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!