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!

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!

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.

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.

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.

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!

 

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.