Savanah's Story: July 2012

Sunday, July 15, 2012

Mapping & Sno-Cones

Recently Savanah and I ventured to Logan for her cochlear implant mapping. Mapping appointments consist of working with our favorite audiologist Cache but they involved audiograms - sound programming - and electrode tuning. This last appointment. Was just Savanah and I. A little mommy-daughter date. The drive to Logan (which is about 2 1/2 hours away from our home) was eventful. I was able to talk to Savanah the entire drive up there. I learned a lot about her. Have you ever really just talked to your kids? AND really LISTENED?!? This drive I listened to her tell me all about her friendship with Elly. How she really does enjoy being a big sister. How swimming is one of her favorite things to do and that she really doesn't like seafood or meat. I also learned that Savanah understands her deafness and "thinks it's pretty neat at night to not hear anything!" I also learned something I never had heard before - A sno-cone is her favorite treat and that summer was her best season. I agreed with her and told her I feel the same way. Later on that evening, after her mapping appointment, we each enjoyed a good sno-cone. She had lime and I had tigers blood. And it was a perfect day. The coolest thing about this day though - was the fact that while I was driving, holding both of my hands on the steering wheel, I was able to verbally communicate with my deaf daughter. And through the power of technology and medical expertise and a LOT OF WORK on both of our parts - she was able to listen to me. I didn't have to rely on sign language at traffic lights. She did not have to read my lips. We talked. And it was wonderful.

Friday, July 6, 2012

Different

So Savanah has a new best friend. This new BFF lives a few doors down. In our new hood. She is also 8. She is a little tom-boyish too so you can imagine how much Savanah is just eating that up. She loves it. They love each other. They sleepover. Play all day. Take tennis together. They are with each other ALL THE TIME. so y

And you know what I absolutely love about this new friend of ours. Not only is she super accepting of Savanah. But she has also been a HUGE model of difference in Savanah's life as well. In Utah it is pretty rare to see people who are of different races. Predominatly white people live in Utah. So to Savanah having a friend who was not white was huge. But I have to tell you. NEVER once has Savanah mentioned to me the difference of her skin color. Never once has she said anything to me. We're all different. Light. Dark. Hearing. Deaf. Blind. Handicapped. Blonde. Brown eyes. The list goes on. . . And that is the beauty of the human race.

Legit.

If you have a copy of 'The Endeavor' Check me out. A whole article dedicated to Savanah and the fight to Stop CMV!

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.