A whole new world

My occupation is an RN. Currently, I work as a course instructor at a school of nursing.  My job is to educate future nurses.  I spend hours preparing objectives, lectures, exams, quizzes and teaching on the clinical unit.

I admit that I feel guilty that I devote so many hours of the day educating others when I have a child at home in need of learning a basic function--sight.

I am concerned when I send her off to school that she will be learning in an atmosphere and a way that CVI children need to learn.

I have to somehow learn to let go and entrust other people, other professionals, to do their job.

But do they really know about CVI and all that it entails?   Are they good enough for my child?   I believe every parent feels this way regardless of the situation.

I do understand how crucial these early years are in the development of her vision. It can improve.  But how?

Traditional methods used for visually impaired children to learn do not work for children with cortical visual impairment.  The educators need to realize this and be able...no, willing...to adapt her learning appropriately.  So my goal is to find that way. I am in search.

Bridging into Phase III on the CVI Range is a miraculous happening for my sweet Olivia.  But the road through phase 3 seems to be a very complicated one. One that even the experts in the field don't know how to conquer.  

So I accept that challenge. I vow to find a way.  My goal is for Olivia to reach a 10 on the CVI range.  A 10 means that she functions as a child with no visual impairment would function.  Why not? Why not attempt to reach for 10?  

Remembering back to our NICU days about a week after Olivia was born, I remember one of the neonatologist saying to us, "Reach for the stars.  If you miss, you have lost nothing."  This became one of the most influential statements of the week.  This became our approach to Olivia and to her future.  

So I might have a Masters in Nursing with a focus in nursing education, but I feel like I am back in kindergarten, where Olivia is.  I am learning letters, numbers, shapes in a whole new way.  I am also learning about CVI.  Something just a few years ago I had never heard of. 

It is a whole new world.  

...our adventure continues 

Olivia's mom

"Hope"ful

"Hope" she smiles...

The word hope was a word I used often in my life previous to the birth of my daughter:

I hope...we win the game.

I hope...I pass my test.

I hope...I make a lot of money.

"Hope" now has an entirely different meaning.  My outlook has changed since my first 30 years.  And it all changed when I heard those words, "Take her home and hope she smiles."

Hope has given me the drive to seek out interventions and modalities that will improve Olivia's life.  It has given us strength when the road that we are on proves to be challenging and frustrating.  It has secured my belief in the blessings of God.  

Hope reminds me that no one is perfect, we all have challenges that we face.  I am proud to be helping Olivia meet those challenges head on.  Hope drives me to find a way. 

Hope doesn't come without disappointments.  I hope for her to see, talk, read and write like all the other kids.  I hope for her to make lasting friendships.  Hope-fully these accomplishments will just take a little more time.  

Lastly, I need to mention what drives hope.  What is the fuel that gives us hope?  Only one word...LOVE

...our adventure continues

"Hope"ful  mom 

Coach mom

The question that I've been asking myself over the past week is, "Where do I start?"

Usually the best place to start is at the beginning, but historically I do not follow the path that is paved.    So in an attempt to answer questions that I am frequently asked by other parents of children with CVI is, I will focus on the present with the past sprinkled in.

In August of 2007, we didn't know what Olivia's future held.  We heard news from the NICU team at West Penn Hospital that we knew would change our life forever.  After suffering seizures and apnea 12 hours after birth, she was life-flighted to Pittsburgh.  Her diagnosis was massive stroke in utero, cause undetermined.  What did this mean for her, her development and her quality of life?  We had so many unanswered questions.  As a nurse myself, I struggled with  understanding what this meant for a newborn.  I knew in that moment that I was not acting as a nurse, but as a mother.  A mother?  I had only been a mother for 24 hours and I didn't know what I was supposed to do.

SO the present...Where is Olivia now?

With the help of Early Intervention; Occupational, Physical, Speech, Vision therapies, follow up appointments; and a new appreciation for special needs children we were on our way.
She is currently in Phase III of the CVI Range and I know all of the above, plus other things that I will be mentioning in future blog posts, have been instrumental in getting us to this point.

Her main diagnosis resulting from the stroke: Cortical Visual Impairment (CVI).  Luckily we were connected with Dr. Christine Roman-Lantzy from the Pediatric View Program when Olivia was only a few days old.  She has taught us that the focus should be on her vision, because it CAN improve.  This statement gave us extreme hope and determination.

Olivia is in Kindergarten now and is a social butterfly.  She is extremely happy and energetic.  She can not only smile, but learned to walk, run, jump, ride a bike with training wheels, swim with a life jacket, horseback riding.  We have even taken her ice skating.  Our approach to her and her diagnosis is "Let's try it"  Sometimes it is a success and she surprises us beyond belief and sometimes it fails and we vow to try again at a later date.  I believe our nontraditional approach has led us to where we are now.
I am excited to share these stories with all of you.

But, we know that we still have a long way to go.  Especially with Olivia's vision and recognizing shapes, letters, numbers and hopefully one day be able to read and write.  Her language and developmental level are behind, but improving.  We know she can do it and I am blessed that I was chosen as the ultimate 'coach'.

...our adventure continues
"Coach" mom

Happy BIRTHday Olivia

"Take her home and hope she smiles"

That was the quote from the Neonatologist the day after our sweet Olivia was born.   Her diagnosis was intrauterine stroke with severe brain damage, cause undetermined.   This news on August 20, 2007 changed our life forever.

This is her journey, her adventure, that began 6 years ago.  I have learned a lot along the way.  I hope to share the ups and downs, the struggles and the accomplishments, the challenges and the surprises, in hopes that we might be able to help other families that struggle with hearing these same words.

Olivia is not just special, but amazing.  Her soul and spirit are like no one that I've ever met.  She is beautiful on the inside and out.   And I am blessed that I was chosen to be her mother, her provider, and her teacher through this adventure.

Did she smile?  YES!  And she hasn't stopped.

...our adventure continues

Olivia's mom