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!

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!

2012

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

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