Tuesday, December 31, 2013

Goodbye 2013

Oops!  December flew by with barely a blog post!  My bad!  I think December has been like the rest of the year....gone in a flash.  I've barely had time to breathe this month.  But, I'll get to all that later.

2013 had its fair share of ups and downs.  The year started a little rocky for us but as usual, hope and happiness sprung back to the top, and here we are eagerly anticipating an exciting 2014.

We survived the bleak and cold January in Indiana.  In February, we all enjoyed some desert sun for a week with Gramma & Grampa in Arizona.  Elena turned 18 months old, which now seems like eons ago.  In March, it felt like we finally received some positive news after our initial visit to Dr. Roman (Elena's vision specialist in Pittsburgh).  April brought warmer weather to Indiana, which is always a mood booster!  May was my second Mother's Day and I was able to capture four generations in pictures with my Mom and Granny Velma.  My present this year was purchasing our new house, which was bought as an uggggly duckling and should be becoming a swan in a few weeks!  In June we enjoyed fun and sun, first in Martha's Vineyard with some of our best friends.  Then, later in the month we traveled to Santa Barbara for a vacation from our vacation! :)  July always brings celebrations.  Elena turned the big T-W-O and I relished my last birthday in my young and hip twenties.  Our summer ended in August when Elena began therapy twice a week at The Jackson Center.  And we found out I was expecting!  September came and went quietly, mostly.  Elena endured the first of likely many surgeries on her hip in October.  Thankfully, we have been happy with how well everything went and continues to go for her hip.  November was a whirlwind month with trips to Pittsburgh (back to see Dr. Roman), Louisville (to see another specialist) and Seattle to visit with dear friends.  And finally, December!

December has been a month of preparations.  Elena prepared for many weeks for her role as an angel in the Jackson Center Christmas Program.  I spent time planning for presents, meals and all things Christmas.  We had a wonderful Christmas.  For once, we stayed put and enjoyed being able to relax and enjoy the holiday instead of traveling on a strict time schedule!  The last couple weeks we have been frantically cleaning out and cleaning up our house to go on the market, actually today!  Much like 2013, we are ready to close the chapter on this sweet little house and settle into our new life in Zionsville.

And while it's true, we end the year with what feels like an overflowing (or overwhelming!) plate, I can't help but be so grateful for where God has placed our family.  Things just feel right, like we are where we are supposed to be.  It feels good to be starting a new chapter of our lives together in a new town, in a new house, preparing to welcome a new member of our family and cherishing our sweet little girl (and you too, Pete!).  We could not be more thankful for all that God has blessed us with this year.  This past year I have learned that life rolls on, whether you're ready for it or not.  All we can do is just roll with where it takes us, find the good amidst all the bad, love each other through every struggle and trust in our faith that we'll end up with the sun shining and the good Lord by our side through it all.  So far, I'd say that's pretty much how it happens!

Thanks as always to each and every one of you who continue to follow our story, praying us through every step.  We know there are still so many of you who think of our Elena daily and we could never say thank you enough for every prayer you say for her.  She is our inspiration and the light of our lives and we are blessed that we can share that very special piece of her with all of you.  God Bless and Happy New Year!

Friday, December 6, 2013

An Early Christmas Present

We received an early Christmas present this morning.....

We learned that sweet little thing is Elena's little brother!  We'll be expecting him to arrive later this spring!  We couldn't be more thrilled or feel more blessed.  2014 is going to bring many changes to our little family.

For today, we're just hanging out on Cloud 9.

Wednesday, December 4, 2013

Whirlwind November

The last three weeks have been a complete whirlwind!  Actually, the entire month of November was gone it what seemed like three days.  I'm just now catching my breath and turning focus to December and all things Christmas.

In the month of November we supported the Ronald McDonald House, traveled to Pittsburgh, took Elena to a doctor appointment in Louisville, hosted my parents for ten days, welcomed a nephew, traveled to Seattle, endured a bout of food poisoning and celebrated Thanksgiving......WHEW

So, let me rewind a bit.  The Frey family welcomed its newest little member on November 20th, Samuel Vincent!  We were all so excited to meet him.  Elena got to go to the hospital and hold her new cousin.  It's all been very exciting!  He's a sweet little guy.  It's hard to remember Elena being that little...makes me wish for her to stop growing up so quickly.

Soon after Sam's arrival, we jetted off to Seattle to visit our good friends for the Thanksgiving holiday.  We had such a great and relaxing time.  Seattle is such a cool city and makes us often question why we live in Indianapolis :)  I would be quite content to live close to mountains...and no, southern Indiana doesn't count as mountainous!  Elena enjoyed all the attention her buddy Holden, who is just a few weeks younger, gave her.  He loved giving her kisses (with Dad present, of course), hugs and brushing her hair.  It was pretty sweet.

All was great until we woke up to leave Thanksgiving morning and found ourselves doubled over with food poisoning.  We were unable to change our flight without forking over $2000 so were forced to travel the 8 hours back home deathly ill, with a two year old.  Elena was an angel and did great, which was a miracle considering Chad or I could barely care for ourselves.  It certainly made for an interesting Thanksgiving!

Now, on to Christmas!  Elena stars in her first Christmas program tonight at the Jackson Center.  I'll be sure to post pictures and videos of her breakout performance later this week.

Hope you all had a wonderful Thanksgiving and took time to remember just how much we all have to be thankful for!

 Laney & Sam
 Aunt Emmalee & Sam
 Family pic in Seattle

 @ the Chihuly garden

  Pretty shot of Mt. Rainier

Wednesday, November 13, 2013

Back to the 'Burgh

We just got back from another doctor's appointment.  Buuuuuuut, we had to go all the way to Pittsburgh for this one.  Seems crazy right?  You may remember us making the trip back in March to see Dr. Roman, who is like the world's greatest guru on Elena's vision impairment.  Well we just had our follow up appointment with her and I can't wait to tell you about it.

First, a quick refresher.  Elena suffers from a Cortical Vision Impairment.  When we were in the hospital with her, the doctors kept telling us that she may be blinded from her injury.  So, when her Ophthalmologist told us her eyes were perfectly healthy, we were so relieved she wouldn't have any vision impairment.  That's when we learned that Elena's vision impairment doesn't actually have to do with her eyes.  The disconnect is that her brain has trouble actually interpreting what she sees.  You may remember, too, that CVI does get better with proper attention and therapy.

Enter Dr. Roman.  I can't even begin to describe how amazing this lady is.  She oozes with knowledge and a passion for CVI.  We were so amazed by the explanation and information she was able to again share with us.  It really is fascinating.  She is WELL worth the 12 hour round trip to Pittsburgh for a two hour doctor appointment!

She spent quite a long time with us talking about Elena then evaluating her.  It's so amazing to watch.  She is able to get Elena to look at things so quickly and really break down how she is seeing it.  I should video tape it because it never ceases to amaze me!  Anyway, she has come up with a scoring system for children with CVI based upon what and how they see.  I think I mentioned before, it's very possible to for a child with CVI to go from basically being blind to able to functionally see, or even read, which is miraculous.

Dr. Roman was so thrilled with Elena's progress.  She even got teary at one point (another example of how passionate she is about her patients!) about what strides Elena had made in just six months.  Elena moved up 1.25 points on the scale!  This is HUGE for such a short time period.  Praise God!  Dr. Roman took a great deal of time to explain our next steps for Elena's therapy and what our focus should be for the next several months.  We feel very confident in our ability and her therapists to be able to integrate this into our routine to continue her improvement.

Again, we left there feeling empowered and acknowledged.  As a parent who fights every day for their child to succeed, I can't begin to tell you how important that is.  There are many days that our efforts feel futile, but this just reinforces that Elena has SO much more to prove.  She is so much more capable than even Chad or I give her credit for.  We are so proud of how hard our girl works each and every day.  We'll just keep trucking along, pushing her harder and watch her achieve!

Elena got to go swimming with Daddy at the hotel!

She looks unsure, but she did pretty well in a queen size bed all to herself!

A silly selfie with Mommy!

Tuesday, November 5, 2013

Ronald McDonald House

Last Friday evening, 18 of our dearest friends gathered for a night of fun and charity at the annual Ronald McDonald House fundraiser.  You may remember me blogging about this event last year.  We doubled our numbers our this year and were able to sponsor two tables in honor of our sweet Elena.

As many of you know, the RMH is so near and dear to our hearts.  We spent hours upon hours at the RMH inside Riley.  Chad and I spent a couple nights there actually in a real bed, as opposed to the bench and recliner in Elena's hospital room.  They offered us a hot shower, hot meal, laundry facilities and warm volunteers.  Our family and friends used the RMH as a gathering place to show their support of us each and every day.  We have happily volunteered our time and financial support in order to pay forward just a little of what they offered us.

We were so blessed and quite frankly, moved to sobs (tears doesn't fully capture the emotion!), when our dear friend Amy stood up during the "share your story" portion.  She so beautifully captured what the RMH meant to us.  We were so appreciative of her outpouring of support for us, but also that it hopefully inspired other attendees to donate to the worthy cause.

Chad and I are so very fortunate to have a group of friends who are family to us and are so incredibly thoughtful.  Your support means more than you could ever imagine.  Thank you to the Ertel's, Ledford's, DeMoss', both Frey's, Koriath's, Farrow's, Rittenhouse's and Julka's for supporting the RMH and our family!  Let's make it THREE tables next year!

The whole gang!

Sunday, November 3, 2013

Two Years Later

Two years.  In some ways, it feels like a lifetime ago.  In others, the memories flash back like it was just yesterday.

November 3rd will always bring back the memories, the horrible, nightmarish memories.  Today I've already relived that drive to Riley; me racing into the emergency room.  Panicked.  Hysterical.  Literally not knowing if my baby was going to arrive dead or alive.  I can still feel the screams building in my throat.  I can still feel the fear, the unbelievable fear tearing apart my insides.  I can still hear my own pleadings with God, begging for my daughter's life.  I can still see her little body on that table with the doctors and nurses rushing around.  I can remember wondering when I was going to wake up from that nightmare.  Every minute of that day, every emotion of that day, every thought of that day is seared into my mind.  I will never, ever forget them.

But thankfully, I know how that day ends.  My little girl lived.  She was saved.  

I remember all those horrible memories of that day but I also remember the faces of friends and family, who rushed to the hospital to be with us that night.  To be at our sides.  To offer hugs, a shoulder to cry upon.  To support us by simply being present.  I remember the next 21 days, never being alone.  I remember the meals, the hugs, the tears, the texts, the emails, the phone calls, the cards, the flowers, the prayers, the love.

November 3rd will always bring back a flood of memories and mixed feelings.  But with the bad, I choose to remember the good.  I choose to see that my girl lived.  She smiles.  She laughs.  She is joy.  I choose to remember the love we felt and feel every single day for her and for our family.  I choose to remember the amazing family we have and friends who are family.  I choose to remember that with the horrible evil that closed in on us that day, we were immediately enveloped in love.

So two years later, I am choosing each day to let go of the hurt and remember the love that has surround our family.  Today, I'm going to love my girl to pieces and rejoice in her life, her smiles, her joy and the light she continues to shine.

Tuesday, October 29, 2013

Quick Surgery Update

I wanted to post a quick update on how Elena's surgery went today.  We had so many messages from all you who were thinking and praying for us today.  Each one of them meant so much.  We are continually amazed at how much love and support you all show for our girl.  It definitely made our day easier.

Mom definitely shed more tears than Elena did today....not surprising though! Honestly, the toughest part of today was saying goodbye and watching them roll our little girl in a big hospital bed away from us.  Once we were through that, the rest of the day went very quickly.

The surgeon was very pleased with how everything went.  He injected dye into Elena's hip to get a better picture of what was actually going on.  The good news, rather great news, was that her hip wasn't as dislocated as the x-ray made it appear.  It's definitely still a major issue and her hip socket isn't developing correctly, but thankfully, it's not as bad as we had originally thought.  He went ahead and released her tendon and did another round of Botox.  Hopefully, this will help continue to buy us time.  Elena has been the real champ.  She's barely fussed all day and continues to amaze us with her ability to gracefully endure.  All in all, Chad and I were very relieved and happy with how the day turned out.

So, thank you, thank you, thank you for all your prayers today.  They are so appreciated, more so than you can imagine.

Monday, October 28, 2013

Prayers for Tomorrow

Tomorrow is surgery day.  Ugh.

The last couple weeks leading up to this have been nerve wracking.  I can feel the apprehension rising with each day.  I'm filled with dread knowing that I'm putting my baby through something that's going to be painful and that she won't understand.  It's awful.

Then, there's the constant back and forth in my head whether we are making the right decision or not. Logic says yes, but it doesn't lessen the internal struggle.

I've just been saying a hundred little prayers a day that we're doing the right thing....that this will help....that pain will be minimal....recovery will be quick....that she won't wonder what's happening to her.

So, prayers are welcomed today and tomorrow and the rest of this very long week.  Our calendars are cleared for the week, which will be a struggle in itself, since we're used to a series of therapies every day.  Here are some specific requests:

-Surgery goes smoothly without complications
-Pain is minimal
-Mom & Dad's nerves and guilt
-That this surgery will be successful in slowing the dislocation of her hip
-That this surgery won't cause any regression in her physical abilities
-This round of Botox injections will again get great results
-Recovery will be quick and we can get back into therapies by next week

We easily remember how your prayers sustained us when we were in the hospital with Elena.  So, thank you for thinking of us this week and sending up a few prayers.

Sunday, October 20, 2013

My Apologies!

My darling husband called me out last night.  And he was right...for once!  He casually mentioned that I hadn't been blogging very much lately.  I mumbled some excuse to play it cool but it did get me thinking...and obviously got me writing.  So, my apologies for the lapse in blogging!

For the most part, I'm getting used to this gig.  I am finally starting to get glimpses of what Elena's life, what our lives, will be like.  Looking back to two years ago, leaving Riley we hadn't a darn clue.  We were still praying that it was all a bad dream.  We were still hoping that she'd be the same once she got off her meds.  We were still pleading with God that she would be completely healed from her terrible injury and be the Elena that we knew.  Well, she is still the Elena, on the inside, that we knew, but her physical and mental challenges will forever continue to be great.  But that's ok.  I'm learning to navigate this life.  And I think my lack of blogging, especially my deep down, soul-bearing blog posts are a result of that.

I have struggled for SO.LONG. with the why's, with the anger, with the despair, with the longing for a "normal" life.  I now understand that no matter how mad I am or how sad I get, will any of this change.  For a long, long time I never thought I would emerge from the wilderness, from the darkness that surrounded us, but it finally feels like we're coming through.  It doesn't make anything easier.  It doesn't make Elena's struggles better.  It doesn't make my heart hurt any less for what she'll continue to endure.  But it does allow me to focus on the present, on watching our baby grow into a little girl, on having the privilege of watching her little personality shine through her physical challenges.  It allows me to live.  Most of the past two years have been spent going through the motions, learning every day what our family will face, and hoping for a different outcome.  I'm so ready to be over that.

Elena's challenges are always going to be there.  When one seemingly gets better, inevitably something else will pop up, but loving her just the way she is and giving her the tools to navigate the best we can through these challenges is our only job.  God has really used the last couple months to show me so many of blessings he has bestowed upon my life.  Really, without all these blessings our situation would be immeasurably more difficult.  Through all of the bad, God has given us so much good.  All of the times I couldn't muster the faith to believe we could make it through this, He never left me and gave me just the smidge of hope to cling to get me through.

Now, don't get me wrong, there are still bad days.  There are still going to be a lot of bad days.  I'm never going to be free and clear of the hurt.  I'm always going to wonder what life would've been like had November 3, 2011 never happened.  I'm always going to wonder what Elena would've been like, to watch her run, to watch her jump into a pool, to go down the slide all by herself, but it's just going to be different for us.  For now, I'm just content that the struggle and the hurt aren't running my life every day.

Mouseketeers have BIG ears!

My happy girl.

She's just the sweetest!


Wednesday, October 9, 2013

Catching Up

So I've been meaning to blog almost every day for the last two weeks, but the days are getting away from me and I'm just too darn tired in the evenings.  We have some catching up to do!

We're trucking right along.  Elena continues to thrive at the Jackson Center.  She is officially over the "cry for the entire three hours because I don't know any of you" phase, which is a relief.  We've seen such a boost in her head/trunk control since she started.  All the extra therapy is paying off.  It's great for her socially (she has a very "special" friend in class, who happens to be a boy) and I get great reports of her achievements each day we are there.

Our house is FINALLY coming along.  We exited the long, very long, design phase a couple weeks ago and our contractor has officially started work.  It's been really exciting to see the progress each week.  And though, overwhelming, picking out all our finishes has been fun.  It's great to see it all come together.  We have many months left before we even can think about actually moving but we're making progress!

Now, to the not-so-exciting news, Elena is having surgery at the end of the month.  Ugh.  It's awful.  Being a parent can be really tough sometimes, but having to decide to put your daughter through a painful surgery where the results aren't even guaranteed, really ranks up there.  I would give anything to go through this for her.  The doctor will go into her groin and cut one of the three tendons that attach to her adductor muscle.  In theory, it's should ease the tension in her left hip (that is likely causing her hip to dislocate) but the doctor can't give us a guarantee that it will do anything.  It is really just a shot at slowing down the dislocation in her hip.  Barring a miracle (which we will CERTAINLY be praying for), Elena will have to have the most horrible, no good, awful surgery in a few years when she's older.  We left the meeting with the surgeon pretty discouraged.  We agreed though that we have to give Elena every chance we can to keep her hip functional and without pain.  My poor baby.

Needless to say, we'll be needing some prayers over the next couple weeks.  Say a few especially for her little hip.

Monday, September 23, 2013

Our Picasso

We had the privilege of attending the annual Jackson Center Gala on Friday night.  It's their annual fundraiser and a really fun event.  It was even more special to attend a fundraiser that directly benefits Elena and our family personally.  It was quite emotional for us, even though we've only been there a short time.  I know I've mentioned it before, but this truly is a place where miracles happen every day.  We are so grateful to be part of it.

During the gala, they called all the parents up to be recognized.  We were all presented with a beautiful painting that our little ones painted.  I'm pretty sure I went into the "ugly cry" in front of hundreds of people.  This little painting means so much to us.  I know we'll cherish it forever.  We're so proud of what our Elena is achieving every day and the little personality that continues to emerge.  We're so happy to have found a place that loves our girl as much as we do and is always pushing her to achieve.

Here's the work of our little Picasso.  It's a priceless Elena original!:

On a different note, Elena has been sporting a new piece of equipment.  It's called a TLSO and don't ask me what that stands for!  It's basically a plastic corset that helps her with her trunk control so she can focus on holding her head up when working on sitting.  Trying to manage her trunk and her head proves difficult for her, so having to only focus on one has helped her tremendously.  It's super awkward looking and a pain to put on, but we've been pleased with how well she's tolerating it.  I mean I know how cranky I get with Spanx on, so I can't imagine how awful this thing is!   :)

Here is a picture of her in it:

And a video of her sitting watching her favorite songs:

Tuesday, September 3, 2013

An Update

My grateful attitude of late has been serving me well.  Each day I've been waking up feeling extraordinarily blessed.  Sure, I still have plenty of "wants", but I truly have been focusing on what I do have and it never fails to make me smile.  I've been lacking on my posts this month but it's mainly due to the sheer chaos of our weeks are and perhaps that I don't have as much venting to do with my grateful heart. So, sitting here in the Mooresville Starbucks, I thought I'd give you the run-down.

Elena had a great week last week at the Jackson Center.  She made it both days with a significantly less amount of tears.  We are LOVING the people there.  I have learned an incredible amount already from chatting with the staff and the other Moms.  Not only is it going to be a great workout for Elena, it's been such a support to me in just the few weeks we've been there.  It's an amazing place, where real miracles happen.  It's such a blessing to watch as kids take their very first steps, overcome enormous physical obstacles, smile at each other and enjoy themselves at a place where people actually understand them.  We're so, so happy to be part of it.

And as if on cue, just as we take a tick up in one area, we face another very serious issue that sets us back.  Elena's left hip has worsened since her last x-ray 6 months ago.  Hip problems plague kids with CP and unfortunately for us, Elena's little hip is already beginning to dislocate.  Her doctor recommended a surgery to see if it would help slow down the problem.  Unfortunately, once their hips begin to dislocate, there's really no stopping it.  It's more managing and slowing down the problem, not fixing it.  We're facing some tough decisions, that as a parent, are excruciatingly difficult to make.  We would appreciate prayers for not only her hip, but for us as we will undoubtedly struggle to make the best decision for our sweet girl.

On a happier note, we are excited to be making a trip to Cincinnati Children's hospital later this month, for Elena to attend a CP clinic there.  A CP clinic, is basically one HUGE doctors' appointment with all the specialists who collaborate on Elena's care together.  The reason we are going all the way to Cincinnati Children's as opposed to Riley is just because at Riley, they don't collaborate.  We really want to get a second opinion on everything we're doing for Elena and see if there are any other ideas for her issues that she still struggles with.  We're definitely looking forward to some fresh perspective!

Elena's been working really hard on her head control and her sitting.  She had a great day in PT last week where she sat and watching her "BINGO" for 3 minutes!  Yay Elena!

We had a great Labor Day weekend.  Low key for once!  We did go down to my parent's one day for a swim, which Elena loved!  Her legs were kicking in the water like crazy.  She's definitely our little water bug!

As always, thank you for all your prayers.  This girl is one special little lady :)

Wednesday, August 14, 2013

A Grateful Heart

One day last week I got my daily devotional via email per usual, it has really stuck with me.  It was a story about a woman complaining about all the troubles in her life to God.  She decided to take a different approach instead, praising God for all her blessings.  Quite frankly, I don't really remember how it all turned out for her but her approach has remained on my mind.

I've been walking through the past few days with a heart of gratitude.  I'm taking a hiatus from my prayers being consumed by frantic 'needs' or requests, but only by praise.  It almost certainly leaves me in tears each time.  But they are happy tears.  It is so hard to believe that after everything we've been through, our blessings are honestly so abundant.  It can be so tempting to constantly ask God for what I want but when I consider everything that I already have, it can all seem so little.

Now, I'm sure I'll be slipping in a "God, if you could just....", but the last few days my heart feels so much more full when I'm not emphasizing my problems to God.  Plus, maybe He'll appreciate my shorter request list and be more inclined to answer them :) I'm certain that's not how He works, but that's the human in me!

Today I'm unbelievable grateful for this sweet spirit and beautiful baby girl.  She has enriched our lives incredibly in just two years.  She endures far more than I could ever imagine, but is almost always happy.  For that, I am so, so grateful.

Friday, August 9, 2013

First Week Down

We made it to Friday....barely.

To say Elena and I are exhausted is an understatement.  It has been an incredibly long week but we made it.  You better believe Elena and I have spent an entire hour this morning doing nothing but simply cuddling, kissing and hugging on the couch.  Our entire week has been go, go, go so we have thoroughly enjoyed our time together this morning.  She still has another therapy in an hour and our afternoon is packed with a trip downtown to pick up some things up at the office and an appointment with our architect.  Soooo, this break is short-lived.

Elena was a champ this week.  I swear we must be the luckiest parents on the planet.  We put Elena through so much and yet, she always goes with the flow.  Tuesday was our first day at the Jackson Center.  I was in a frenzy to get out of the house on time.  The 40 minute drive was easy.  Handing my baby off to practically strangers, was not.  I could hear Elena's protests (hysterics, rather) from the waiting room.  I chitchatted with the other Moms for a bit before deciding I couldn't handle listening to her cry for the entire three hours.  The Moms all assured me their children did the same for the first few weeks, but I hustled off to sit at Starbucks for an hour.  She was quiet when I came back, which gave me a bit of assurance.  The report at the end of the first day was mixed.  She did cry, a lot.  But, they said she relented and participated in a majority of the therapies.  I think the scariest part for her is being handled by a bunch of people she doesn't know.  In my mind, that would be incredibly scary too, especially considering she relies on the sound of their voice and their touch.  Poor baby.  We raced home for a quick nap before another therapy later that afternoon.

Thursday was better, well and worse.  She cried harder, sooner when I handed her over.  So, I immediately darted out of the door and off to Starbucks.  Again, she was quiet when I came back.  They said she cried for about 30 minutes pretty hard then did really well with the therapies they put her through.  We again raced home for a nap before an appointment with her Vision Teacher.

All in all, I can't believe how well she did for her first week.  She easily could have cried for the entire three hours.  She easily could have cried through the two additional therapies I put her through in the afternoons.  But, per usual she adjusted.  She's two...not many two year olds can last through three hours of anything, let alone a rigorous work out and tasks that are incredibly difficult for her.  So, I'm proud of my little gal this week.  We made it, no doubt with the help of your prayers, emails and texts!  Thank you!

And next week....her first day of her other "school"...Mother's Day Out!

Monday, August 5, 2013

Goodbye Summer!

Last week marked the unofficial end to our summer.  We seriously enjoyed our last week of practically any free time.  Elena didn't have therapy at all last Tuesday, Thursday and Friday so we lived it up!  On Tuesday, Gramma came up and played with Laney while I got to run all the errands I had been stocking up.  Thursday, we went down to Gramma's with my cousin and her two girls to swim and have lunch.  Elena has really enjoyed all her pool time this summer!  Friday, Gramma, Elena and I went to the Indiana State Museum to check out the Abraham Lincoln exhibit and had lunch on their terrace overlooking the canal.  It was such a fun week!  I wasn't stressed about napping and schedules...what a reprieve!

But this week, so it begins.  Tomorrow will be an early morning as we head down to Elena's new therapy in Mooresville.  I'm not sure how things will go...for her or me, so prayers this week will be much appreciated.  August is going to be a whirlwind of a month.  She'll be in therapy 11 hours a week and for whatever reason, she has at least one doctor appointment a week this month.  So, needless to say, we'll be girls on the go!

Elena's been enjoying another nice little bump from the Botox the last couple weeks.  She's been able to use her arms a little more, which is so encouraging.  It's another reminder to us that she really can comprehend what we are asking of her, it's just so hard for her little body to communicate that she understands.  We're praying that the Botox continues to work as well as it has these last couple weeks.

I'll leave you with a little video from last week.  Elena is borrowing a "switch" from a family we met here in the neighborhood.  Their son will be in Elena's class at the Jackson Center.  A switch is basically a button that you plug into an adapted toy.  When Elena pushes the big button, it makes the toy turn on, teaching her cause and effect.  We tried the switch for the first time with her in therapy last week, and she got the hang of it very quickly!  I've never seen her be able to use her arms that much at once...it was so exciting for me to see.

Thanks for all the prayers this week!  I'll let you know how everything goes!

Thursday, July 25, 2013

Birthday Botox

Last week was my big 29th birthday.  So, I packed up the car drove to the doctor for some much needed Botox.....for Elena!  Though, teetering on the edge of my 30's has me finding a few more grays and another wrinkle or two!

But really, on my birthday last week, Elena had another round of Botox injected into her inner thighs, hamstrings and triceps.  As usual, it was painful for both Elena and Mom and Dad.  But, she's had a great week in therapy no doubt attributed to the Botox.  Keep praying that this round of Botox will continue to produce good boosts in progress.

Last weekend, we had a mini-getaway to French Lick for a family reunion.  Elena was such a champ.  We spent some time in the pool, which she absolutely loves.  She stayed up with all of us, enjoying a ragtime band, on the veranda of the hotel until nearly 10pm.  She loved the music!  And best of all, she enjoyed a queen size bed all to herself!  She's getting much too big to sleep comfortably in a pack n' play, so we nestled her into the bed and she did great.  It reminds me that my little peanut is no longer a baby!

We're enjoying our last two weeks of "summer" before Elena begins at the Jackson Center.  As the date approaches, I'm starting to get very apprehensive about it.  I'm not just nervous about doubling the amount of rigorous therapy Elena will be receiving on a weekly basis.  It's lots of things.  The first few sessions I anticipate will be miserable, as Elena will have to adjust to strangers pushing her through tough physical activities for three hours.  I'm not sure I will be able to even watch.  I'm nervous about pushing her too hard.  I'm anxious about our new weekly schedule, and if we'll have time for anything else.  This is going to be a big step and huge adjustment for Elena and me.  Your prayers over the next couple weeks will certainly be appreciated.  I know I'll be praying my way that first week.

I'll leave you on a higher note with a sneak peek of Elena's two year pictures.  Our dear friend and reliable photographer, Sam, knocked it out of the park again.  We've only seen one picture and it immediately made Chad and me giggle.  It captures exactly our precious Elena.....our happy, easy-going, full of smiles, Elena.

Sunday, July 14, 2013


We've been taking quite a few videos of Elena the last couple months.  I'm trying to do a better job of capturing some of her therapy-based moments so that *hopefully* this time next year, we can giggle about about all the progress she's made!  

The first was from back in June when we were testing out a gait trainer for Elena.  It was her first time being upright like that and able to move her legs in a stepping motion.  She really did a great job, taking a few steps with her right, but like everything that left side is tough for her to control.  Still, it was so precious to see how proud she was of herself after taking a step!  

This next one, is from the other day when Elena and I were working on some vision and touching exercises.  I put this toy in her hand her little arm just started shaking it!  We've really been pushing her to learn specific commands.  We get so excited when we observe her understanding a command and actually is able to act on it.  It was even better when she started to try and put the toy in her mouth!  Considering how orally averse she is to pretty much anything, this is great!

This last one, is from the same day working on sitting in one of her therapy sessions.  She is just so darn close!  Elena has high muscle tone in her extremities and low tone in her neck and trunk so sitting for her is the ultimate balancing act.  We treat her high tone with Botox; if only there were a way to take the tone out of her extremities and put it into her trunk!   Keep praying she accomplishes this goal soon...it's soooo important!

I'm just now getting around to uploading pictures from her birthday party...so I hope to share those with you later this week.  Thanks for all your continued prayers and love for our little sweet pea!

Tuesday, July 9, 2013

She's T-W-O!

Good Lord, how is my baby TWO?  I know every parent says that, but honestly I have a hard time believing that my sweet Elena is two.

Two years ago I was soooo over being pregnant ready to meet my little boy or girl.

Two years ago the doctor announced "It's a GIRL!"

Two years ago I laid my eyes upon the sweetest little face I had ever seen.

Two years ago my life changed forever.

Elena came into our lives and made us feel a love you can never describe.  She has made my heart grow to the size of Texas with love, compassion and tenderness.  Our lives have become more chaotic but we wouldn't change it for the world.  Her smile melts my heart and her giggle is contagious.  She is the best cuddle bug and never tires of my excessive hugs and kisses.  My Elena is the sweetest soul.  I can't imagine my life without her.  I became Elena Catherine's Mommy two years ago and there's been no greater moment in my life.

For Elena, each birthday truly is a celebration of her life, a life that was spared for a greater purpose.  Each birthday is an incredible blessing to us.

Happy, happy birthday my darling, my sweet, my precious, Elena!  We love you more than could ever be put into words.

Monday, July 8, 2013

Santa Barbara

Boy, am I backed up on blogging.  I feel like I have about five posts I need to publish!

I'll start with our trip a few weeks ago to Santa Barbara, California.  Each year Chad's company rewards those on their sales team who exceed their goals, with a fabulous trip.  Chad and I went out for a few days and came back wondering why exactly we live in Indiana!  I mean the Midwest is great and all, but I'm pretty sure I found my little piece of heaven.  It's a beautiful part of the country with the most ideal weather.  I would assume that's why real estate costs what it does out there!

Anyway, we enjoyed laying by the pool, amazing food and the great people that Chad works with.  Laney was great for my Mom and Dad, which helped us relax all the more.
 Chad's ugly catch

 I hate running but I'm pretty sure I would run this path every day!

 Part of the crew on the last night

 We're soooooo Hollywood!

Some more of our friends, you know Sammy, Dean, Frank and Marilyn.

Thursday, June 20, 2013

An Update on Laney

It's been a little awhile since I posted prayer requests and an update on how our little Elena is doing.  Summer is flying by.  I can hardly believe her second birthday is just a couple weeks away!  I feel like I just finished planning her first birthday!

We're looking forward to having a therapy free day each week in July.  Her Mother's Day Out program is out for the summer and she doesn't begin her new therapy at the Jackson Center until early August.  We plan on spending some time at the pool, the zoo and maybe some shopping with Gramma :).  It will be so fun to not be planning every single day around nap schedules and therapy! We can't wait!

While Elena is doing well, Mom and Dad admittedly have been a little frustrated.  It has felt like we've been at a plateau for a few months now.  We're anxious to see a bump in progress.  She is sooo close to sitting, but just can't make the leap.  She still struggles with keeping her little head up and maintaining her trunk control.  She can sit typically for 10-20 seconds before she ends up tipping over.  This is a HUGE, HUGE, HUGE milestone for her and we're just so anxious for her achieve it.  I know it isn't our timing but it feels like we've been on the cusp with this for months.  Bless her heart, it is just so difficult for her.

As if sitting wasn't frustrating enough, eating is even more frustrating.  She isn't eating nearly the volume she was back in December.  Every time we sit for "bites", it's a battle.  She usually wins, as it's hard to wiggle a spoon in her mouth when it's clamped shut!  Some days are more encouraging than others, but it is SO slow.  We remain committed to her eating, but it's impossible sometimes to see the light at the end of the tunnel.

Sitting and eating are such big milestones for Elena to inch towards independence.  I can't explain how difficult is to be continually working on these tasks and to see minimal improvement.  If only we could will her to achieve these feats!  We would be so grateful for prayers for these two things.  I find myself saying a million little prayers throughout the day for her.  Sometimes our list feels so long that I can only mentally focus on these two things.

Our days are usually frenzied and sometimes very long, but our girl is still so content.  She provides me with infinite smiles and giggles, which are so darn cute with all her new teeth!

As always, thank you for your continued love and support of our family!  No matter how much time goes by, I still tear up when people tell me they still pray for our girl.  Our journey can be so daunting sometimes, but it is so, so comforting to know God still hears prayers every day for Elena's continual healing.  So thank you.

Prayer Requests:

-That Elena would SIT!!
-Improvement in eating
-Improvement in Elena's muscle tightness/weakness
-Improved vision
-That we would see an increase in her ability to move her arms
-That Chad and I would continue to make the right decisions for Elena's care

Last but not least...we promised the sweet Shaw family that we would post a picture of the adorable outfit they sent Elena this winter!  She didn't cooperate too well when trying to take a picture but let me tell you she rocked it and was so cute in it!!  Thanks for thinking of us!

Monday, June 17, 2013

Martha's Vineyard

You may remember me blogging about a Ronald McDonald House fundraiser  back in November.  During a silent auction, we bid on a week's stay at a house on Martha's Vineyard.  This past week we traveled to the East Coast for a few days with our friends the Ertels, the DeMoss', Kyle and my brother and sister in-law!

We had so much fun!  Our house was on 22 acres in the middle of the island.  It was a perfect setup.  We enjoyed bonfires, bocce ball and whiffle ball games.  During the days we explored each of the towns on the island, definitely getting our fill of crab cakes, lobstah rolls and chowdah!

It was a great trip with great friends!

Pulling into the harbor

 The Gents:  Ev, Aaron, Chad, Andy and Kyle
 The Ladies:  Amy, Alisha, Lindsay and me

 Taking in the sights!

 Kyle enjoying some attention from us ladies :)

Sunday, June 16, 2013

Happy Father's Day!

I wanted to give my honey a little recognition today on the blog.  He generally doesn't enjoy any kind of public acknowledgement of himself, it makes him really uncomfortable.  He is a fly under the radar kind of guy.  But, just this once I want to brag on him...just a little :)

Our anniversary is coming up a little later this summer.  I once heard someone say that your wedding is only the beginning.  It's the beginning of a lifetime of ups and downs, joys and sorrows.  I knew on my wedding day that I was marrying my best friend, someone I could always depend on and who always (well, mostly) laughed at my jokes.  It's funny though, I knew all that but it has really been special to see all of what I "knew", be put into action.  I, without a doubt, believe that God put Chad in my life because He knew that Chad would be the perfect person for me to walk through life with.

Chad is the glue to our family.  He keeps us grounded, when I'm overly emotional.  He always has some ridiculously positive quote to reassure me when I'm feeling blue.  He can make Elena and me laugh until our cheeks hurt.  He is the strength to my weaknesses.  He works so incredibly hard at his job to provide so that I can continue to stay home and work with Elena.  For Chad, our family always, always comes first.

And to Elena.  Gosh, is he the best Dad.  I'll never forget seeing him the first time he held her when she was born.  I feel like I saw his heart change before my very eyes.  It is such a joy to me when I see them together.  He is the definition of a hands-on Dad, taking an active role in every aspect of her care.  I often have to remind him that she is up 30 minutes past her bedtime, just because Daddy wants to hold her.  Seeing how much he loves her makes my heart burst.

He understands when I need a break or am tired and takes over without hesitation.  I am so thankful to have a loving, caring, understanding partner in all of this.  I cannot even imagine having to walk this journey without him.  And Elena just may be the luckiest little girl in the world to have a Daddy who loves her to a million pieces.

We love you more than words can say Chaddy.  Happy Father's Day to a very deserving Father!  You're the best!