Voting begins

Day 1 of voting has begun.  Bring Lily LightAide back to Ohio and reunite her with her friend, Olivia.

Please vote daily.  Winner to be announced December 16th

http://www.wonderbaby.org/which-family-will-keep-lily-lightaide

Thank you all for taking the time to learn about CVI and vote for our sweet Olivia.

GO TEAM OLIVIA! 

Lily departs Ohio

The time has come for Lily to return home.  We have enjoyed her stay with us.  Olivia and her team has worked very hard to utilize all of the LightAide's features to advance her education.  The visual stimulation that Lily provides encourages her to use her sense of vision.  Essentially, it makes the work more fun!  If I had to sum up what Lily has done for Olivia, it is: motivates & engages.  If we have a motivated and engaged child, the learning will follow.  The LightAide has literally brightened our days and increased our hope for the future.

Looking back on this experience we would like to thank those who chose Olivia to be a part of the Backpacking LightAide Program.  We are thrilled to be involved with anything that can be done to raise awareness, encourage participation, advance research, or educate others about Cortical Visual Impairment.  Understanding CVI can be challenging, but living with it is and adventure.   Again, we are grateful to the professionals and experts that dedicate their time and talents to our special children.  Anything that gives us hope for Olivia's future is priceless.

To reunite Lily & Olivia, there will be a special online vote starting December 9th-December 15th.  The website will be announced the morning of December 9th.  Each person will be allowed to vote once per day.  Bring Lily back to Ohio by Christmas!  Thanks in advance for your support.

...our adventure continues
Olivia's mom & dad


To learn more about the LightAide, please go to: http://www.perkins.org/store/lightaide

To learn more about the Backpaking LightAide Program and the 5 other families chosen for the program, go to: http://www.wonderbaby.org/articles/backpacking-lightaide-program

Lily travels with Olivia

Olivia and Lily have been very busy this past week.  They have been getting to know each other and Lily has been wonderful in sharing her vast knowledge with Olivia.  Lily has also been traveling around the Ohio Valley showing off all of her skills.  Here are some thoughts by those that have met and have been working with Lily LightAide.

You tube: http://youtu.be/ftNHCtKu11c

Miss Mary, OT

"The various features of the LightAide allow me to work with Olivia on visual perceptual concepts in a more engaging and fun way for her.  We have worked with concepts such as big versus small, same versus different, patterning, and matching.  It is also a great tool to help with learning shapes and letters because Olivia can now visualize these better with the use of the LightAide.  She is able to then trace the letters with her finger and then form that shape/letter with manipulatives like paper, pencil, etc.  Her visual attention was better on the LightAide compared to other desktop activities.  I think using the LightAide helped her focus for longer periods of time."

Miss Debbie, Paraprofessional

"My name is Debbie.  I am the paraprofessional who works one on one with Olivia.  I met Olivia a few times last year at her old school.  I wanted to get to know her and of course let her become acquainted with me.  In August we started our first school year together.  Olivia has such a love for everything she does!  She just lights up everyone who works with or near her.  Olivia tries so hard with learning the alphabet, numbers, and shapes.  There are times when Olivia can’t recognize the items and can become frustrated.  We just practice and continue the next day.  When I first sat down with Olivia and worked with Lily, I was amazed.  I was amazed at how well she sat and was attentive to the lights and activities!  Most of the time, the activities in school can’t hold Olivia’s attention for very long.  She will then become upset and discouraged and we will need to move on.  We haven’t’ had this problem with Lily.  Her attention and the ability to do the activities encourage Olivia to do well and stick with it!  We have had wonderful days with Lily at our school!  We also have another little boy in our class with CVI who also had the chance to work with Lily.  He too loved the activities and did amazing!  I am so glad we were able to experience this learning aide and what a great tool it is for any house or classroom."

Miss Nikki, TVI

"My name is Nikki Richardson; I have been working with Olivia for three years.  Olivia has always been a joy to work with: She is pleasant and always tries to do her best.  Olivia wants to learn and wants to have the correct answer when asked a question about what she is being taught.  Although there have been some difficulties, Olivia has made tremendous progress in all developmental and academic areas.  The one problem that has remains consistent for Olivia is the inability to maintain visual and cognitive attention for long periods of time.  Olivia has not shown much intrinsic interest in any assistive device or developmental toy. This was true until she was able to interact with “Lily”. Olivia is engaged like never before when she is using “Lily”.  It is amazing to watch as she enters the room and immediately sits to begin working with Lily to learn her shapes, colors, letters and numbers.  She is so excited to show us what she can do!  This sense of accomplishment is causing Olivia to feel successful and helping her to gain confidence in the area of academic achievement. This will only facilitate her love for learning, and provide a format in which she can do so successfully."

Visually Impaired (VI) Program   

    Jefferson County Educational Service Center Visually Impaired support program provides designed instruction to students whose visual impairment adversely affects their educational performance.  Teaching activities, including orientation, mobility instruction, and Braille instruction, focus on the acquisition of specific competencies from the Expanded Core Curriculum.  Specialized materials, technical assistance, technology support, assessment, acquisition and training in the use of assistive devices for the visually impaired are provided.  These enhance the students’ opportunities for academic success in an inclusive educational program.

For more information on the LightAide Backpacking program, please visit: http://www.wonderbaby.org/articles/backpacking-lightaide-program

For more information on the LightAide, please visit: http://www.perkins.org/store/lightaide/

…our adventure continues

Olivia’s mom

Olivia and Lily LightAide - Day 1

Lily has arrived safely on Olivia's doorstep a few days ago.  Her journey to this small rural town holds high hopes.   

Surprise #1

Getting started only took a few short minutes.  It's simple, easy and ready to roll.   

Surprise #2

I admit that I greatly underestimated what the LightAide has to offer.  I had preconceived notions that Lily would show Olivia colors, shapes, numbers, and letters…but there is so much more than meets the eye (no pun intended).  I was aware that Lily uses light to engage the learner, but I was taken back by the vibrant hues of colors displayed by the LED lights.  I was also surprised by the preset activities that were developed to teach the content of English language arts, mathematics, visual efficiency, components of the expanded core curriculum, and even games.  It is preloaded with a total of 65 activities that range from easy to complex. 

Surprise #3

Olivia has never watched television. For a 6 year old, we know that is something unusual.  Typical television that is geared toward young children is much too complex for her.  She is unable to process these shows.  The LightAide captured her attention and encouraged her to participate.  I can't explain how huge this is for her.  She can now enjoy a type of technology built with her in mind.  I am so grateful to the developers of the LightAide that have the goal to advance our special children. 

Surprise #3...the big one

Olivia has never truly had a toy that she has been attracted to enough to remember to play with.  When she came home from school the other day, the first thing that she did was run to the LightAide that is set up on our dining room table.    Olivia remembered?  Cognitively, this modality had such an impact on her that she remembered.  Wow, I have no words.  I possibly just witnessed a miracle!

In summary, Lily is simply described as a motivator.  We all need motivation in areas of our lives, whether it is to advance at work or to lead a healthy lifestyle.   The LightAide is an educational tool designed with Olivia and other children with CVI in mind to engage her to learn and advance her to the next level.  The attached video is only 6 minutes, but was actually a span of more than an hour.  We where able to capture her reaction and witnessed her being completely engaged.  In the video I have highlighted clips from the areas she really enjoyed and excelled at.  Other areas, like numbers and letters, she struggled with on her first day.  I am hoping to show some improvement with utilizing Lily these next 2 weeks.  It’s also important to understand that these clips were from the very first time we used the LightAide.  Her animated reactions melted my heart.  What an amazing friendship her and Lily have already made.

 

Thank you Philips, Perkins Products and Wonder Baby for allowing Lily come to our house to play.  I'm sure her time with us will be well spent.

For more information on the LightAide Backpacking program, please visit: http://www.wonderbaby.org/articles/backpacking-lightaide-program

For more information on the LightAide, please visit: http://www.perkins.org/store/lightaide/

…our adventure continues

Olivia’s mom

Livi meets Lily

Lily has arrived in Ohio!
We will have 2 weeks to experience all that the LightAide has to offer for our sweet Olivia.  I will be updating and uploading a video from our first day with Lily.  It is a video you don't want to miss!

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

Olivia's new friend...Lily.

We are thrilled to announce that Olivia has been chosen for an incredible opportunity!  Lily, the backpacking LightAide will be visiting our home for two weeks.  

"What's a LightAide™?

Lily LightAide is a new product from from Philips and Perkins Products.  It uses hundreds of bright and engaging lights to help learners with low vision, cognitive disabilities and other special needs.  The LightAide creates a variety of interactive displays of color that supports core learning goals and helps instill the building blocks of literacy and mathematical concepts."

Olivia's diagnosis of cortical visual impairment (CVI) makes her the perfect candidate to trial this product.   

Please visit: http://www.wonderbaby.org/articles/backpacking-lightaide-program

for more information on the LightAide.  

We will be posting videos, pictures and updated during Lily LightAide's visit with us.  Please continue to follow our adventure.

Olivia's glowing mom

WHY...not

Why did this happen?
Why my child?
Why me?

Why... 3 little letters, one huge question.

Why is a question that I initially asked myself, a question that can never be answered, and a question that I have blocked from entering my mind.  I have made the conscience decision to replace it with... Why not?

I wouldn't trust anyone else with my sweet Olivia
That is all I choose to say about- why

...our adventure continues
Olivia's grateful mom

The "safe zone"

Olivia is faced with many situations where she doesn't quite fit in.  She is unaware of certain things happening around her, but it pains me as he mother when I see it transpiring.  When I see other children looking at her with a strange look or running away from her because she is not like them, it hurts me.  Literally, my heart aches for her.  She sees these children running away as a game they are playing with her.  It is in these moments that I am glad she doesn't understand. 

I'm not sure how her peers respond to her at school, but I have high hopes that she is being accepted by them.  We all want our children to make long lasting friendships.  It's an important part of growing up to have a friend to share secrets with or to talk to about the cute boy in school.  A friend that will play pretend games, hide and seek, and tag.  How to interact with others and find common bonds are crucial to emotional and psychological development.  I pray that my sweet Olivia will one day experience all of these things because I realize they are essential to growing up and being a kid.  

I am relaxed when Olivia is in a safe  zone.  What is the "safe zone"?  A place where she can be herself without judgment.  For example, when she is around family and friends that know her and understand her limitations,  I see how free and energetic she becomes...so full of life.  It is safe for her to play and be herself.  Seeing kids run to her (instead of away from her) with open arms and yell her name when they see her coming because they are excited to see her, is so pleasing.  I admit that this is not only Olivia's safe zone, but mommy's safe zone.  It's safe for me to sit back, relax and enjoy these moments.  It's a time when I do not worry about the presumptions of other kids or adults.  This is where I wish we could be at all times. 

Olivia deserves the opportunity to be in this safe environment and not be segregated out, but I know that is not possible to control.  I think back to when she was a baby.  I knew that she was in a safe, nonjudgmental zone.  And even then, I realized that it might be only a matter of time before this would not be the case.   I made a conscience decision to enjoy this time.  Would she sit up, walk, or talk?  At the time, I didn't know the answers to these pressing questions.  What I did know was that as an infant, she wasn't supposed to.  She wasn't supposed to reach these developmental milestones yet and I found comfort in that time period.  For a short moment in time she was just like all the other babies.  I knew at some point as time passed by that it might not continue to be safe.  At any time, she might lag behind and I would have to come face to face with those demons that lurked right around the corner.  

This world is not safe for anyone.  Diseases, accidents, wars, devastation or destruction can find any one of us.  We can't hide.  What do we do?  Stand up, look it in the eye and say, "Bring it on".   We use the love and support of God, family and friends as our battle gear.  So, in the game of life, I am realistic enough to know that she will be out more than she will be safe.  But, it's better to play the game as best you can, than to never have played at all.

...our adventure continues

Olivia's unsafe mom

*Picture: Olivia is pictured with Zoe, her 'best friend' the past 3 years in preschool.  Olivia and Zoe were inseparable but now attend different schools.  I am sure that Olivia misses her dear friend, I know I do.

63,360 inches

Developmental milestones are the focus in the beginning months and years.  From early development when a baby tracks an object or reaches for a toy, to the later milestones of jumping, writing, or speaking in sentences.  These "mile"stones seem like a goal that is miles away and unobtainable.  Some refer to these as "inch"stones.  An inch versus a mile is a goal that can be less intimidating and one that is far more achievable.  If you add up the inches, they will eventually equal a mile.  So, it doesn't matter how you get there, or how long it takes you, as long as you get there.

Gross motor, fine motor, visual and speech delays are a cause for concern, yet expected when the initial prognosis is poor.  Even so, no one is prepared for the fact that their child will not be "the best" in everything that they do.  Every parent hopes and dreams for success and greatness from their children.  Little did I know that these small accomplishments would be equal to my child winning a gold medal at the Olympic games.  Finally hearing the words, "I wuv you mommy" was music to my ears.  Watching her walk across the room into my arms seemed like a miracle.  At the beginning of this journey, the doctors told us that both of these things might be fantasy, not reality.
 
Focusing on milestones can consume a parent of a special needs child.  Reading a pamphlet or researching the internet will guide a parent of a typical child, but there is no pamphlet for our special children.  Only a statement that "time will tell".   Even now, at our last well-child appointment, the questions from the Pediatrician only remind me of all of those things that Olivia is not doing.  I used to dwell on this, but now I am prepared to let it roll off my back, like water off of a duck.  Even with 6 years of practice, some things still stick like a fly on molasses. 

As a first time mother, I often wondered what it would be like to not constantly evaluate and assess every movement, every sound, every fault.  That feeling came with a bit of jealousy as other mothers were concerned with how to dress their child, while my concerns focused on would my child ever be able to dress herself.  My nightmare included the fact that Olivia might never be able to walk, talk or see.  I soon learned that Olivia was a special gift to me.  I was lucky to be chosen by God as a suitable caregiver.   I accepted the challenge and assume great responsibility for her future.

Focusing on milestones can be overwhelming, especially when your baby hasn't rolled over, sat up, or been able to bear weight "on time".  But what have they accomplished?  What milestones have they reached that the doctors once said they might never do.  These are the areas that we need to map out, inch by inch. 

...our adventure continues
Olivia's "inchworm" mom

Don't sweat the small stuff

It has been a journey of self discovery and reflection these past 6 years.  I have learned that days come and go despite the trials that we face.  I've learned that it is selfish to dwell on things that cannot be changed.  I've learned that my greatest gift is a child that deserves a positive, proactive mother.

I used to sweat the small stuff.  As a student, I worried about making good grades.  As a coach, I worried about my team winning the "big" game against our rivals.  As a nurse, I worried about picking up extra shifts to please co-workers.   As a woman, I worried about weight and physical appearance.  Why was I so concerned with things?   It amuses me now that I wasted so much "worry time" on such insignificant matters.  Don't get me wrong, I am not saying that good grades, winning, work cohesiveness and health is not important...(And those that know me, know about my competitive side)...  But, they are not critical to what matters most to me now.  They are not the focus on what currently drives me.
  
So what do I worry about?  Worries never leave a mother of a special needs child.  I worry everyday about the future, HER future.  I worry about her being able to function as a productive member of society.  I worry about her mom and dad not being around to take care of her.  I could go on and on about the concerns that run through my mind. 

The challenges we currently face are preparing Olivia to learn to read and write.  Identifying letters has been an obstacle that we can't seem to overcome.  Her Cortical Visual Impairment is preventing her from learning the important salient features of each letter.  She is uninterested and lacks the motivaton and commitment to focus her energy on this task.  I feel like we are asking the impossible from her.  I relate it to someone telling me to run a marathon tomorrow.  It cannot be done...today or tomorrow,  but it CAN be done... with time, commitment, and motivation.  Am I willing to run a marathon?  That is the question that needs to be answered.  How can we motivate Olivia to "go the distance" and run this marathon of learning literacy skills.   

I have tried to learn that my primary job includes teaching, protecting, encouraging, advocating for, and loving my sweet Olivia.  I do not sweat the small stuff, but I do sweat the big stuff.    

...our adventure continues
Olivia's "sweaty" mom

Welcome to motherhood

In the days that followed Olivia's birth, I was flooded with gifts and cards.  Some cards were congratulations and well wishes while others were focused on prayers and recovery for Olivia.  

There was one that I will never ever forget.  

There are moments in life, some call them Ah-ha moments, when you know that you will remember that moment forever.  I think we remember these times because in some way they change your perception.  

One of these moments happened when I received a card by my friend and a former college roommate, Stephanie.  Stephanie's niece has Down Syndrome and I believe that 

this was also beneficial to her sister that delivered her baby a year or so prior to Olivia's birth.  

What was it?  A poem.  One I had never heard before, and now one that I will never forget. 

WELCOME TO HOLLAND

by

Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

------------------------

How this poem rang so true.  I was finally here...a mother!  A place I had wanted to be for so long and a place I knew I would fit in perfectly.  And it doesn't matter of its Paris, Holland, or Ohio.  

I'm here, I made it, and I love it!!!

I saw Stephanie today at the local National Down Syndrome Society Buddy Walk.  I am grateful that she shared this poem with me and hope it will also help others.  

...our adventure continues

Olivia's "world traveling" mom

 

"Image"ine that!

Sitting across from the neonatologist six years ago I remember thinking, what do I do with this information?  How do I decipher what he's trying to tell me about our future with my baby.  What lies ahead?

I see on the screen in front of us the MRI images.  I don't understand the explanation about the results that are staring back at us.  Hindsight,  I believe I was in shock and didn't want to believe that all of this was even happening.

The next question I asked would tell me what I needed to know.  As a nurse needing to place a numerical value on this, I asked him, "On a scale of 1 to 10 with 10 being the worst case scenario, how bad is this?"

Reluctantly he told me...8

The massive stroke had damage two thirds of her right brain and some of her left.  Thousands of questions instantly flooded my mind, none of which could be answered.

Those images were supposed to tell us a story of what our future held.  But I am too stubborn to let pictures dictate the future of my child.  So the search was on to find a way to reroute the pathways of her brain. 

Traditional and non traditional approaches were used to attempt to accomplish an almost impossible task.  Everything from--infant massage, music therapy, early intervention, crossover exercises, visual tracking, light boxes, trampoline therapy, sensory integration, vestibular stimulation, and the list goes on.

There are so many different approaches that I could make this a full time job.  I am now looking for ways to teach her basic and beginning literacy skills.  She is doing well in school, but she needs time...Time with learning each new thing.   As her mom, I will give her all the time that he needs.  

...our adventure continues

Olivia's stubborn mom

Photo: Olivia brought this picture home from school today.  She did it all by herself and we are so proud!  

Everything's coming up...daisies

It took time to realize that "it's okay".

It's okay if Olivia doesn't act like all the other kids.  It's okay if she doesn't react the way the other kids do.  It's even okay that she doesn't understand like the other kids. 

It's okay- because whatever she is doing, she is doing it with all of her heart.  She wears her heart on her sleeve.  I've learned the lesson that we should all be more like her. 

Why did this take so long to learn?  Possibly because it takes time to grieve about the loss of the "perfect" child.  I realized that I have not lost anything, but gained everything.   How foolish I was. 

When I finally realized this, I got her involved.   Oh how she loves being with other children.  One of the activities that Olivia is now a part of is Girl Scouts. She is a daisy.  And the moment she was on stage, crossed the bridge and received her daisy smock, was such a proud moment.  I remembered back to the days when we didn't know of she would even be able to sit up, crawl, or the unthinkable...walk.

 And here she is walking on a new path, towards earning and learning new things and it's okay.  It's better than okay.

...our adventure continues

Olivia's a-ok mom

One small step

In our home we celebrate the little milestones. The small steps that others with typical children might take for granted.  Yesterday evening Olivia and her dad returned home from town.  Her dad said with extreme excitement, "You should have seen her!"  He told me "she lit up light a lightbulb" when she did something all by herself.  A small feat that she has never done in 6 years.  

Where there is a high point, there soon followed a low point.  While trying to explain to me what she had accomplished, she wasn't able to tell me.  One problem Olivia struggles with is memory, or recalling short term events.  Or maybe the problem is her delay in speech.  Whatever it is, it's caused from the stroke.  Because of this she is unable to tell us what happened at school that day, a friend that she made, or even what she ate for lunch.  There are large portions of her day that I know nothing about.  

So, what was her big accomplishment that evening?  Her dad helped her verbalize what I saw in her eyes as a story she would have like to tell me...Buckling her seatbelt all by herself!   It was a proud moment for us as we all celebrated...in the garage.

We'll take what we can get, one small step at a time.

...our adventure continues.

Olivia's proud mommy

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