Sunday, July 22, 2012

A Friend's Words

"Consider it a sheer gift, friends, when tests and challenges come at you from all sides.  You know that under pressure, your faith-life is forced into the open and shows its true colors.  Let it do its work so you become mature and well-developed, not deficient in any way."  James 1:2-4

I stole this verse from a very dear friend.  The dear friend who has the most beautiful way of putting emotions into words, that shoot straight to your heart.  

In the midst of our personal tragedy, she has been there for me every step of the way.  Over the course of our six-year friendship, she has been such a mentor to me.  As a Christian.  As a Mother.  As a wife.  As a friend.  She and her husband are enduring a tragedy of their own.  About a month ago, she suffered a miscarriage at 20 weeks and lost their sweet baby boy, James.

I share this with you because, as a talented writer, she wrote the most beautiful blogpost about losing James and all the expectations she had of raising him, loving him and watching him grow.  Though our circumstances are different, we both share in the grief of lost expectations.  I wanted to share a paragraph she wrote that tugged at my heart.  I couldn't help but be reminded of my Ephesians 3:20 post back in April.....

"I've found there are dangers and risks associated with motherhood and I'm more than willing to take on those risks--and even to lose them--to know the depth of joy that it brings to me.  I know that my God doesn't make mistakes in numbering anybody's days, that He can take my anger and accusations, and that He'll still walk slowly with me down that road until my anger gives way to peace.  He knows what its like to lose a son."

As I expected, her faith is unshakable.  It inspires me to continue to fight the feelings of anger, grief and doubt that try to seep into my heart and crowd out the love, hope and faith.  She pushes me to stay steadfast in my faith and trust in God's bigger plan.  I always think about a metaphor she once told me...that we are all ants on a giant tapestry.  We're so small that all we can see are the dark colors, slowly changing as we move along.  But what we don't see is the beautiful piece of art that, when you look from above, all those colors that weave together to form a bigger, perfectly formed picture.   

That's how I often feel.  I know our suffering is not lost on God.  We must stay strong.  We must persevere.  We must trust in His plan.  He is using all of us to weave a beautiful life tapestry, that when looked at from above, all makes perfect sense.  

Thursday, July 19, 2012

Big Changes!

It has been such a great week at the Hinton house.  For once, it feels like a few of the lingering issues are beginning to be resolved.  

I have officially given Elena her last dose of the yucky Phenobarb!  God is GOOD!  We made it through a 12 week wean without any seizures.  I can't tell you how big that is.

We'll have to continue to be very cautious, as Elena will be at a very high risk for seizure likely for the rest of her life, but we are so pumped to be off one more med.  It feel so good to us, so I can't imagine how much better Elena feels without feeling the effects of that drug.

Botox is coming.  I swear.  After hours of hounding the insurance company, following up with the doctor, claims denied, claims appealed, more hounding the insurance and more following up with the doctor, we're approved (until next year....).  It's only been since mid-April that we've been waiting for this to happen.  We're hoping to get the injections in the next two weeks.

We're oh-so-close to moving forward with the Swallow Study.  Our therapist has wanted Elena to be fully prepared for this.  The last couple weeks, Elena has really started to show improvement with her ability to eat (still very, very small amounts).  Once we have the study, we can see how she's eating internally, if that makes sense, and will be able to increase the amounts and kinds of food/drink we can work with.  Please send up some major prayers for continued improvement so we can take on this major hurdle!

Elena began rockin' some killer boots this week too.  They're called "AFOs" and they're used to keep her feet flat.  Her toes are always curled under (as a result of the muscle tone) and she stands on the balls of her feet.  These boots will prevent shortening of the calf muscle, keep her feet flat and provide good support for when she begins to weight bear on her legs, and eventually...hopefully stand and walk.  Just to make Daddy proud, I ordered the boots not with Dora the Explorer, not with Barbie, not hot pink but.......



HOOSIER BOOTS!  Chad is already pumped to get Elena tailgating this fall in her boots :)

Lastly, Elena helped me celebrate my 28th birthday this week.  We celebrated with stretching, some vision exercises, a nutrition appointment, occupational therapy and a quick trip to the mall (thanks Chad!).  My how my birthday celebrations have changed!

While it often seems like we have so many forces fighting against us, Chad and I felt like we scored some victories this week.  It feels good to check off those unresolved issues off the list.  We thank God for every victory, big or small, doing our best to take each day at a time.    

The next few months we will be facing some big challenges in her recovery.  We so appreciate your continued prayers and support.  They're not only comforting to Chad and me, but we know God hears every single one.  We love you!

All dressed up for Mommy's birthday
**Thank you Great-Aunt Ginger for the adorable outfit!

P.S. Chad mentioned to me this week that he misses reading your comments on our CaringBridge so feel free to leave one in the comments section below this post.....he's so high maintenance :) jk!

Monday, July 16, 2012

Ribbons & Bows

Ribbons and Bows, Frills and Fun was the theme of Elena's first birthday party.  There was plenty of hustling around prepping all the food, decorations and crafting.  How I pulled it together, I don't know!  I did an ABSOLUTE horrible job of taking pictures at her party.  I realized after everyone left, that we didn't get a single picture of our family or of Elena...bad Mommy.

Here are the pictures that I did get....

Happy Birthday Laney!

 Cake #1
 Cake #2

 The Foooooood!

 The Gift Table 
 Daddy and the Birthday Gal

We really wanted to honor Elena's first birthday giving back to the hospital that saved her life and allowed us to celebrate this special milestone.  Instead of bringing a gift for Elena, we had everyone bring a toy to be donated to the Riley Hospital Cheer Guild.  The last thing we need are more toys anyway! :)  Elena received many toys, blankets and animals while she was a patient, so it was awesome to bring three boxes of toys back to Riley.  To top off the week, my family served a meal on Thursday at the Ronald McDonald House.  As you probably read from our CaringBridge, the RMH was our haven especially when Elena was in the PICU.  I don't know what we would have done without that comfortable space, wonderful volunteers, and plentiful food.  I definitely had to fight back the tears every time a family came through.  It brought back so many memories of exhausted days, thanking the volunteers who served us so many meals.  So much heartbreak there.  We were so happy to offer a smile and a world-famous Frey Coney Dog!

It was certainly a bittersweet birthday week.  Lots of memories, good and bad.  But mostly, we were grateful to be celebrating a birthday and were very busy showering Elena with kisses, hugs and squeezes.  

Wednesday, July 11, 2012

One Year Pictures

One of our dear friends, Sam, recently took Elena's one year pictures.  She did an awesome job of capturing Elena's sweet smiles.  Despite a mere 40 minute nap that day, Elena was a champ!  Here are some of our faves...

Monday, July 9, 2012

Great Expectations

How is it possible that our sweet Elena Catherine is ONE?!

It literally seems like yesterday we were checking into the hospital so anxious to meet our little one.  She entered this world as a surprise (we didn't find out the sex...and were positive she was a boy!!) and has continued to surprise us with her fight and determination throughout this first year.  It has certainly not been the year we were expecting.

A dear friend of mine has a great way with words.  I always seem to have these profound, "aha" moments with her.  We were talking one day and she said, "Emmalee, you're grieving the loss of your expectations."  Exactly.  I had fully expected this first year of Elena's life to be full of crawling, first steps, mama and dadas, Cheerios and happiness.  And when God had other plans, our world crashed.  I have mourned.  I do grieve.  I long for normalcy.  I wish I could be like other first time Moms, taking baby to the zoo, the park, for play dates and more.  But all of those are SO much more difficult with a special needs child.  Our days are filled with doctor appointments, therapy, stretching, and practice eating. My job (full time therapist, part time Mom) is more demanding than I ever could have imagined.  Our goals are different.  Our lives are different.  My Mom who cared for Elena while we were on vacation, called me crying, apologizing that she had no idea what we went through each day and how overwhelming it can be.  It is what it is.  It's not what we expected, but it's our normal.    

While I do have days where we grieve missing out on the "normalcy", most days are filled with toothless smiles, kisses, raspberries on tummies and endless joy.  I know you hear parents say it all the time, but you never really know love until you have a child.  Even more so, you never REALLY know love, until you've almost lost it.  God has used this last year to teach me that nothing is certain.  Our expectations, are just that...ours.  Nothing in life is guaranteed.  Patience really IS a virtue.  It's not our timing, it's His.  And there is no hope without Him.  Elena brings Chad and I joy that we never knew.  Knowing how close we were to losing her precious life, serves as a reminder to us every. single. day. that each moment counts and we are never to take them for granted.

One thing I'm certain, we have no idea what this next year of life will hold for our little family.  But I do know that we will continue to take each day at a time, celebrate each inch of progress and cherish every smile.  Our Elena has set forth on a path that, though it was most definitely unexpected, we know will be a blessed one, shining a light for all.

Happy Birthday our sweet darling.  We love you more than words can say.

Sunday, July 1, 2012


Most of you are joining us from our CaringBridge welcome!  We so appreciate the support you all have provided us over the last nine months.  Our journey is far, far from over.  As wonderful as our CB site has been, we felt a blog would provide us better opportunity to share Elena's road to recovery with you all.

By using this blog, we hope to share with you Elena's amazing journey and the blessings God continues to bestow on us and our sweet girl.  Thank you for loving our girl!

The Hinton's