May.  I could tell myself just by seeing the image that her hip had gotten worse.  I didn't know how much worse until the doctor emailed me this morning, practically panicked that Elena's hip was nearing the point of no return.  Cue the hysterical Mom.  To make a long story (and day) short, we are likely moving her surgery up and will have to brace her in a horrible metal brace 24/7.  This is all in the hopes that we can avoid an additional procedure in the case that her hip is too far dislocated.

I could never try to explain to you the guilt that I feel, the weight of the decisions we have had to make for our daughter in just the short three years of her life.  Every day Chad and I strive to make the best choices for her, relying on her doctors, therapists and our family at the Jackson Center.  Some are small, like should we start Elena in a new PT program.  Some are huge, like should we pursue a hardcore medication like Baclofen to help Elena's tone (one we struggled with for 2.5 years).  We make a decision and pray for the best.  When our expectations fall short, it can be soul shaking.  That was today.

I know there's nothing I could have done differently and that her hip digression isn't in any way my fault, but that doesn't change the fact that I'm choosing to put my sweet little baby through a painful surgery and recovery that she won't understand.  Even though it is the right thing, it doesn't make the gut wrenching decision any easier.

Days like this make everything else trivial.  That thing I was complaining about last night.  Those new fall boots I've had my eyes on.  That family vacation we had planned.  That project that needs finishing at the house.  I would give it all, every last bit of everything I had, to have my baby be whole again.  Days like this, I regain my perspective.

I'm so incredibly grateful for Chad today, with his quiet understanding and support.  He's the only other person in the world who understands this burden that I bear.  He knows why this is so frightening, so emotional.  The support I received this afternoon at the Jackson Center was a Godsend.  These moms understand the difficulty in having to make these decisions for your children.  And for Lara, who has been in my shoes with Jackson and is leading the charge for Elena.  She took the time to calm me down, explain things, and assure me.  Just what I needed.

As always, I'm confident we will conquer this battle.  It's just the getting there that is the hard part.  And as usual, we'll need to be surrounded by your prayers to get there.  We never get through these tough times without your prayers and support.  Today, it took a small army to get me through so I'm sure it'll take more than that to get us through the next couple months.

For now just pray that her hip doesn't deteriorate any further and that she would be tolerant of the sure-to-be miserable bracing she will have to endure.  And for strength and peace.  I'm sure in days ahead there will be a struggle to find either.  We'll keep you posted.

Elena rocking her hilarious new neck brace (to help with her head control).  I mean this girl even looks adorable with this ridiculous thing on!


Tuesday, October 14, 2014

Happy Birthday Mamaw!

This past weekend we celebrated my Grandma's 90th birthday.  She's my only surviving grandparent left and she's still feisty as ever at 90.  We are so fortunate to continue to celebrate her and the amazing 90 years she has lived.  I never tire of hearing her stories of life through the Great Depression, World War II and everything in the world that has changed since.

My Mamaw has always been so special to me, not only because she was always entertaining us and acting silly to get us to laugh, but because she laid the foundation of faith in our family.  She has wrapped her entire family in prayer her whole life.  I've never felt it more than the last three years with everything we've endured with Elena.  She is our prayer warrior.  I'm so grateful for her.

I only hope that I can have her strength, faith and fire (and ridiculous wit!) when I'm 90.  I love you, Granny!  You're the heart of our family!



Tuesday, September 30, 2014

Five Months

Last Friday, Cal turned FIVE months.  This little guy is growing insanely fast.  Every day is new and special.  I'm trying my best to savor each moment because time just moves faster and faster.

This past month our little guy has changed SO MUCH!  He's really packing on the lbs lately.  He's totally filling out six months clothes.  We'll be in nine months here pretty quickly.  He's definitely rolling all over the place, desperately trying to get his knees up under him to get in four point.  A little bit to go before he masters this, but I'd be lying if I said I wasn't feeling a little unprepared to have a mobile child!  We've slowly been introducing foods and so far, he hates the first 1-3 bites, then can't eat the rest of it fast enough.  He's a wild man!  It's quite refreshing to have a kid who loves to eat!  I love watching him explore visually and with his hands.  He studies everything very intently and you can practically see his wheels spinning.  He's enjoying his exersaucer and Johnny Jump-Up.  In just the past week, he's learned how to "jump", basically just bouncing up and down but he seems pretty impressed by it.  Our Cal is all smiles and really hams it up for Mom.  He'll stare at you until you look at him, then give you a flirty toothless grin.  I find it totally irresistible!  What a sweet pea this one is!  

I realized this month just how much we missed in Elena's first year.  It's all so blurry.  I think that we were trying so hard to survive and come to terms with what happened that it's safe to say her first year was anything but enjoyable, for her and for us.  It was painful, confusing and almost unbearable at times.  Cal's first five months have been so refreshing to us.  He continues to show us what miracles these tiny little people are.  We relish in every smile, every roll, every bite (of food!) and all the exploring his tiny little hands are doing.  I'm so grateful for this perspective and appreciation of his development.  It makes life seem so much sweeter.

Just because Cal still amazes us simply with his ability to take a bottle, doesn't mean Elena is getting any less love or attention!  This sweet girl continues to make us all laugh every day.  She is doing so well right now, making us proud every day at school and at the Jackson Center.  I've been finding myself tearing up watching her, because I'm just so darn proud of her perseverance and ability to adapt herself into new situations.  Cal may impress us with his new skills but Elena steals our hearts with how hard she continues to work.

These two together though....

Chad said something the other day, that before Cal was here, we were so excited at the thought that Cal would be so good for Elena, pushing her to keep up with him.  But, I think we're more looking forward to how Elena will impact Cal, how she will shape the person he becomes.  THAT is what warms our hearts.  And THAT is what being a parent is all about.  It's about helping these little people become loving, compassionate, world-changing adults.  I pray for these little loves every day, that Elena would continue to be the spark and Cal would carry the torch to light up this world.  What a happy, happy five months it has been!

video




Monday, September 22, 2014

Picasso Part Two

You may remember Elena's priceless piece of art we were given at last years Jackson Center gala.  This past weekend, we helped the Jackson Center celebrate 10 years!  Of course, we were once again given Elena's latest artistic masterpiece.


The crew minus my Dad

Our sweet friends Rick & Jenny, who joined us again this year (with Elena photobombing from above!)

It was so wonderful to celebrate such a special organization.  We don't know what we would do without the love, support and care the JC provides our family.  It was great to have my parents, brother, cousins, aunt and uncle there to help support us.  We loved being able to share this special place with them!

A special thanks to Grandpa & Mimi for watching the kiddos this weekend! :)

Monday, September 15, 2014

Hello?!

Are you all still there?  I am!

It feels like forever since I've been able to blog and I'm sorry!  Honestly, I've been short on time lately (as if I'm ever NOT short on time) and the blog has taken a back seat to everything else.  Rest assured, we are doing really well.  Elena, Cal and I are settling into a great weekly groove.  We are on the go practically every day, but we're all handling things pretty well at the moment.  Now, I know that since I've said that, it's all subject to change at a moments notice :)

Elena continues to thrive at school.  Every day she starts laughing as soon as she gets off the bus, anxious to "tell" me all about her day at school.  It's the same with the Jackson Center.  The whole time she's there, I can hear her "talking" to her friends.

We've started her on a new medication this past week.  It is an oral medication that helps with her muscle tone.  We're trying it out in place of the Botox.  So far, she's had great results.  Though, it has a much more global effect that can make it difficult for her to hold up her head and trunk.  It's really quite difficult to explain how her muscle tone operates, but basically even though she seems really strong (I can't tell you how often people tell me how strong she is), her muscle strength is incredibly weak.  This medication is something similar to a muscle relaxer so when her muscles aren't in that neurologically "stiff" mode, they're like jelly.  The result is a floppy Elena (great for her hip!).  We have to play around with the dosage quite a bit to get the desired effects, but we're hopeful this can be a nice change to to the painful Botox injections every 3-4 months.

Speaking of her hip, cue the "wah wah wah".  We're facing another hip surgery, but we are so, so hopeful that this surgery may curb her problem awhile.  Nothing has been scheduled yet, but we will go ahead and ask you to start praying.  To remind you, Elena had surgery last October to help with her left hip dislocation, which is a result of her muscle tone (see above) and some weird brain stuff that doctors have yet to figure out.  Something like more than 50% of kids with cerebral palsy have hip dislocation...we're in that lucky 50%.  Anyway, I'll share more details with you when we actually have them, but go ahead and add Elena and that naggin' ole' left hip to your prayer list!

Cal is doing great....growing like a weed.  He's rolling all over the place.  We put him square in the middle of his blanket and the next thing we know, he's half way across the room, on his belly facing the opposite direction.  Movement is quite foreign to us around the Hinton house!  It's amazing to see him in action..I can only imagine what's to come!  He's as happy as can be, though he still loves to rock his famous "scowl".  It's a relief that we are now getting more toothless grins and giggles these days than his stare down!  We got his three month pictures done back in early August, and I'm just now getting around to showing you all, but they're pretty darn cute.  They capture his personality pretty well at that age.

Well, that's all of an update that I can muster right now!  I'm trying to wrangle both kids down for a nap, fingers crossed.  Thanks for hanging with us, continuing to follow and pray for our family.  It really means so much to us.  We still have our days and our struggles.  Knowing that we're still on prayer lists and that our Elena is still inspiring others, fill us up when we need filling.  We love you all!

Cal the "Scowl"




He smiles!!


 My favorite look ever!