TBI

Our Trip to Pittsburgh

March 14, 2013

Thank you to all of you who had been praying for us while we traveled to Pittsburgh to see a vision specialist.  We had a long, but well worth-it, trip!  For the first time EVER, we left a doctor office feeling inspired, encouraged and excited for our Elena.

As a result of Elena’s brain injury, she suffers from what is called a Cortical Visual Impairment (CVI).  The structure of her eyes is all intact and healthy, but the part of her brain that interprets what her eyes see is damaged.  Therefore, Elena is technically blind in the sense that she sees but has no idea what she is seeing.  This doctor likened it to looking through a kaleidoscope.  Elena’s world is a mix of indistinguishable colors, shapes and patterns that she is unable to decipher.  Fortunately, with lots of vision therapy, CVI can improve and Elena can learn to understand what she sees.

We’ve known for some time that Elena was suffering from CVI, though no doctor actually confirmed this for us until our trip to Pittsburgh.  Dr. Christine Roman is one of the leading researchers and specialists in the country on CVI.  She was amazing.  These kids are her passion and we got the sense that she has a vested interest in helping all her patients with CVI learn to see.  She spent two hours with us, explaining what was happening with Elena, explaining CVI and testing Elena to see where she fell on the spectrum.  Elena falls into Phase II (there are three phases, one being the most severe impairment, three being closest to “normal”).  This was a huge encouragement as we expected her to still be in Phase I.  We were amazed at what Dr. Roman got Elena to look and sustain her gaze upon.  We had never seen Elena look at ANYTHING for longer than 2-3 seconds and she had her staring at objects!  It was fascinating to watch.

Dr. Roman was really impressed with Elena’s desire to be challenged and saw in the short time we were there how hard she works.  We, of course, knew that but it made for a proud Momma to hear a professional confirm that.  She also kept commenting on Elena’s disposition.  The only time she fussed during those two hours was when we took away something she had been looking at…meaning she wanted MORE!

We are recharged and eager to begin integrating new tasks and targets into our every day routines to help Elena see.  Dr. Roman shared that she felt Elena was going to make really great progress.  When we are so used to hearing doctor after doctor tell us what Elena WON’T be able to do, this was a welcome reprieve.  Dr. Roman gave us options, encouragement to persevere when other doctors had told us to “wait and see”.  We will not “wait and see” with Elena.  We will continue to work hard, challenge her and give our precious girl every opportunity to reach her full potential, whatever that may be.

Here’s a few pictures of our girl of late!

Here she is at “school” sitting like a big girl!

 Our little traveler!

 Here she is with her cute hat courtesy of Fishies of Hope!

Riding horsey at the Ledfords (I have a feeling one of these may be in her Easter basket!)

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This is Elena. Our Light. You can see all the goodness and joy that shines from those deep blue eyes. She loves sneezes, yawns, industrial toilet flushes, automatic paper towel dispensers and The Star Spangled Banner. Music is her everything, specifically Moana, Frozen (really all Disney), Queen & Taylor Swift. Nothing makes her squeal quite like swimming, fast boat rides and her two brothers in trouble. In addition to her megawatt smile, Elena reminds us to cherish the smallest of victories, to live in the present, and to daily dwell in a posture of gratitude for every breath and every blessing.  

More About Our Story

I’m Emmalee, an ordinary gal born and raised in the Heartland. Wife to Chad, and Mom to Elena, Calvin & Turner, I spend most my days ridin’ dirty (literally so much trash) in my minivan carting kids to and fro. When I’m not being a Momager, I excel at self-care, cooking gourmet meals my kids won’t eat and deep-diving all the feelings. Most days, my attitude is gratitude, just taking life one step at a time.

Emmalee & Elena

Meet The Gals