TBI

Latest Trip to Pittsburgh

July 22, 2014

Geez, it’s been two weeks since our last trip to Pittsburgh and I’m just now getting around to blogging about.  That should give you an idea how crazy it’s been!  In the last two weeks, we took the whole family to Pittsburgh and back, celebrated Elena’s birthday, had her birthday party, celebrated my 30th birthday and had my birthday party!  It’s been a whirlwind…and quite frankly I’m exhausted!

But as usual, we left Pittsburgh encouraged and excited.  It’s the most worthwhile 14 hour round trip car ride!  It helped that both kids did great in the car and in the hotel room.  Having a three year old and two month old sleep in one hotel room is not an easy feat, but amazingly all went pretty smoothly.

It is so easy for Chad and me to get wrapped up in Elena’s physical disabilities and become discouraged about her capabilities.  Her little body is so rigid and the simplest of tasks are so incredibly difficult for her.  We’ve known for a long time that her cognitive abilities are far greater than she can communicate, but it took this little trip to Dr. Roman for Chad and me to get that “aha moment”.

Elena faces huge challenges with her vision in addition to her aforementioned physical disabilities.  Because of Elena’s vision impairments, it is incredibly difficult for her to learn and take in her surroundings.  If you for one minute think about all the information you take in visually, especially as a young child, you can begin to see that Elena will have to learn about her surroundings in totally different ways.  She not only has that barrier but she can’t easily communicate either.  What Dr. Roman was able to conclude from our visit, is that Elena HAS the ability to learn.  And that she IS present-minded and understands probably far more than we give her credit for….she just can’t communicate that she does.  She reminded us that Elena was born with a perfectly healthy brain, but when it was damaged by her injury, certain parts sustained more damage than others….clearly her motor abilities.  She called it “splintering”.  So certain parts were damaged and others very well may be intact.  She believes that Elena’s memory and cognitive areas have great capabilities.

It’s all very technical and difficult to explain, so I won’t even try to describe our two hour session with her.  But, I do want to give you an example of how Dr. Roman could determine this.  She showed Elena very quickly a red pompom and told her what it was and waited until Elena looked at it.  She then did the same with a green slinky.  She stepped back about four feet.  Chad and I immediately looked at one another, both thinking that Dr. Roman was crazy because there was no way Elena could see that far.  She then asked Elena to look at the red pompom, which Elena quickly did!  And then repeated with the green slinky.  She even switched the objects around to different hands and Elena still looked at the specified object when asked!  Now, this may not seem like that big of a deal, but to us it was nothing short of miraculous.  Not only was Elena able to identify objects that were presented to her in a short amount of time, but she was able to do it from a distance and understand the verbal commands.

Dr. Roman was thrilled with Elena’s ability to comprehend and believes she has incredible potential.  Chad and I were so disappointed in ourselves that we get so discouraged with Elena because of her physical disabilities, it hadn’t even occurred to us to rejoice in her abilities.  Our hope was renewed.  Elena’s little body may continue to let her down, but she has such great potential with her mind.  And in many ways, that’s so much more meaningful to us.

Once again, we left Pittsburgh with our jaws on the floor.  Dr. Roman is so brilliant.  We feel so fortunate to have her.  She always provides us with a wealth of knowledge and a plan of action to help focus on what Elena can do, not always what she can’t do.  Just like anyone else, Elena has strengths and weaknesses.  Our little girl is in there and it’s our job to help her find her voice.  I just know that there’s so much in there that she’s dying to tell us!

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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