Savanah's Story: November 2010

Wednesday, November 24, 2010

This Gal LOVED the beach. . .

We spent a little over a week in California the first part of November.
We had three magical days at Disneyland and California Adventure.
And two days (mostly for the adults in LA)
And two INCREDIBLE days at Newport Beach.

You'd think from a six year old. . .
Disneyland would have been a favorite.
And it was. . . she had such a great time.
She met Tinkerbell.
Enjoyed her FAVORITE ride more then 15 times which was the Hollywood Tower of Terror.
She got to sit front row VIP at the Aladdin musical.
Enjoy fireworks above Sleeping Beauty's castle and see Tinkerbell fly all around it.
It was definitely a magical first visit for her.

But what her most favorite part of our trip. . .
The BEACH!
Go figure!
She ran into that water like it was warm.
She splashed in that water like she wasn't cold.
She let that sun hit her face.
She build sand castles bigger then she was!
She is a California beach girl at heart.

It made me wish at this exact moment of watching her run and splash in the water. . .
I wished right then that she could hear.
I wanted her to experience every part of the beach.
The waves.
The water.
The serenity of it all.
I begged Desmond to let her wear her cochlear implant, of course, knowing that would have been a terrible idea.
I just wanted her to hear what WE ALL were hearing.

I realized later that day, after spending several hours at the beach.
It didn't bother her.
She was more then willing to throw that implant off and dive head first into those waves.
She could hear them up on the sand.

Sometimes I think I'm more worried about what she can and can't hear and I pay more attention to that then the moment we're in. So now. . . after my reflection. . . I'll spend more time relishing these moments with her. These moments when she jumps right into that ocean without a care in the world.

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.