Wednesday, February 1, 2017

Results from Cornea Specialist Appointment

Five Months with Little Miss

She loves to play the "I Love you Most" game with is so cute!

She has learned so much and grown so much since she first came home.   We remember those early days when all she wanted to do was lay in bed with headphones on listening to Chinese nursery rhymes..... Her language was limited to I hungry, Go potty, drink of water, go to sleep or find it. 
She used to just rock back and forth and jump around in circles all day and did NOT want to interact with anyone.  

She loves to Yell...."David Archuleta is BAE"  all. day. long!!  I am not exaggerating, that is how she gets my attention when she wants something....thank big sister for that one :-)

We have come a long way from just saying those basic, eat, hungry, potty, sleep days!!

Mommy I need something
Help me
Daddy hold you
Mommy sit by you
Toby get off (she says this when she wants one of the dogs off her favorite chair)
Go to Little Miss bedroom
I want a fig newton
I want hashbrowns
Mommy is making food
Good night, I love you
Give Kenzi a hug
I want my toy box
What is this  (usually she says Zhè shì shénme)  She says this All. Day. Long too!!  But she is learning a lot!
I want Chinese Elmo  (she loves to watch elmo in mandarin)
I want mommy read a story
More story please
I want to swing
And a lot more.........

Misunderstandings about the Cornea Specialist Appointment

I feel that I need to clarify a few things about my previous post because many people seem to have misunderstood a lot about this appointment as well as what the result would be if she had a cornea transplant.  

1. Several people questioned us about the surgeon who offered free services for little miss and why would we pay for something that someone offered for free.  You must understand that this offer while so sweet and generous, was made by the surgeons father (who heard her story told by his stake president at a stake conference in Thousand Oaks, California....long story about how this all happened)  He wasn't sure if his son could do anything but just wanted to offer anything that he could possibly do to help her.  Just because you are a surgeon does not mean you perform every type of surgery.    This surgeon was a very sweet and very generous man and I had a wonderful conversation with him and he helped us understand a lot about Little miss condition and where we needed to look for services for her, however, he was unable to provide the services that she would need.  

2. Many people believed that this surgery would restore Little Miss eyesight completely or near completely.  You must understand that Little miss condition is NOT such that her eyesight could ever be restored.  I am sorry if I did not clarify this better but her eyesight would not have been restored with the cornea transplant.  What we were hoping for was some light perception or possibly being able to see some shadows to help her with orientation.  That was BEST case scenario.

Why is light perception or shadows such a big deal?  

Without light perception Little Miss has been unable to regulate her circadian rhythm and therefore her sleep is quite erratic and she runs the risk of developing Non-24 syndrome  Individuals with non-24 can struggle such that they cannot even hold down a job because their sleep is so erratic and they will literally fall asleep anywhere, anytime.  It is hard to explain but if you are curious you can look it up.  

Light perception could allow her to see Christmas lights, enjoy light up toys and help with some orientation in the world around her as well as help her regulate her circadian rhythm and her sleep patterns.   Being able to see shadows of doorways or buildings or things around her could help her orient herself in the world around her a little better. 

This is what we were hoping for in taking her to see the cornea specialist.

Results from the Cornea Specialist Visit
Little miss was SO brave!!  She did really good at the appointment and got some M&M's after

The cornea specialist was amazing...he was so straight forward about everything and we really appreciated that he was so candid with us and yet said I will do whatever you decide.
I feel I need to explain things so that there are no misunderstandings about the ultimate decision that was made for her.

1. The immune system attacks the cornea transplant and in young children their immune systems react pretty violently.  Rejection of the cornea happens in about 20% of cornea transplants.  This can cause inflammation, pain and requires immune suppressing drugs as well as frequent visits to the doctor to manage the immune reaction.

2. He evaluated her 'potential for vision'  this is important because this tells us if there is even any hope of her being able to see after the transplant.  She has little to no potential for vision.  He was hoping to see that she had some light perception that had stimulated the visual cortex of the brain.  Unfortunately both the pediatric opthalmologist and cornea surgeon agree that little miss does not have light perception, or if she does it is so minimal that it is not enough to regulate her sleep cycles or stimulate her visual cortex in any appreciable way.   Even if he could restore some light perception  for her....her brain would likely not be able to perceive it and therefore she would still not 'see' what her eyes were seeing.  This was not the news we had hoped for....we realized that she was not going to be a candidate for the surgery.

3. He said that with her eyes being so small there may or may not be an iris or a lens underneath the white that had grown over her eyes and that would require further testing.  Even if she did have a lens...with the size of her eyes he would not be able to cut enough to transplant a cornea without affecting other structures in her small little eyes. It would be a very risky surgery to perform and more than likely would not result in any more vision for her. 

Ultimately the cornea specialist said:  In her case...the benefit would certainly not outweigh the risks and he would NOT recommend the surgery for her.  We both agreed.

We Did not adopt Little Miss hoping to Change her

 God created her perfectly from her head to her toes....including those sweet little eyes!  God has purpose for her in her life and even purpose in her blindness and she is perfect just the way she is. 

Many people have the misconception that because she is blind she is limited in her ability to do things in her life.  She is NOT limited!!

She can do just about anything any sighted person could do....we may have to get creative but ultimately....she can and will do whatever she wants to do!  Big sister wants to take her snowboarding, she loves going swimming, sledding....and I am sure she will find more and more hobbies as she gets older...


It isn't some amazing feat that a blind child cleans their room, learns to cook or bake cookies, cakes or pie, goes skiing, swims, runs cross country, knits or crochets, enjoys playing wii games, reading books, goes bowling,  goes to college, gets married, has children.....  Her life will be rich and full and she will do whatever she wants to do in her life and we are here to support her in her journey.

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