Savanah's Story: Just thrilled!

Monday, January 18, 2010

Just thrilled!

I just have to say how thrilled I am to have found www.stopcmv.com

I cannot tell you how lonely it has been for us as a family to not have anyone know what CMV is and to have professionals tell us so little about it.

We know Savanah contracted it somewhere near the end of my pregnancy. We know that I contracted it POSSIBLY throught the pre-school I was working at. We know it POSSIBLY caused her deafness. We also know that she did pass it on to my mother 6 months after she was born. And we KNOW that she is not infectious anymore.

I am watched carefully for this virus during my pregnancies. I have to see a perinatologist. They have to look at the baby over and over again, making sure everyting checks out and that this baby is in the clear.

Now for those of you who know me, please know this. . .there is nothing anyone can do if you do get CMV during your pregnancy. BUT the whole point of STOP CMV - The CMV Action Network is PREVENTION! SPREADING the word! You never hear about this virus in your OB's office, because they can't do anything for it BUT you can!

Please if you know me, or don't know me and if you care about Savanah and any child out there. Or if you are pregnant or know someone who is, please check that website out and educate people. You have no idea what a difference you could make.

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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.