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.

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.......

And Another One Down....

So long Valium.

We can finally add the LAST icky, yucky, potent medication to the farewell pile.  Elena officially endured her last dose of Valium tonight.  Thank GOD!

My poor, sweet girl has been on more medication in this last year than most people endure in their lifetime.  Valium, Methadone, Phenobarbital, Fentanyl, Versed, Hydrocodone.....sick.  It feels great to have closed a chapter and be able to move forward.

Speaking of moving forward, Elena has continued to make great progress over the last month.  Her head control gets better each day.  We've been working on "prop sitting", which is basically the first step to getting her to be able to sit up on her own.  Elena has been spending time each day in her "stander".  It looks like a medieval torture device, but it supports her in a standing position.  We work so hard every.single.day.  She endures so much.  I know all the stretching of her tight muscles is brutal.  I can see her trying so hard to hold her little head up, even when it falls, she works so hard to pick it back up.  My little girl is a fighter and she makes her Momma so very proud!

We're in the midst of ordering Elena some specialized chairs that will help support her during eating and play.  We are hopeful that these chairs can make things a little easier for her, allowing her to focus more on the task at hand and not having to support her body.

Elena's doctor (one of the many!) remains pleased with her progress and effects from the Botox injections in August.  She will re-evaluate Elena's need for more in December.  Until then, we'll keep plugging away with our therapies and pray for continued progress.

Lastly, I know many of you ask for updates with her eating.  She is still doing well.  We have seen improvements in her coordination and speed.  Our therapist just had us order a new "cup" to introduce Elena to some thickened liquids next week.  It's slow, steady progress.  But we'll take it!

Here are some specific prayer requests for all Elena's prayer warriors!
-Continued improvement with head/trunk control
-Improvement in vision, which is still a struggle for her
-Head growth
-Continued spasticity in her muscles so she can endure less Botox
-Continued progress in eating

Thanks again to all of you for your encouraging words and prayers.  As we approach the year mark of Elena's injury, we are reminded of how impossible our situation would be without your support and our faith.  Prayers have gotten us through this last year and we know they are essential for the rest of our journey!

Elena in therapy showing off her sitting up skills

Happy girl in her new purple chair

Wisdom. Power. Love

Today I was reminded of an old song I used to sing in youth group, “Our God is An Awesome God”. 

Our God is an awesome God

He reigns from heaven above

With wisdom, power and love

Our God is an awesome God

Those words rang true as I was playing the events of the last year over in my mind.  I was reflecting on some recent hurt two of my best friends are dealing with.  As I thought about their friendship, and how much they have helped me this year, my phone pinged with an email.  I moseyed my way over and checked my email.  It was an email from one of the very dear friends I was just thinking about.  This is what she wrote:

“I've been meaning to tell you a few things. First, it struck me on Monday night at Bible study that you are a good, good friend. I mean I knew that before, but the fact that you felt my loss so much that it made you cry, made me realize again how much you care about your friends and feel for them. It really drove home to me what a genuine person you are and I feel so lucky and blessed to have you as a friend. The second thing is that I wanted to say that your leap of faith in starting a Bible study is totally being blessed by God. I know that personally, not only the content of the studies but also the friendships that are being made and experiences that are being shared is nothing short of divine, and since you "submitted" to facilitating that in your home, God has done all kinds of things in people's lives. In some way, I think a lot of that even goes back to Elena...the experience you've had with her may have prompted your desire to seek God and get your friends to do the same, which in turn helped us get closer to God, which in turn will affect each of our own families and husbands and kids...there are ripple effects to everything, and I hope you can see the good effects that have come with Elena's injury, not just the bad.”

I’m not sharing this to dote on my awesome friendship skills, but to begin to pull together pieces of this grand symphony God has been writing all along.  I remember feeling very early on that great things were going to happen as part of our family’s tragedy.  And while there most definitely has been a lot of hurt and sadness as a result of Elena’s injury, it is impossible to deny seeing the good.

I didn’t just suddenly want to start a Bible Study.  This friend and I had been discussing this possibility for at least a year prior to us taking the plunge back in March (totally God's timing).  We had no idea that our small group would share in the tough life situations that several of us are going through (again, totally God's timing).  The studies that “we” chose have perfectly met our needs.  Both studies we’ve been working through seem to have flashing lights with my name on what seems like every page.  God has been fulfilling my desire for the answers I have been seeking in a not-so-subtle way.  

All of this has been a confirmation of what I’ve known since that very moment I received that call on November 3^rd….I am not alone.  I (literally) cried out to God the entire drive to the hospital, the entire time I was “alone” in the ER, those heartbreakingly long days at Riley, our difficult days at home.  He heard me.  He was there.  Always.  God has carried me through the deepest, darkest, scariest time of my life.  With his “wisdom” and “power” He has orchestrated people, events, cards, emails, emotions that have alerted me to His presence through all of this not only to bring me comfort, but to prove He is in control.  What a “loving”, caring God.  I find it completely humbling that in a world filled with problems much bigger than mine, He has sent me comfort, love and encouragement, purposefully guiding me through each step.  How miraculous is that?  It is so beautiful to actually see what God has done in our lives and those who have been touched by our story.  Our God IS an awesome God.   

Coming Through the Wilderness

I've been meaning to sit down and write an update now for a couple weeks, but somehow this month time has continued to escape me!  It's officially the last week of September, and the beginning of fall.  A new season.  

This month we have been consumed with therapy.  Literally, not a day has gone by where we haven't had a doctor appointment, therapy, or commitment on the calendar.  It can all be exhausting but it really is paying off.  We've been so happy with Elena's physical progress this month.  She has been working SO hard.  She is gaining new strength each day and changing right before our eyes.  No longer is she a little baby.  Our Laney is getting so big, so fast!  She is making strides with each of her therapies.  Everyone has been pleased!  

God has been SO good to us this month.  We have experienced some real answers to prayer.  The first being that one of Elena's doctors (who follows her most closely) called me to discuss the results of her swallow study.  She wanted to know what I thought of the test, how I thought Elena had been eating and what my goals were.  ?!?!???!?  I had NO idea what they were trying to get me to say, so I was completely honest, gave my thoughts and said that I trusted her recommendations.  We chatted back and forth for about 10 minutes, when she said, "Well, here's what I was thinking....". 

"I know your speech therapist and I have the utmost respect and trust in her to do her job.  If she thinks Elena is ready to move forward, then I'll take her word for it.  We trust her judgement."

This was not expected, but absolutely the best case scenario we could have imagined.  She didn't cut us off.  She didn't hold us back.  She gave the power to our wonderful therapist who is in the trenches with us every week, working towards Elena's recovery.  YES!

We had another PT start a couple weeks ago, giving Elena therapy an extra two days a week.  From the first five minutes she was here, I knew she was going to be awesome!  She came right in, stretched the crap out of Elena and put her to work.  She was like the missing piece to Elena's "Dream Team".  She has been so helpful in showing me what to do, what to work on and why.  She is a true answer to prayer.  

Looking back at what we have experienced this month, it's obvious to see that God has continued to work in our lives.  We've had so much encouragement this month, little assurances that He's still there holding the reigns.  

My Bible study group just started a new series and our latest lesson was on God leading the Israelites out of slavery in Egypt through the wilderness to new lives in a promised land.  I can so relate to being in a "wilderness".  I've spent almost a year in this wilderness, my faith depleted, my faith renewed, but never abandoned.  I am learning every step of the way, to give thanks, to enjoy, to reflect, to seize every moment, to rely on God.  He continues to give me strength when I need it and most definitely encouragement along the way.  Because my hope lies in God, not in science, nor doctors, ANYTHING is possible.  I know that we will come through this stronger, happier, more loving, compassionate people with a purpose straight from Him.

We are praying for more victories and more YAYs! this next month.  And definitely more kisses for this awesome girl!

The Latest

Oh my goodness.  What a whirlwind the last couple weeks have been.  We rounded out August with a lousy test result.  September began with a flurry of doctor visits and more tests.

We opened last week with a visit from Elena's Nutritionist.  She continues to be very pleased with Elena's weight.  For awhile there, we were really pushing the scales!  Thankfully, we've been able to find the right caloric balance for E and allowed her height to catch up with her weight!  She's still maintaining the 22lb + mark, which still keeps her in the 70th percentile but is nearly 31 inches also in the 70th-ish percentile range. We are so grateful to have found a formula that really seems to be working well for Elena.

Last Wednesday, Elena had an endoscopy.  Basically, they take a camera and go down her throat into the beginning of her small intestines looking for clues as to why her reflux has been so brutal.  They had to give her anesthesia for this procedure, but thankfully Chad and I were able to be in the operating room for the entire procedure.  It was a serious refresher course in anatomy!  She had some major irritation in the back of her throat and the beginning of her small intestines.  They took blood and tissue samples and we should hope to have those results and more information at the follow up appointment this week.  We are praying for some kind of answer that has a medical resolution and not just something that Elena will have to continue to endure.

On Thursday we had a follow-up appointment with Elena's Physiatrist (her rehab doctor).  She was so, so happy with the Botox results!  Elena went from being able to move her leg (out to the side) to a 30 degree angle to over a 70 degree angle.  That's pretty much the best result that we could have asked for.  She was really pleased with Elena's continued progress, awareness and mobility.  She has started us on a weaning schedule of Elena's Valium, which we are thrilled about.  We have wanted to start coming off that for some time now.  We're hoping that we see more awareness, and less fog as she weans.  We just pray that there's not an increase in irritability...it is a pretty hardcore, dependent drug!

Even though we didn't get the result that we were looking for on her swallow study, we have had really great encouragement from her other doctors and therapists.  We are beginning a huge push in working on Elena's head/trunk control, oral work and visual processing.  These really are three very critical pieces that we MUST have improvement on.  We had a new PT start yesterday and I'm already excited to have her on Elena's team.  She came in very encouraged by Elena's muscle tone and ready push Elena to work even harder.  We're so lucky to have the team of therapists that we do.  They all are vested in Elena's recovery and mean so much more to us than just a therapist who comes once a week.  They are our cheerleaders, our encouragement.  This journey would be so much harder without them!

Please continue to pray for Elena's head/trunk control.  This is such a critical piece that so much of her recovery depends on.  I would welcome a few prayers myself.  With our new therapy schedule and new therapy goals, it all can be a bit overwhelming.  Our days revolve around therapy and me ensuring she gets a good nap so that she can make the most of each session.  That can make for VERY long days!  We'll make it work, we might just need a little patience along the way!

As always, thanks for all your love and support!

One Step Up...

Firstly, I want to thank all of you for your diligent prayers over the last week.  I know there were a lot of you praying for us and for a good day today.

It's been a really tough day.  Elena aspirated on her third swallow.  It wasn't a large amount, but any aspiration is not good.  She did fine for seven more swallows and did fine with her puffs.  They didn't even want to try liquids.

This is a huge disappointment.  My heart broke for Elena.  She has worked so, so hard over the last eight months, relearning how to eat.  To get a big F on the third swallow is just heart breaking.  She was such a big girl today, not intimidated by all the people and big machines.  She took her bites so well.  I'm so proud of her.  I just wish the outcome would have been different.

I felt like I had prepared myself for some level of bad news, but both her therapist and I did not expect her to have trouble with the food.  She's been completely healthy for eight months, never coughs during feeds and has improved drastically with the amount and time it takes her to eat.  We just don't know what happened.

I'm so thankful that Elena has the best speech therapist.  She was there every step today, supporting and encouraging me despite the bad news.  She is determined to make Elena an eater.

I KNOW how far Elena has come since November and I KNOW there are certain to be disappointments along the way, but it still hurts.  I just can't help but think how hard it is for Elena to eat...something we all take for granted every day.  It just isn't fair.  One step up, two steps back.  My poor, sweet baby. We don't think the doctor will cut her off food, which would be worst-case scenario, but we certainly won't be moving forward.  We'll just keep working with her and praying that she'll continue to get stronger every day.

Finishing Strong

Here we are, another month gone by...the last week of August.  What a wild month it has been.

We started the month praying the Botox would do great things for Elena...and it has!  We continue to see such an improvement on her legs.  We've prayed and prayed that it would be a "game changer" and it's too early to call but we've been ecstatic with what we've seen.  Her legs are so maneuverable now.  It must be such a relief for her not to constantly be in extension, tiring those poor muscles!

She is now in therapy five days a week.  It's a bit exhausting, having something every single day.  I'm constantly watching the clock to make sure she gets good naps each day, so she can be ready to work hard in her therapy sessions.  It's pretty limiting, too, on what we're able to do outside of the house but seeing that her recovery is our absolute priority, I'm willing to do anything for her.

As of today, we've officially said goodbye to the three-hour eating schedule!  Woooohooooo!  Since those last few days at Riley, we've spent hundreds of hours with Elena on our lap every 2.5 hours for a 30 minute tube feeding.  I'm afraid to actually calculate the actual amount of time we've spent feeding her over the last 10 months.  Our lives have been on an 8am, 11am, 2pm, 5pm, 8pm schedule for far too long!  She's been tolerating her toddler formula much better so we have bumped up her volume and are now on a 4-hour schedule which is going to be GREAT!

We met with Elena's Neurologist last Friday.  It was a bit better than I had anticipated.  She was happy that we haven't seen any problematic seizure activity, so Elena will continue to stay off her seizure medication for now.  She is still at an extremely high risk, so we'll pray she'll continue to be seizure-free.  We are still disappointed that Elena has yet to have any head growth.  It's certainly one of the harder things we've had to accept.  It doesn't mean that she won't ever have any growth, but the doctors would have liked to seen some by now.  But, all we can do is continue to pray, rejoice in every bit of new progress that she makes and savor every smile and giggle she gives us.

This week rounds out our big month.  We see a new GI doctor and have her swallow study at the end of the week.  Please continue to keep us in your prayers this week.  Friday will be a very anxious day.  Elena has had a bad cold all weekend, so pray that it's all cleared up by Friday so she won't have anything else complicating her eating.

I want to end on a good note and show you some huge progress Elena has had in the last week or so.  She's had a sudden burst of head control/strength!  I remember putting her on her tummy one day and her little head shot right up to watch her beloved Tigger do some bouncing!  Since then, we've noticed a huge leap in her ability to hold her head/torso up longer and higher.  This is HUGE for her development.  Little prayers like this, that we've been praying for months are being answered!

 (Excuse the bed head, we were just up from a nap!)

 Hard to see them here, but she's sporting her first pig tails!

 Playing with Daddy before bedtime

Trying to sit up like a big girl!

Yay for new skills!

P.S.  Thanks to those of you who sent us messages/notes this past week.  You blessed us beyond belief.  I'm always amazed at the lives (even of those we've never met!) Elena continues to touch.  God has given her such an amazing story with a purpose!

Being Grateful

This roller coaster we have been on for the last nine months is constantly sending us soaring high and dipping low.  Often times, all in one day, I will cry because I'm happy and because I'm sad.  I'll be so excited about something Elena did that day and full of sorrow the next because I'm reminded of how far she has to go.  It's such an emotional ride.

In the midst of sorting through all the emotions, I find that most the time I feel so very grateful.  I'm grateful that Elena is here, alive.  I'm grateful that I get to spend my days with this precious child.  I'm grateful that we have so much love and support always surrounding us.  I'm grateful that despite the horrible things we have had to face, God has blessed us with His grace and mercy every day.

Even more simply, I'm grateful that Elena looks at me, making eye contact.  I'm grateful that she smiles and coos at me when I'm silly.  I'm grateful that she laughs when I tickle her or the most recent fave...when we make animal sounds.  I'm grateful for the simplest of things, because I know that there are parents who live without these tiny gestures from their children every day.  Elena continues to be one of the happiest, sweetest, most loving little babies....not to mention so cute!

For this, I'm grateful.

Loosey Goosey

The first stressful appointment of the month went very smoothly last week.  Thanks for all your sweet messages and prayers!  Elena handled the injections much better than I did (per usual).  Luckily, Chad was working from home that day and was able to go to the appointment with me.  So while I was trying to calm Elena, he could calm me :)

They injected her four times in her inner thighs.  Chad and I noticed results the next morning when changing her diaper.  I can't tell you how difficult a task it can be when her legs are are locked and extended.  It was amazing to see her little legs flop around without much resistance!  We call it being "Loosey Goosey!" Over the last week, we have been in awe of the difference four little injections have made.  Now we just have to work on strengthening those muscles with therapy!

We enjoyed some relaxation this past week too.  We were lucky to spend some time with Chad's best friend and his family up at their lakehouse in Charlevoix, Michigan.  They live on the west coast so we don't get to see them very often, but it was great to relax and enjoy!  It was officially our first family vacation.  Elena did great with the 7 hour drive and enjoyed the view from the deck at each feeding.

 Our view

 Laney's first boat ride...she LOVED it!

Erin & Holden with Laney & me boating to lunch

Another answer to prayer has been Elena's reflux.  For whatever reason (I'll chalk it up to your prayers!), we've seen a big improvement.  While she still struggles with the "refluxing", she's had only one small vomit in the last week.  We were getting used to one a day, so that's a HUGE improvement!

She has a Neurology appointment next week that we'll need your prayers for.  And keep praying for her swallow study at the end of the month.  She had a terrible speech appointment last week, which of course gets me even more anxious for her swallow study.  So pray, pray, pray!

Last but not least........they have arrived.  Elena's teeth that is!  She finally cut her first tooth and is working on #2 and #3!  It only took 13 months :)  In true Laney form, she's pretty indifferent about them, doesn't fuss and not too much extra slobber.  Always cool as a cucumber, that girl!

Big Month, Big Nerves

It's going to be a big, big month.  We're going to need lots of prayers!  I'm already anxious about all the appointments we have in August.  It really feels like the next couple of months will be very telling of Elena's prognosis for her long term recovery.  As I mentioned before, it has seemed that things have been coming together.  We've had lots of different issues floating around, while Chad and I have been trying to wrangle them and get everything under control.  It finally appears that we're on the right track and things are getting resolved.

Next week, the 9th, Elena will finally be getting her Botox injections.  We have VERY high hopes for this procedure.  Right now, Elena's tone is really dictating her progress.  It's been a vicious cycle of...she can't do this...because she can't do that...and because she can't do that....she can't do this....and so on.  It all comes back to getting her muscle tone under control.  We are praying the Botox can give her the edge she needs to overcome the nasty muscle tone that keeps her so rigid and uncomfortable.  Ideally, once her tone gets under control, she'll have an easier time with her motility, hence making progress in just about every other area we've been working.  So, prayer request #1 (of many!) is that the injection process goes well (for Elena and Mommy who has to watch her baby get injected many times).  #2 is that we get the desired effects from the medication and we see some great progress.

Since we're beginning the Botox treatment, we're upping her physical therapy each week.  We have a Home Health company coming out next week to evaluate Elena and begin more therapy 1-2x more per week.  That means saying goodbye to more "free" time each week.  Elena will have PT 2-3x per week in addition to her Speech and OT.  Therapy 5x per week seems pretty daunting at the moment.  But...anything to give my girl an extra edge.  #3 pray that we can manage this increase in therapy and more importantly that Elena shows some good improvement.

We have a swallow study scheduled for the end of the month.  This is huge.  We've come a very long way since we began oral feeding in January.  We could barely manage a few squirts of an eyedropper then.  Now, we're working on liquids, puffs and spoon feeding.  I'm very, very anxious about this test.  It will give us much more information on Elena's swallowing abilities.  This test will dictate Elena's feeding for the foreseeable future.  I just don't think Chad and I can take any more setbacks at this point.  So #4 pray, pray, pray that Elena can give a good test and there won't be any major issues revealed.  I'm already nervous just writing about this!

Lastly, Elena has two major doctor appointments this week.  The biggest of the two is her first appointment with a GI Specialist.  As you know, we've been fighting horrible, awful, raging reflux since getting her G-tube.  I can't even explain to you how heartbreaking it is to see her struggle with this.  Nothing has helped.  She's been on three different meds, special formula, sleeps on an incline and still fights it all day and all night.  #5 pray that the doctor will be helpful and offer up good solutions other than more surgery.  In all my research, I'm aware of the surgical options and I really, really, really don't want to have Elena go through any more hospital trauma.

Her other appointment is with her Neurologist.  We don't expect anything major, since she's done great being off the Phenobarbital.  However, EVERY doctor appointment is anxiety-ridden and since she still hasn't had any head growth, we don't want to hear any more bad news.  #6 pray for her sweet, little head.  It's heartbreaking every time they pull out that tape measure.

As you can see, I'm likely to be a ball of nerves all month long.  We so appreciate your prayers and notes.  Just this week, I received a card from a dear family that, even though I haven't seen in probably 10 years, I think about very, very often.  You have no idea how much those mean to us.  So, thank you again from the bottom of our hearts for all of your love, support and encouragement.  It helps us stay positive and keep going.

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.  

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!

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.