Friday, November 1, 2013

Team Olivia

Today, as we make the 4 1/2 hour trip to Cincinnati Children's Hospital, I reflect back upon all of the people we have encountered on this adventure.

The team of neonatologists in the NICU: Dr. Alan Lantzy, Dr. Giovanni Laneri, and Dr. Ruby Varughese; that delivered devastating news to us.  They do their job well, even when the diagnostics or outcomes are not favorable.

Mark, the NICU nurse, that tried to decipher this information for us and put things into perspective.  He saw my family at its most vulnerable.  He educated, comforted, and cared for us all, not just Olivia.  As a nurse myself, I will always remember his nursing skills and therapeutic communication as remarkable.

Bob, the lactation consultant that helped me provide nutrition to Olivia.  I felt this was the one thing that was in my control, one thing that I could do to help her, and he made sure I did not fail.

Christine Roman-Lantzy PhD, author of Cortical Visual Impairment: An Approach to Assessment and Intervention.  She gave us our first piece of positive news that Olivia had some vision and that it can improve with interventions.  This happened to be on my birthday, one week after Olivia was born.  What a great present she gave me that day.

Dr. Robert Cicco, the pediatrician that gave us hope and put us on a mission. He showed us the path to success with his words.  He encouraged us to set our goals high for Olivia and if we come up short and do not reach those goals, we have lost nothing.  In 2012 he was named Pediatrician of the Year by the American Academy of Pediatrics, Pennsylvania Chapter.  I know why he earned this title.  

The staff at West Penn Hospital, that scheduled follow-up appointments, home health, and early intervention.  I am thankful that we didn't have to think about these things.

Jennifer Orlando, the early intervention developmentalist that came into our home once a week for three years teaching us how to visually stimulate Olivia and open up her world.  She evaluated her needs and ability to reach her milestones.  Her suggestions were invaluable.  

The team at Easter Seals: physical, occupational, and speech therapists.  Too many people to name over 6 years (and I didn't want to accidentally forget anyone).  They have been a blessing, not only with their therapies, but for their continued focus and support.  

The Pediatric View Program.  I would be lost without their knowledge, commitment and research with CVI.

The staff (friends and former co-workers) at Weirton Medical Center labor and delivery, for caring for me during a difficult delivery.  The nursery nurses that assessed Olivia and found she was having seizure activity.  And my friends that had to deliver this news to me.  I'm sure this was very difficult for them.  

Dr. Lisa Noble, that gave the order to transfer Olivia to a tertiary care center that could diagnose and treat the cause of the seizure activity.  Dr Noble's nurse, Kristen, and the office staff that has followed us on this adventure and have provided care with compassion.  They always follow through with my any requests I have as a mommy in need.  

Dr. Joseph Sobek, that focused on exercises for the brain that would develop her vision.  These crossover exercises train the brain to work together (right and left sides) and make new pathways.

The teachers and staff at the School of Bright Promise where Olivia attended 3 years of preschool.  Miss Kitty and Merrie-Lynn are angels and were so very special to Olivia during her early school years.  This school is a hidden treasure in the Ohio Valley.  

Nikki, Olivia's TVI and Miss Debbie, her one-on-one paraprofessional, that are committed to Olivia's goals and learning outcomes in Kindergarden.  They are open to my suggestions and it is appreciated.  Bill Beattie, Edison local school district Superintendent, that has guided us through this process the past 3 years.  He is always putting our special kids and their assistive technology first and it doesn't go unappreciated. 

I want to thank Ruth Ann King for connecting me with Judith Millman from the Jewish Guild for the Blind.  She moderates a weekly teleconference call with parents with children with CVI from around the country.  The parents on the call have been so helpful sharing their stories, perspective, insights and successful interventions. 

Internet resources and blogs that show us we are not alone on this adventure.

In addition to the above mentioned, "Team Olivia" has also included: Help Me Grow-Early Intervention, Home Health, Pediatric Opthamologist, Pediatric Neurologist, and a Speech-Language Pathologist.  

Most importantly,  I want thank our family and friends that stood by our sides through this process.  It's a difficult road to travel alone.  They have been there through our darkest nights and our brightest days.  I am grateful for their love and continued support.

And last, but not least, I want to personally thank my wonderful husband for continuing to stand by my side and meeting new challenges head-on.  I could not ask for a better husband or father to my children.  God knew what he was doing when he picked Olivia's daddy.  As she so often says, you are perfect.

All of these people have had an impact on our lives and on Olivia's life.  I am grateful for the people I have met, the connections I have made and the people I have yet to discover on this adventure.  Godspeed to all of you!

...our adventure continues
Olivia's mom, team captain