Roll Over!

Look at Elena's new trick!

**Excuse the annoying Mom cheer :)

She isn't quite consistent on it yet, but she's definitely getting the hang of it.  

Roll Laney Roll!

Giving Thanks

Thanksgiving Day last year was our first full day at home after spending 20 days at Riley.   We had no idea what we would encounter in the coming weeks, months.  But, we were thankful.  Like from the depths of our hearts, thankful.  We were thankful to be in our home, away from the beeps and alarms of all the monitors stuck to Elena.  We were thankful our daughter was alive.  I don’t think I've experienced a time of more thankfulness. 

While I don’t wish our circumstances upon anyone, I do wish that on this Thanksgiving, people would stop and think about what it actually means to be thankful.  Truly thankful.  I’m not talking about being thankful for “stuff”, for our present life situation, all of that is temporary.  I mean experiencing thankfulness at the most basic level.

This year I’m thankful for life.  I’m thankful for the chance to wake up each morning to a new day, a new opportunity.  I know how very fragile life is and how it can all in change in a single instant.  It is easy to complain about being tired, having too much to do, other people, our jobs and the countless frustrations we experience every day.  But in the midst of all those complaints, if we could just stop and realize that NONE of that matters.  What does matter is taking advantage of every moment God gives us to live and love. 

I often hear complaints from other Mom’s about my kid won’t stop doing this or drives me nuts when they do that.  My heart clenches at the thought of their complaints being something I am desperate for my Elena to do.  It’s no fault of their own, but it does make me stop to think how silly my own complaints are sometimes.  And that there is most definitely someone, somewhere who would gladly assume the situation I’m complaining about.  It is a reminder that even though we've been dealt a difficult situation, we really have SO much more to be thankful for than to complain about. 

So today, on the ONE day a year designated to being grateful, let’s remember the basics, not the stuff, not the difficulties we each face.  Let’s give thanks for life in all its fragility.  For each breath.  For each moment we have to spend with the ones we love.  For the things that really matter.

Happy Thanksgiving!

What's New!

Our little Laney is changing so much.  It has been wonderful having her off her medications.  We've noticed such a difference in her.  She was on them for so long, it became our normal.  Without them, it's obvious to see the effect they had on her.

We've officially entered the world of having a toddler...with full blow temper tantrums.  They seem to center around nap time and bed time.  The minute we reach the top of the stairs, she clings to us and starts to whimper.  By the time we lay her down, she's lost it.  This is such a deviation from how she's always been.  We would easily lay her down and she'd put herself to sleep.  We haven't quite figured out exactly how to handle these new meltdowns!  As annoying as they've been, we secretly burst with joy, knowing that these kind of reactions are a great sign cognitively.  It's our little gal's way of communicating to us that she really prefers hanging with her Mommy and Daddy to lounging in her crib.   Hopefully, we can come up with some compromise so it doesn't take her 45 minutes to get to sleep!

Besides the exercise her lungs have been receiving, she's been working hard at her head/trunk control.  Her therapists keep pushing her and she keeps responding.  We've been working on sitting, tummy time and rolling.  We're so anxious for her to master these skills, as the rest of her development depend on these critical pieces.  She's been spending some time in her "stander".  It's a Frankenstein looking contraption that we strap her in to, then raise her up and she stands fully supported.  She looks pretty funny in it!

We're finally moving forward with her feeding too!  She's now eating 2 T. or 1oz. of baby food, twice daily! Yay!  We just introduced a "Honey Bear Cup" for "drinks".  We call it her "Honey BooBoo"! :)  She's surprisingly done pretty well with it.  It's felt really good to be able to make a jump in her feeding.  We've been taking everything really slow for her safety.  To see her respond well to these increases, makes us really excited!

Our little gal keeps fighting!  We're so proud of her.  This month has been hard, every day thinking back to what our life was like a year ago that day at Riley.  She has come so far.  We all have.

For our prayer warriors, here is a list of some specific prayer requests"
-Continued strength in her neck, trunk, arms and legs
-Head Growth
-Continued gains in her vision, especially her left field (which is much worse than her right)
-Patience for Mom and Dad in figuring out Elena's emerging personality :)

 Laney in her Stander

 Laney and Pete

 Happy Girl

Modeling her new hat :)

The Sussy Project

I was recently introduced to The Sussy Project.  The what?!  :)

It happens to be an awesome organization here in Indy that drops a random act of kindness on someone who needs it.  Such a GREAT idea!  I was nominated last week by my sweet sister-in-law Amber.

They blogged about us this past week:

Sometimes beauty and tragedy are oddly intertwined. And the latter tends to strike when you least expect it. Picture this if you will: You give birth to a beautiful baby girl. She is perfect in every possible way. You have just returned back to work after your 3-month maternity leave. And suddenly, you receive a phone call. Next thing you know, you and your husband are rushing to Riley Hospital where your daughter has been hospitalized in the intensive care unit. Drowning in unanswered questions. Fearful and horrified at the events taking place before your eyes. And praying furiously for your little girl to make it through alive.

Unfortunately, this nightmare was reality for Emmalee and her husband, Chad. On 11/3/11, their lives were forever changed after an accident left their 3-month old daughter Elena Catherine clinging to life. Elena spent the next 3 weeks in the hospital while the Hintons dealt with things new parents should never have to deal with – ventilators, brain drains and feeding tubes. She was diagnosed with cortical laminar necrosis and as a result would likely have some underlying neurological deficits requiring intensive therapy. Like the warrior she is, little Elena pulled through and was released home with her parents. Since release she has been doing well, making lots of progress despite her diagnosis. That is not to say, however, that Emmalee and Chad don’t deal with plenty of day-to-day struggles. They now have a new reality focused on recovery, involving multiple medical personnel (therapists, specialists, etc.) who are dedicated to helping Elena live as normal of a life as possible.

Last week, The Sussy Project learned about Elena and Emmalee after receiving an email nomination from Emmalee’s sister-in-law, Amber. It read as follows:

Hello,
My name is Amber Frey and I would like to nominate my sister-in-law Emmalee Hinton for the Sussy Project! About 1 year ago to the day we almost lost our first baby of the family. Elena Catherine was just 4 months old when she was taken by ambulance to Riley Hospital one afternoon. She was in the care of her nanny that had been watching her for about a month. Emmalee had just returned to her job that she loved at KWK Management Group.  Long story short, Elena had an accident that day and we still don’t know the whole story.  We spent that day and every day after that at Riley Hospital for the next 6 weeks. Elena had many major surgery’s and was in ICU for 2-3 weeks. Elena is a such strong girl and survived. There have been many challenges along the way and Emmalee has given 100% of herself every day to Elena’s recovery. Emmalee and her husband Chad are an inspiration to me everyday. You can read more about their story here: http://www.ourshininglight.blogspot.com and here: http://www.caringbridge.org/visit/chademmaleeandelenahinton/journal

Thank you!

I spent the next hour absolutely engrossed in the above-mentioned blogs. As a nurse practitioner, I was genuinely interested in Elena’s medical progress. And as a woman, my heart ached for her struggles. I could never imagine the horror she lived through. But my overall emotion was that of amazement. When your world is rocked like hers, you often want nothing more than to curl up in a ball, shut your eyes, and pray for the nightmare to end. But through prayer and positive thinking, along with the unending support of others, Emmalee had the strength to make it through each day, with her miracle daughter right along side of her.

Amber and I decided to sussy Emmalee today as this weekend was the anniversary of Elena’s accident. We came up with the idea of having a dozen cupcakes delivered to her home, just to shake up the monotony of her Monday morning. And hopefully induce a much needed smile! Typically we reach out to the nominees prior to sussy delivery to let them know something is on the way. But for one reason or another, she missed our initial email. So to say that she was genuinely surprised with a care package from Holy Cow Cupcakes this morning is an understatement. We received this email from her in response:

This morning I received a knock at my door and received a kind (and totally surprise!) delivery of cupcakes.  I immediately burst into tears at the thought of someone nominating me to receive this gift.  I had missed the email on Friday announcing my upcoming delivery and that my amazing sister-in-law had shared our story.  My Husband and I struggled through this past weekend, as it was the year anniversary of my 16 month old daughter suffering a life-changing brain injury.  Throughout this past year, we have been overwhelmed by people’s kindness and love for our family.  The Sussy Project serves as yet another example of the goodness in people’s hearts and their desire to bring a smile to someone’s face.  Even though we are in the midst of a very difficult journey, it’s little things like this that are a great reminder of what is important.  We will certainly enjoy our treats this week and look forward to sharing them with Elena’s therapists who also work tirelessly for her recovery.  Thank you Sussy Project for bringing warmth into our home today…you can guarantee we will be paying it forward!

Gosh, talk about making a heart smile. What an absolute honor to be able to recognize such a deserving woman with so much strength. It’s no wonder her daughter has made so much progress in such a short amount of time. God bless this little girl and her amazing family. She has so much more life to live. Clearly there is someone out there listening to Mama’s prayers.

You can tell by my response how touched I was to be the recipient of something so thoughtful.  It made me stop and think that the Sussy Project sets the example of how we should treat people in our every day life.  We should all be so compassionate and kind to realize that every one is fighting a battle in their lives.  When you offer a hug, a smile, a cupcake, the smallest gesture, it may mean the world to that person.  Let us all be so thoughtful this week.

"Be kind; Everyone you meet is fighting a hard battle." - Ian MacClaren

If you'd like to donate or nominate someone for the Sussy Project (which you should DEFINITELY do!), go to their website, HERE.

RMH

If you have followed our story from the early days at Riley, you'll know how dear the RMH is to us.  It provided Chad and me with a place to stay that first traumatic night at Riley, and a couple other nights throughout our 3 week stay there.  They gave us hot showers, warm meals and a place for our friends and family to gather.  Frankly, without it, our Riley experience would have been much different.

For Elena's first birthday, some of our dearest friends gave us the most thoughtful present.  They bought us all a table at the Ronald McDonald House of Indiana's Annual Gala, which happened to fall the night before the anniversary of Elena's injury.  Last Friday, we celebrated the RMH and ALL the amazing services it provides to Riley families.  We were able to support an awesome cause and spend time with some of our best friends.  Needless to say, we had a blast!  

Here are some pictures from our fabulous night out!

 Ash, Lindsay, me, Amy and Alisha

 Evan, Chad, Aaron, Andy and Shane

Thank you to the Ertel's, Ledford's, DeMoss' and Frey's for your support of us and the RMH!  It was such a great night!

A Year Later

Gosh, where do I begin?  I can’t tell you how many times I've thought about where we would be a year later.  I look back at this past year and it’s a blur.  There are many days when I can’t remember how we even survived those nightmarish days at Riley, those excruciating days in December or the bleak days scattered throughout this past year.  But we did.  It has not been an easy year, but it has been one filled with both heartache and blessings.

There were many miracles that awful day.  It was a miracle that, after Elena’s little heart stopped beating, it started back up again with the aid of the first-responders.  It was a miracle that after I got that call, I was able to drive myself to the hospital, screaming, crying and praying the whole way.  It was miraculous that Chad’s Uncle Phil was available to pray with him over the phone, while Chad drove 90+mph from Lafayette to Riley.  Every one of those doctors, nurses, chaplains and social workers at Riley were miracle-workers.  They kept my baby alive and me from shattering into a million pieces.  Elena was teetering between life and death that day, one different medical decision or circumstance and everything could have changed.  It was a miracle she lived. 

The memories of that day are as fresh as if it happened yesterday.  The pain is still intense, the fear real.  My heart still clenches up, tears gather in my eyes when I flash back. There has not been one day go by this entire year, that I have not been haunted by a memory of that day.  Every minute is seared into my brain.  I’m certain that as long as I live, I will never be able to forget the memories of November 3^rd, 2011.

But more than anything, I don’t want our story to be just a reflection about that day.  I don’t want the trauma, the unfairness, the hurt from that one day to override the many blessings we've received and beautiful events we've seen unfold since.  I can’t even begin to share with you all the “coincidences” we've experienced or all the people who have contacted us just to say how touched they've been by our story.  It’s completely divine to see how many people our sweet little girl has touched, even if for one day, one moment.  We will never know how many of you have been moved by Elena’s story, but we have been so touched by those of you who have shared with us. 

It is incredible to know that Elena has made such an impact, but you all have been so critical to us.  This all would be impossible without the love and support we have received since that first day at Riley.  You all have literally kept us going at times.  It’s very easy to feel isolated and alone in our situation, but you have given us comfort, love and encouragement at the moment we need it most.   Your stories, messages, cards, texts, hugs, shoulders to cry on have been an essential part of our journey.  We believe that God has used each of you to be there for us.  So thank YOU!

And lastly, our Elena.  She is a living, breathing miracle.  She has showed more strength, courage and fight than I could ever hope to in my lifetime.  She inspires me every day.  Elena is such a happy girl, full of smiles and love.  It gives me the greatest joy to watch her every day, getting stronger.  I couldn't be a more proud Momma.  This girl is loved.  Seriously loved.  By us, by our family, by our friends, by people she’s never met but more than any of us put together, by God.  That’s a lot of love for one very special girl. I know she will move mountains in her lifetime.  God has such huge things in store for her.  I just know it.  Deep down in my heart I know she’s going to be alright, that God has much grander things in mind for her than I could have ever dreamed up.  It may not be the plans that we made, but I’m pretty sure God’s plan will prove much better.

When I actually stop to think about everything, the future is far too uncertain.  So much so that it is often overwhelming.  The past can be too traumatic, too emotional.  Every day I have to make a conscious decision to live in the present.  I want to cherish every day, every moment with my sweet girl.  I choose to celebrate each victory no matter how small.  I choose to love that precious girl to pieces, just the way she is.  I remember to give thanks to God for ALL that I am blessed with.  I try to take little for granted.  God is in control. 

Here’s to keeping onward and looking upward, living presently and celebrating each inch of progress we all make!  

That was then:

This is now!

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11

Bumble Bee

She was the cutest bumble bee I've ever seen.......