Travels

We have had quite the December, traveling so far!

Earlier this month, we boarded the "Polar Express" with some of our dearest friends for a trip to the North Pole.  The train ride was complete with cookies, hot chocolate and of course, the big guy...Santa!  Laney enjoyed the ride and we had fun watching the other kids get so excited to see Santa and sing Christmas Carols.

Since our trip to the North Pole was soooo cold, we decided the next weekend we would head south to Florida!  We had a great visit with Nana and Chad's Grandparents.  Laney showed off some of her new tricks and we enjoyed Nana and Great-Grandma's cooking.

We're looking forward to all our Christmas festivities next week!  I have a feeling Elena is going to find plenty of goodies under the tree this year :)  Merry Christmas to all!

 All Aboard!

 Laney with her best girls

 Far from the North Pole!

Fooood!

Laney has been on a roll (quite literally) lately!  We've had a great couple weeks of improvement and we hope to keep up the good trend.

The last week or so Chad and I have been so excited because it seemed as though Elena had rounded a corner on her eating.  It was confirmed during her last speech therapy appointment when she gobbled down 2.5oz of food!  This is the most she's EVER eaten!  

It's like all of sudden she figured it out.  She's even opening her mouth for the spoon.  It's not quite the most coordinated but she's doing it.  

You have no idea how exciting this is for us.  Her eating has been some of the most tedious, frustrating, painstaking parts of her therapy.  There have been many days where we both end her feeding in tears.  A year ago she was literally being fed 6-8 drops via an eyedropper.  But all that perseverance and hard work is paying off.  To see her opening her mouth for the spoon and actually seeming to enjoy eating makes my heart burst!  

She still has a VERY long way to go before we can even whisper the word "weaning" (from the G-tube) but a Mommy can dream, right?!  It's certainly a step in the right direction.  Keep up the prayers, because this most definitely is an answer to them!

She eats!

Covered in pears after her therapy session!

This Little Light of Mine

Since the moment I received that call on the day of Elena's injury, she has been covered entirely in prayer each and every day.  That is so incredible.  Lately, I have been reflecting on what a comfort all of you have been.  I start to tear up every time I try to comprehend just how much my little girl is loved and prayed for.  It's overwhelming to Chad and me to think about all the prayers that have been said over the last 13 months.  Elena is living proof that there IS power in prayer.

This past week we were at a gathering with all my extended family and several friends from the community my Mom grew up in.  The minute Elena and I walked in my cousin's young son ran up to us saying, "It's Baby Elena!  She's so cute!  I pray for her every night!".  It was all I could do to keep it together to say thank you.

We walked in a little further and I ran into my Great Aunt who stopped to see Elena and tell me that she prays for her every day.  Later, my Mom ran into her minister (who she didn't know) who asked her if she was Elena's Grandma.  He told my Mom that my Great Aunt prints out my blog entries, takes them to church and the church posts them in their bulletin to update everyone who is praying for our girl.  Wow.

We were able to see my cousin whose family is soon moving to Chile to be missionaries.  Though this was the first time they were able to meet Elena, they have been such a support to us.  While in the hospital, we received messages from people whom we did not know, telling us they were praying for Elena.  My cousin and his wife had activated their network of prayer warriors across the globe.  His wife told me their youngest, who is five, still prays for Elena every night.  He prays that she would "be able to eat food...because it tastes so good" and "be able to walk because it is sooo much better than crawling".  From the mouths of babes!  They have been such an encouragement to us, even though they live thousands of miles away!

Another of my cousins has a young daughter who adores Elena.  When we were in the hospital she would come bringing homemade cards and presents.  Now every time we see her, she wants to hold Baby Elena.  She rubs Elena's hands, kisses her and sings to her.  The sincerity of her sweet gestures breaks my heart every time!

We were introduced to several other people who we did not know, but knew us.  They have been following our story, praying for Elena continuously.  What a blessing it is to know that people who don't even know us faithfully pray for our little girl!

It seems like Chad comes home every day telling me about something kind a client did for HIM!  Whether it's a text saying they prayed for our family that morning or how their daughter was so excited to see Elena roll over, every gesture gives us a dose of comfort.  Knowing that all of you STILL pray for our daughter means more to us than words could ever explain.  We are so touched to know that your children, who have much more exciting things to think about like Barbies, Trains and birthday parties, STILL remember Baby Elena and pray for her each night.

All of this serves as a reminder to both Chad and me that our situation is big, bigger than we could ever imagine.  God is doing incredible things in our lives and in those whom Elena has touched.  We are continually humbled at the love God has poured out in our lives through you all.  Your prayers and encouragement really do lift our spirits.  It helps us to realize what an opportunity we have to share our story and the work that God is doing in all of us.  Thank you to each and every one of you who support us every step of the way.  We know Elena continues to be a shining light, not only in our lives, but out there in this world.

"No one lights a lamp and puts it in a place where it will be hidden, or under a bowl.  Instead he puts it on its stand, so that those who come in may see the light."

Luke 11:33

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.