TBI

Back to the ‘Burgh

November 13, 2013

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!

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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