Wednesday, February 15, 2017

A Family Valentine Adventure

Family Valentine Adventure

My husband was on a business trip to Houston for Valentines Day!  Apparently one of the 'Big Wigs' at the company is sleeping in the dog house....or at least I hope he is.....for planning a company meeting at the headquarters in Houston for the entire week of Valentines!

I thought since hubby would be gone it would be a lot fun to have a family Valentines Day with the  three kiddos.  I bought tickets to the #AGentriValentine concert and planned a nice dinner at a family favorite restaurant.  My husband left for Houston early Monday morning and I dreaded the long week ahead of getting up early to drive kids to school coupled with sleepless nights because I just don't sleep well alone.....yes I am afraid of the dark :-) and I am not ashamed to admit it

Our First Adventure of Valentines Evening

The Gentri Valentine Concert started at 7:30 and I wanted to plan plenty of time for dinner so we would be able to park close at Kingsbury Hall and not cause too much stress on Little Miss for her first excursion into the city.  I planned to leave at would take 40 minutes to get to the restaurant maybe a bit longer if we ran into some traffic. I figured since we were leaving early traffic would be fine...I was wrong!!  An hour and 15 minutes later we arrived at the restaurant.  Hubby knows I HATE driving on the freeway and in big cities...I may or may not have had MANY episodes of calling him crying because I was lost on my few excursions into the just never ends well. 

However, tonight I was determined to go dinner and to the concert no matter I was going to brave driving into the city. 

Second Adventure of Valentines Evening

We arrived at the restaurant at about 5:45 and there were only about 4 other small groups in the whole was still early so the place wasn't busy yet.  Kenzi and Cam ordered the all you can eat Pizza and I find out they didn't have the regular menu that night....Little Miss refuses to eat pizza or salad and cannot eat a big sub sandwich....that was the whole menu that night :-(

I ended up ordering her an appetizer and a Sub sandwich that we planned on cutting up into a bunch of pieces in a bowl so she could eat it.  Oh the best laid plans....

45 minutes later..... Kenzi and Cam had received only a few pieces of pizza and we had not received our appetizers, Little Miss's meal, or my food!  Our food arrived about 5 minutes before we needed to leave to make it to the concert on time...little miss is a S.L.O.W. eater and so I had to send my son up to ask for boxes, our check, and two brownies to go because we didn't have time to eat. 

I shouldn't admit this but I had not eaten much all day because I was excited for this meal so I was STARVING!!   On the positive side the scale was down this morning since I didn't get much to eat at Valentines dinner.

Cam had to Feed Little miss in the car... Kenzi was in the front seat with navigation helping me find Kingsbury Hall.... while Cam was in the back seat with little miss trying to quickly feed her so she wouldn't be hungry..She is VERY ornery if she is hungry!

I may or may not have almost slammed into the back of another car that stopped for the Trax train...Heaven help us I am not good at driving in traffic.

Handicapped Parking

Hopefully if you read this blog often you are aware that Little miss is blind. 
Before anybody starts judging about this....our handicapped parking sticker is for our personal situation and I am not saying that anyone else needs one or doesn't need one.  Little miss is a V.E.R.Y. S.L.O.W. walker....for three reasons. 

First - she is still learning to trust us and so when she is in unfamiliar places she is very cautious and nervous. 
Second she has very little experience with a cane and so she cannot get any information about where she is going or the terrain ahead of her and it makes her cautious. 
Third -  She came from a remote area in China and living in an orphanage and has extremely limited experience with walking on busy streets. 

We are working with the school district on getting orientation and mobility for her....but for now we are where we are.   I don't use the handicapped parking anywhere close to home, restaurants, or big box stores takes us quite awhile to get through parking lots to the store with her but we do it.  However, when we are in large cities and have to cross very busy streets with cars everywhere it is NOT SAFE for us to walk with a child that walks in S.L.O.W. M.O.T.I.O.N...we can't get across the street before the light changes, not even close.  She becomes agitated and nervous with all the hustle and bustle and sounds and it is just a nightmare. 

I had fully planned on using it so that I would not have to stress about getting  her across busy streets all the while trying to figure out where we were going because I don't know my way around the area at all.

Parking Attendant tells me there is NO handicapped parking and to go around the block to the parking garage

I realize that we were late...I had planned to get there 30 minutes early so there would be good parking left....but with unexpected grid lock traffic and a restaurant that didn't get us our food before we had to leave I did the best I could.  In stop and go traffic we drove around the block and I am not kidding as soon as we are the next car to drive into the parking garage the attendant puts out a sign  Parking lot full

They suggested we drive to the stadium and take a shuttle.  I had no idea where in the world the stadium was or how to get there and traffic was moving at 2 miles an hour stop and go... I just pulled down a side street and parked about three blocks from the parking garage.  

Little miss had to ride piggy back on my daughter so we could get there on time. 
Little miss is honestly almost the same height as my 17 year old daughter and she kept letting go of her neck and not understanding that she needed to hold on so she didn't fall backwards.  The concert was going to start in 10 minutes and we had more than 10 minutes of walking to get there.  If we had let little miss walk we would have arrived at intermission :-P  

We finally got there and in our seats just in time...the concert started a few minutes late. 

I am not admitting guilt I may or may not have parked somewhere that you aren't supposed to park...all I can say is Kingsbury Hall get some decent handicapped parking!  All the close parking spots were for VIP's and college presidents etc....  Really...VIP's and college presidents can't walk like everyone else *roll eyes*

I was a bit worried that we may have a ticket or a boot at the end of the concert but the alternative wasn't great I took my chances.   Hubby called right before the concert started and I told him our story and he said...don't worry about getting a's okay, you needed to park close and did the best you could. 

Best Husband Ever!!

He felt so guilty about being gone for Valentines Day!!

I didn't know why he wanted me to call him after the concert so badly.  It would be 11pm in Houston and he had to wake up at 6am. 
I called and found out.......

He had emailed GENTRI and asked them to wish me a Happy Valentines on stage

That would have made a very stressful evening so special.....they probably get thousands of requests like that so I am not surprised that they didn't respond to him but it really made my night that he would try to do that for me to make it a special Valentines even though he couldn't be there.

When we got back to the car there was no ticket or boot on the prayers were heard! 

Little miss was asking for 'snuggle with mommy' at intermission - she was almost starting to cry when the music stopped and we were just sitting there.  She was tired and hungry and I felt so bad for mommy brought M & M's and a lollipop and that calmed her down.  When she asks for snuggle with mommy that was her way of saying I am ready for bed...once they started singing again she was rocking out to the music and happy...whew! 

All in all it was a great night.....the concert was amazing even though the rest of the night was not so great!

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.