Savanah's Story: May 2011

Monday, May 23, 2011

OUR Tower of Terror. . .

made me think of posting this.
I really didn't post much about Disneyland.
WE just had WAY TOO MUCH FUN!
Yes, it was clear back in November,
But thought I would share this candid cutie.

This was Savanah's MOST favorite ride.
Literally, we rode it about 16 times.
But if you look very closely at Savanah.
She is hanging onto that implant.
Making sure that implant of hers stays on that sweet little head.

There are definitely challenges to the implant,
especially at amusement parks.
There were times I would have to just shove it in my pocket,
hold onto it myself,
or just trust in the magnet.
So far, so good.

We definitely tested it out at the happiest place on Earth!

Sunday, May 22, 2011

M O V I N'

Well for the 100th post, we've got some NEWS!
We are moving.
This week.
Out of the only home Savanah has EVER known.

Although there were not many kids around,
we lived on the corner, near a busy street,
we were not entirely submersed in the church culture. . .
Savanah has made some wonderful friends.
Friends who have accepted her. Loved her. Played with her.
It will be a sad day for her I'm sure.

Although there is a pool at the apartment we will be living in temporarily till we build/find a house. A little bribe I know for the fish.

I plan on continuing her school year at her normal school next year.
Getting a little of the extra help. . .
And then hopefully in our new home, new location, new neighborhood school,
She can start 100% MAINSTREAMED! Let's all cross fingers.

Desmond and I decided awhile ago,
it was time to move.
This was a good age for Savanah.
Not quite established with friends.
We vowed to each other we would never move her at a critical age.
Junior High/Highschool.
Now that would have been sad. . .

Okay, enough of my rant.
Packing is waiting.

Pure Adventure

Life with this child is pure adventure.
She LOVES everything.
Except the things that her little sister likes!

The other day my mom and I took the kids to a local children's museum here in Utah.
Discovery Gateway.
It's a pretty cool little place.
They've moved locations since I was a kid.
But everything was still the same,
they've got the grocery store, a building site, a garden, creative corners, scientific exploration, a real house, a news station, a farm, the list could go on and on.

It was a blast to watch Savanah.
She has always been a VERY creative child.
Her imagination is WILD and very fitting.
She got right in there and started exploring everything!
And befriending everyone along the way.

Friday, May 20, 2011

I love her.
I feel so blessed to be her mother.
As I laid in bed with her tonight.
(Because she likes me too!)
I softly stroked her head.
I felt her implant.
I wondered if she would ever be mad at me for implanting her.
Without her approval.
Like piercing her ears when she was an infant?
It wasn't her decision, even though I guess it should have been.

I've been ridiculed.
Mocked.
TERRIBLE things have been said to me for implanting her.

But you know what?!?
I KNOW my Savanah.
And I KNOW to the very bottom of my core.
This is exactly what she would have wanted.

Functioning as normally as possible.
Functioning to her highest ability and beyond in this hearing world!
So as I ran my fingers softly over that lump in her head,
I realized that lump was one of the most amazing gifts I could have ever given Savanah.
And I know she'll thank me later!

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.