Saturday, September 28, 2013

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