Savanah's Story: March 2011

Friday, March 25, 2011

S E V E N ! ! !

My baby girl turned 7 today.

WOW!

I cannot believe we have had the privledge of being her parents for 7 years!

That's 2,555 days!!!

Oh Happy Birthday my darling daughter, and PS. . . she shares a birthday with Grandpa. So we'll shout out to him as well!

LOVE TO YOU BOTH!

Monday, March 21, 2011

I just sent Savanah off to school.
Countdown to 7th birthday, 4 days I was reminded.
Desmond and I stayed up late watching old home movies.
We watched several of Savanah.
One in particular that struck us was only a few years ago.
4 almost to be exact.
RIGHT before her implant.
She wasn't able to communicate with us.
She had the best facial expressions though!
She was verbal in jibberish, she wasn't using ASL, either were we.
She was "sort of" lipreading.
She was just more watching our faces.
It was such a moment to watch again.
Since being implanted and her being able to communicate with us and everyone else.
I feel like we sort of forgot about that time in all of our lives.
It was such an impactful time but for some reason, we have blocked it out.

How far we've come in FOUR years! Savanah is talking, reading, spelling, going to school, expressing emotions appropriately, understanding different noises. . . GROWING up. We are so proud of her everyday, these old home videos are good to watch, such a blessing to see where we all were and where we all are NOW!

Sunday, March 20, 2011

A favorite poem of mine. . .

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

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.

Remarkable.

(Savanah with little sister, pictured above).
Sorry it's been such a long time.
We've just been busy.
Living life.
Enjoying it.
Savanah is almost done with the first grade.
She is shining!
She is doing amazingly well with spelling and reading.
We were told she wouldn't be able to read till she was 10+, and yes she is 6!
Granted only for 5 more days. After 5 more days, she will be 7!!!
Where has the time gone?!?
Savanah is sure growing up.
She plays the Wii like an old pro.
She watches what she wants to watch on TV, so yes, she controls the remote.
She bathes herself, dresses herself and pretty much is 100% independent.
It's definitely been fun to watch Savanah develop into her own little personality!

CMV, Hearing loss and Cochlear Implants

Some of you who have read our family blog are already familiar with Savanah's story. But I decided to start an entirely different blog dedicated to Savanah's journey. Her triumphs, challenges and this wonderful adventure we are all on together. Savanah failed her newborn hearing screening when she was born. We were told that she had fluid still in her ears since she was two weeks early. I brought her back to be re-tested six weeks later, and she failed again. I was told she was deaf and I was completely devastated. We have no hearing loss in our family and so she was tested through a blood test for many different things that could have caused deafness. It took several weeks for the results to come back. I had this perfect little baby who might have something wrong with her. The test that we had to wait on was called the "TORCH" test. The letters in it stands for a few common viruses and illnesses that cause deafness and the "C" stands for cytomegalovirus. Most of us have had this virus which is in the herpes family, but when contracted during pregnancy if you have never had it before can cause deafness, blindness, seizures, brain calcifications and learning disabilities and even death. When her results came back positive with this virus, our entire summer with our brand new Savanah consisted of many different doctor appointments. Traveling to Primarys, the U, ENT's, audiologists etc. It was extrememly exhausting, particularly because there was so much unknown regarding cytomegalovirus. We learned from a neurologist at the U that she would continue to shed the virus through her urine until she was about six months old and that particuarly children who had never had the virus could become infected. We had to take many precautions to make sure that did not happen.

At the six month mark Savanah recieved a hearing aid in Sept. of 04 and after a year, we noticed she was making very little progress with her speech. I started looking into alternative answers to help her to hear. We were learning sign langage as a family but it was difficut for some members of our family to learn and Savanah really wasn't very interested in signing. I wanted people to be able to comunicate with Savanah and have relationships with her. We decided a cochlear implant would be awesome and allow her to hear like a normal individual when on. Savanah recieved the cochlear implant surgery on April 13, 2007. It was such a wonderful day, the start to something big.The surgery took about an hour and a half. She recovered beautifully. She was riding her bike later that day. The incision was rather long and very easy to take care of. She was just like any other 3 year old during the recovery until she could be activated. She was activated on May 20, 2007 and since then has been a hearing girl when it is on. I highly encourage everyone who reads this blog to research cochlear implants and learn more about them. I have added some links below. Savanah has attended school through Utah Schools for the Deaf for three years. She is now catching up to her appropriate age for language and is a thriving, healthy and happy eight-year old. We are so proud of her everyday! She is mainstreaming 100% in our neighborhood school. She is on grade-level with her third grade class and loves to learn! She is a wonderful reader and always gets PERFECT scores on her spelling.

She just recently received her second cochlear implant, she was implanted on January 9th, 2013 at the University of Utah by Dr. Shelton again. The surgery went smooth and recovered quickly. She was activated on January 20th, 2013 and has absolutely loved having a second implant. She now wears two BRAND NEW N5 processors from Cochlear.