Savanah's Story: June 2009

Saturday, June 27, 2009

There is something frustrating. . .

About swimming with a deaf child. I am more anxious and nervous. When Savanah has her cochlear implant off, she goes into an entirely different world. It becomes "Savnah's world" and only she can "hear" in it and "talk" in it. It is so interesting to watch, I become fascinated by this everytime we swim. She talks louder and jumps all over the place.

You can tell her to "don't run, only walk" or "don't splash those people" or "it's time to go home and we can swim tomorrow" - BUT Savanah does not hear any of that. Whatever she lip-reads is what she will take in if she wants to. She is more stubborn while swimming and being in her "world." Sometimes I think she prefers this world. It is so peaceful in her head. So quiet. And she can "hear" EXACTLY what she wants to hear.

Me on the other hand, I have become so use to this AMAZING device in her head. This device that is allowing my beautiful five year old daughter to hear everyday. This device that when it is on she gets to experience "our world" - the world of hearing. I cherish moments when she has it on. The simplest sounds that she can hear and she lets me know it. I am so at peace when it is on.

Thursday, June 25, 2009

"What do you want to be when you grow up Savanah?"

Yesterday I asked Savanah what she wants to be when she grows up. She gave me a litle confused look and then I started listing off several different careers, a doctor, nurse, policeman, firefighter, artist, teaceher etc. and her response was: "NO MOM! I want to just be a mommy so I can watch TV all day." - I just had to laugh and so do all the other stay-at-home mom's out there right?!?

It is so hillarious that in the eyes of my five year old, that when she is at school all day, she thinks I just sit and watch TV. A magician must go grocery shoppng, wash her clothes, clean the house, run errands and cook for her! Some magician!

Friday, June 19, 2009

"Clean up, clean up. . . everybody, everywhere. . ."

So this child of mine, my sweet little Savanah only cleans her rooms sometimes, and when I mean sometimes, when it is asked of her. We tried a chore chart for awhile, it worked for a couple of weeks then it wore off. Either I would forget or she would forget. I tried helping her make her bed every morning and put her toys away. That just didn't last. Maybe I am too weird, everything has it's own bin. All of the dress-up goes in the green bin, all of the miscellaneous toys go in the clear bin, the babies and the barbies - pink bin - you al get the picture. So last night I let her clean her room up the way she wanted to clean it up. I wasn't in there hounding her, making sure every toy was in it's correct place, she did it the way she wanted and it looked great! But before I could take a picture of the final product, it was destroyed by Gracie!

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.