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.