Tuesday, January 29, 2013

This 'Lil Blog 'O Mine..

This little blog of ours is constantly proving to be very powerful and much bigger than an outlet for my emotional ramblings!  When we began our CaringBridge, it was in response to the overwhelming outpouring of support and concern for our family those early days at Riley.  It was a way for us to communicate what what happening medically with our little gal.  It became a way for us to document those days and capture our raw emotions as we shared it with you all.  Not only that, but it served as way for you to communicate your prayers and words of encouragement to us.  I still remember sitting on that couch in the ICU with Chad each evening, reading your comments, humbled by your messages.  There were so many beautiful words from friends, family, friends of friends and people we have, nor ever will, meet.  We were amazed by how Elena's story was touching peoples' hearts all over the world.

I'm still amazed at how Elena's story continues to spread, reaching people across the country.  Just a couple weeks ago, I was in tears over a recent comment on the blog from someone, who knows someone, who knows my Mom.  I can't express how much it means to receive those comments and to know that one more person is rooting for Elena.  Gosh, that girl is LOVED!

This week, a package arrived on our doorstep with an adorable knit hat, just in Elena's size.  It was from a family, who heard our story, that runs an organization called Fishies of Hope.  The family honors their son's life with this project.  I can't think of a more beautiful way to honor a child than to share hope with another family whose child faces difficult circumstances.  We often underestimate the meaning of letting a person (even a stranger!) know that someone is thinking of them.  We also received a heartfelt note from them. They wrote, "The world is watching your faith as God leads you down this path.  You are an inspiration to families everywhere."  Gosh!  It made me realize that this blog is so much more than just a little blip in the internet-universe.  Elena's life was changed in an instant and because of that, she has touched the hearts of so many.  We share her story of resiliency, our story of faith and hope.  This 'lil blog has helped show us that no-way-Jose are we alone!  Not only is God present in our every day lives, but so are all of you!  We honestly feel your prayers.  We thrive on your encouragement.  God is using Elena to touch your heart, and in turn, use you to comfort ours.  Wowza!  That Big Guy, he really does know what He's doing!

I love being able to share with you what exciting progress Elena continues to make.  Slowly but surely, many of your/our prayers are being answered.  Lately, Elena has been on an upward swing.  Just in the last month, we've seen big improvement in her vision.  She has been looking at lots of different colors (she used to only look at black/white and gold).  When she looks, I feel like she is REALLY looking and is able to sustain her glances longer than the 1-2 seconds she had been doing.  We've seen her trying desperately to touch the objects we show her too.  I know she WANTS to touch things, but struggles with "motor planning" which basically means her brain telling her body (arms/hands/legs) what exactly to do and how to move.  It'll come.  She'll get better.  We're already seeing improvement.  She's learning to understand us better too.  She knows what to do when we ask her to "look at Mama or Dada".  She understands the words "bites", "hands", "drink", "stand-up".  Even though she can't communicate verbally with us, she shows us that she knows what we're asking of her.  She was up on all fours the other day!  I was so wishing she would just take off across the floor, crawling!  It is just so exciting for us to see her achieve these "inchstones".  Every little new thing she does is a miracle in itself.  We're just so darn proud of her!

I will end this marathon post with a few prayer requests.  We often get asked about "specifics", so here ya go!

-Pray for continued improvement in her vision, this is HUGE in her development!  And so painstakingly tedious for us to work with her on.
-Pray for continued motor improvement, especially with her arms/hands
-Pray for her hip.  Hip dysplasia/dislocation is very common in kiddos like Elena and the tightness of her left side is already showing some potential issues with her left hip.  We'll need a miracle here to prevent future hip surgeries/complications.
-Pray for head growth.  Elena's head grew 1/2in at her last Pediatrician appointment after a year of nothing (YAYAYAYA! and it wasn't her hair!).  Keep it growing!!

This is one amazing little girl I have.  We are so, so very thankful for her and her life.  Chad and I were talking the other day that it honestly feels like we love her immeasurably more every single day.  She is so special.  I can't wait to tell her one day about all of YOU, who have loved her and prayed for her every step of the way.  Thank you for continuing to follow our story and for continuing to think of our family.  We are forever grateful.


Elena got her 4th Haircut today and STILL had enough for pigtails :)

Elena and Daddy are playing a game we use to get her to work on eye contact...this night she thought it was hilarious :)

Friday, January 18, 2013

Botox Round 2

For the most part, all went well yesterday.  Elena did as well as one can do when getting shots.  Mom and Dad did as well as a they could do when their daughter is getting a painful procedure done!  She received Botox in her thumbs, inner thighs, calves and a muscle under her armpit.

We are praying that this round brings her similar results that we saw last time and some relief for her always-tense muscles.  Thanks for all the messages and prayers yesterday!

Thursday, January 10, 2013

Forgot the Pics!

My scatterbrain!  I totally forgot to post the pictures of Elena's progress!  Here you go!

**Excuse the crazy hair..she usually has wild hair but it gets EXTRA wild during therapy :)

Here she is "tapping" last night.  She lost her clothes after Speech Therapy...they were covered in yogurt!

It's Going to Be a Big Year!

Yesterday, Elena's Speech Therapist was here and at the end of her session, she looked at me and said, "2013 is going to be a big year for Elena."  My eyes immediately brimmed with tears, because so much has begun to come together for our little gal.  I pray so hard every day that this prediction is true.  I pray that next January I can say that 2013 brought us so much progress, excitement and pride for our Laney.  For now, she is making big strides and we're so excited!  

She LOVES to eat!  I can't believe I finally get to type out those words.  We've waited so long for her to open her perfect little mouth for the spoon, to eat an ounce of food in just a couple minutes (compared to the 20 mins+ it used to take her), to actually enjoy the taste and having something in her mouth.  She even was sucking on her fist yesterday during her feeding session.  This all has been a HUGE accomplishment for her.  Anyone who has seen the feeding routine we have practiced every single day in the last year, would be amazed at her progress.  She sees her Nutritionist next week and we're hoping, praying she will begin to drop a little bit of her g-tube feed and replace it with FOOD!

Elena is oh, so close to sitting on her own.  Some days, she keeps her balance for minutes, and others just a few seconds but she's working hard.  It's still so tough for her to keep her little head up.  We continue to be encouraged by the progress she shows.  They tell us that if she can sit on her own by two years old, it is a good sign prognostically.

She been such a happy girl lately.  We have so much fun together.  She laughs at all the silly things I do.  Nothing in this world compares to Elena's belly laugh.  I never tire of it.  Yesterday, I had her all strapped in to her "Tucker Sling", turned on some music and watched her little feet tap the floor.  It was so funny!  She's understanding more words, commands and games that we play.  Even though she can't communicate easily with us, she finds ways to show us that she understands.  She loves when Chad or I ask her to "look at Mommy/Daddy".  We all squeal with delight when she finds our eyes.  

There are two areas where Elena really continues to struggle and where improvement has been lacking.  The first is her vision.  Though structurally her eyes are fine, she suffers from a "Cortical Visual Impairment".  That basically means that she sees, but her brain can't comprehend what she sees.  Hence, her difficulty in looking at really anything.  I often try to imagine how difficult it would be to look around a room and it only be a swash of indistinguishable color and depth.  It would be horribly overwhelming.  The good news is, that unlike many visual impairments, she can improve this condition.  We are flying to Pittsburgh in March to see a nationally renowned CVI Specialist to learn more about Elena's condition and what we can do to help her.  We're also fortunate we have an amazing Occupational Therapist who specializes in vision impairments.  We are hopeful that one day, Elena will be able to easily look at her Mommy and Daddy and recognize us by our faces and not just our voices.  

The other area of difficulty is Elena's upper body.  She is not yet batting or reaching for toys.  We aren't sure if this is a cognitive issue or just that her muscles remain very rigid and difficult to move around.  Elena will be receiving her second round of Botox next week.  We will need LOTS of prayers next Thursday...for Elena and for me.  She'll be getting injections in her inner thighs, pecs, biceps, thumbs and hamstrings.  The injections are very time staking, tedious and painful.  Last time she only had injections in one place and it was heart-wrenching.  We need prayers for all of us to get through that appointment and that we will see the same amazing results that she has with her last round.   

I will sometimes sit and think about my precious Elena walking, feeding herself and looking at me saying Mama.  I'm realistic that these things aren't likely to happen in 2013, 2014 or maybe even later, but in my heart, I'm determined that she will do all of those things.  I think about how overwhelmed with pride and joy I will be in each of those moments.  Those "firsts" are yet to come, but for now I'm just as content to see her now-toothy smile and hear her giggle when I tickle under her chin.  I know her Speech Therapist was right, 2013 is going to be a GREAT year for my girl.  

Thanks for your continued prayers for our family.  They still mean just as much, if not more, today!

Wednesday, January 2, 2013


We knew 2012 was going to be a tough year when we "celebrated" NYE on a couch in a Riley hospital room.  Elena's stay was short that time and we are thrilled it has been a year since we've spent time there.  We've had a healthy year, but it hasn't been easy.  When I reflect about where we were January 1st, 2012, I'm so happy to know how far we've come.

Last January, Elena screamed and cried HOURS out of the day (and night).  She ate mere drops of food  from a eye dropper.  She projectile vomited her g-tube feeds every day.  She was rigid, stiff and could barely move.  She didn't smile.  She didn't laugh.  She wouldn't look at us.  She couldn't hold her head up for one second.  Our house was a pharmacy of powerful medications.  We were sad.  Exhaused.  Heartbroken.  I cried and cried and cried, so much so, that I barely remember feeling happy at all.  We were just trying to survive.  I was so scared of what the year would bring.

Thankfully, it brought progress.  It brought hope, smiles, laughter and happy tears.  It hasn't been easy.  Every step of the way has been hard fought, each of us pushing ourselves to the brink of what we thought was possible to bear.  But, it feels sooooooooo good to say we are a million gajillion times better off than where we were last year.  My prayer is that I can say that every year for the rest of my life.  I can't possibly imagine a year harder than the last.  We trust that God has a plan for us, for Elena.  There will continue to be examples of God's love and grace.  We continue to cling to each other and to the unceasing support from our loving family and friends.

I'm grateful to not have to "hope" for God's blessings this year.  I know they're coming.  They may not always come with a giant bow on your doorstep, but when I look, when I reflect, I can see them lining our every step.  I pray that this year, you will take a moment every day to see the wonderful gifts you have been bestowed.  I pray you take time to be grateful not for the "stuff" in your life, but for the people, the relationships, your health, the things the actually matter.  And if you find yourself in a dark time, I pray that you too will find a shining light to give you hope and know that you are never, ever alone in your struggles.

Happy 2013!

"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