Tuesday, August 26, 2014

When life gives you lemons...

When life gives you lemons... make lemonade, sell it and donate to the PCVI Society

7 years ago (tomorrow) we first met Dr. Christine Roman-Lantzy.  Who is Dr. Roman?  Well, if you live in the world of Cortical Visual Impairment, you know her to be a pioneer and an expert in her field.  She is world known from her research and work with children related to CVI.

Olivia was in the NICU at West Penn Hospital in Pittsburgh, PA after she was born when I first heard the name Dr. Roman.  Her husband, Dr. Alan Lantzy, was Olivia's neonatologist and mentioned that he wanted to have his wife see Olivia.  Due to the severity and the amount of brain damage that Olivia's MRI scans showed, it was likely that Olivia would have visual impairments, if not be completely (cortically) blind.  This means that her eyes are fine, but her brain is not.

A few days later, we were introduced to Dr. Roman.  At the time, I was unaware of this new world and didn't realize that we were in the presence of a celebrity.  Okay, okay... not a typical celebrity as we know it, but a celebrity of this new world that I found myself dropped in.

I remember the day like it was yesterday, August 27, 2007.   Dr. Roman assessed Olivia in the crib and her verbal reaction to each of her assessment areas were positive, not negatives like those I had heard the entire week prior.  This was my first moment of HOPE since Olivia was life-flighted to Pittsburgh.  Ironically this hope came today, my birthday, and it was the best gift anyone could have given me, a new mom.

We continued to visit Dr. Roman and Dr. Lantzy at the Pediatric View Program for follow up visits every few months for the first year.  As each visit passed, Olivia's CVI Range scores improved.  So, today August 26, 2014 we travel to Pittsburgh again to visit with Dr. Roman.  We always wait to hear those positive reactions like we heard when Olivia's future seemed so questionable.  We try to learn and understand more about CVI and the interventions used.  As parents, we are our child's #1 advocates.  We have the responsibility to be their voice, show our passion, and we support our children in all that they do.  We are now turning that passion in to power by supporting those that make CVI their profession.

When I heard about the newly forming PCVI Society, I knew there was something that I could do.  I understood the importance of forming a group where others shared a common goal, better yet shared our passion.  What better way to be an advocate than to support those professionals that spend hours researching, studying, writing, and assessing children with CVI.

My goal was to raise $500 by August 27th, the day we first met Dr. Roman.  This day 7 years ago HOPE entered our room and touched Olivia.  She touched our hearts and we knew that utilizing her knowledge, we could help Olivia reach her goals.  Christine Roman, PhD  and her husband, Alan Lantzy, MD are both sitting board members on the PCVI Society.

The Pediatric Cortical Visual Impairment Society will:
     -Promote optimal care for visual loss of affected patients
     -Promote research in PCVI
     -Develop best practice guidelines
     -Promote interdisciplinary learning
     -Disseminate information more readily and accurately
     -Advocate for patients with CVI, regarding resource allocation

PCVI Society meeting minutes
As you can see from the minutes, there needs to be a reserve of $12,000 before this can go operational.  So, this is our mission.  To raise funds to support this newly developed organization.

We took the 'sour' situation that we were handed and through Olivia's love and Dr Roman's knowledge, we made it so much sweeter.  That is what we did with the lemons that we were given.  We made sweet lemonade, sold it and we are well past our goal.

Our current grand total: $800!!!!! 

Please become a member and supporter of PCVI Society.  It could mean a better future for our children.  A very BIG thank you to those that have donated.  It means more than you know!

To buy a "virtual" lemonade or make a donation: Team Olivia PCVIS fundraiser


...our sweet adventure continues
Olivia's "thirsty" mom