Savanah's Story: August 2011

Monday, August 22, 2011

All Systems Go

Pediatrician. Check.
Dentist. Check (with ZILCH cavities!)
Back to School Night - FLOP!
Mom wrote the wrong time down!
Silly mommy. But oh well. . .

First day outfit laid out.
Lunch is packed.
Backpack is full.
Savanah's in bed EARLY!

And yes tomorrow. . .
I'm going to have a SECOND GRADER!
Where has the time gone?!?

Tuesday, August 16, 2011

Perks of the Internet

So several years ago I was contacted by the founder of STOP CMV
and we immediately became friends
and after several years we FINALLY met last week
she flew in from San Fran for another CMV mommy
who lives in WVC whose daughter was turning 16
and they had a big swim bash party for
so during this little shin dig I had the rare
and very SPECIAL opportunity to meet 4 women
whom I admire and look up to, whom I share a lot with,
inspirational. . . Janelle, Sharon and Shannon and Diana.
4 incredible mothers all on the same mission
+ me and my little Savanah on the mission to Stop CMV
but this night it was all about FROG's (Fully Rely on God) sweet 16!
And it was a blast.
Amazing women I have in my life
all because of the internet.

Monday, August 8, 2011

Testing 1. . . 2. . .3

Savanah had another great mapping appointment.
But something weird happened.
For the past 6 months she has been wearing a hearing aid on her right ear
and for some reason Desmond and I both "think" we can tell when she has it in and does not have it in. . .
We have thought it was benefiting her.

After Cache did all of her testing
we learned something interesting.
She did better on her audiogram without her hearing aid in her ear
So. . .
we were left to question the hearing aid.

She has lost some more hearing in her right ear.
A progressive loss, so who knows. . . it may be time for another cochlear implant in the next year or so.

All we can do is keep observing.
But yay for Savanah and keeping her cool for the 3 1/2 hours!

Tuesday, August 2, 2011

It's that time of the year again. . .

Mapping time.
So Logan here we come.
We're making it a girls trip with Grandma.
Swimming.
The Beehive Grill.
The scenery.
More swimming, I'm sure.
Free Waffles in the morn.
Maddox.

And last but certainly MOST important. . .
A PERFECT AUDIOGRAM!
(Here's to hoping!)

Monday, August 1, 2011

Babysitter Instructions per Savanah

Yesterday Savanah was playing pretend.
She was the daddy of a baby. And Gracen was kinda the mommy.
The mommy who was definitely not interested in being a mom.
Anyway, Savanah the dad was going to drop the baby off for 5 weeks with Grandma.
And Grandma was to take care of it and by Savanah's rules.

Here they go.
"Change her diaper ten times"
"Give her lots of milk"
"And fishgolds"
"She can't walk so she's has to crawl"
"Rock her"
"I will have you raise her"

Good thing it's going to be awhile before Savanah babysits
or has her own. And someone please tell me where I can buy some "fishgolds"!

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.