Savanah's Story: 2013

Wednesday, February 13, 2013

CMV and UTAH

There are big things happening in Utah right now. . . HB-81 has been brought to Utah's attention. It is a bill that will educate pregnant mothers about the dangers of contracting CMV and how to prevent this nasty virus. For those of you who may not have read, CMV (Cytomegalovirus) is what caused my daughter's deafness. I contracted it while I was approximately 7 months pregnant with Savanah. To learn more about please visit www.stopcmv.com and read the side description of this blog. This bill is the first of it's kind. Utah is the first state to hear it openly before the House of Representatives. Yesterday it passed unanimously, 71-0. Now we're onto the Senate tomorrow. This is BIG stuff. This is what the STOP CMV family has been waiting for! Please continue to stay tuned. . . GO UTAH!

Friday, February 8, 2013

Haters

For those of you that read this blog and so freely feel the need to share disrespectful and hateful comments regarding Savanah and our decision as her parents to give her every opportunity to hear and live in the hearing world Please keep your comments to yourself. This blog is an opportunity for myself and Savanah to record and share our experiences living and learning in a CI world. We have trials and tribulations like everyone else and for those of you that believe that we chose this for her, Savanah wanted another implant. This was 100% her decision.

Tuesday, February 5, 2013

Activated

Savanah got her second implant activated on January 29th in Logan! It was another one of the experiences that Desmond and I are able to sit and look at and think WOW! This is for real. This amazing medical technology that we have chosen for our deaf child is working. It's working and she can hear us and communicate with this world. She doesn't have to rely on ASL, or reading lips. She doesn't have to be another statisic. She can live like the majority of people in this world. Although we know that CI's are not a cure for deafness, they are one of the most incredible gifts we could give her and they are a tool in helping her live a productive and successful life. If she so chooses, she may take them off whenever she likes. She is still getting use to that second implant but she is beyond thrilled to have brand new processors. We upgraded from the Freedom to the N5 with Cochlear. We've all been very impressed with these. They are lighter, sleeker and much more attractive, and come with a remote and killer rechargeable batteries! Yes!

Bilaterals!

January 9th was a momentous day. Our little sweetie received her second cochlear implant. Her surgery took place at the University of Utah. Dr Shelton performed it once again. My mom and dad were in attendance along with Gracen this time around. It has been almost 6 years since her first implant. It was such a wonderful day, although emotions were tough too work through, we were so excited/nervous/ecstatic for this big day. The decision to get another implant wasn't an easy one for us to make. Hence the 6 year gap. Savanah was such a brave little girl, for being 8 years old, this little girl of ours never once shed a tear, stated she was nervous, nothing. She was one brave chick. She sure is something else!

The surgery process began at 9 AM that morning. We arrived at the hospital and began the registration process. We were shown to the surgical center and shortly after arriving there, we were all taken back to have Savanah begin to prep for surgery. The anethesiologist came into the room and spent a lot of time with her. She explained everything that was going to happen and put in an IV. She was absolutely wonderful, she definitely put everyone's minds at ease. Savanah was taken back to surgery shortly after, she was all grins and giggles. . . The surgery was about 2 1/2 hours. Dr. Shelton called the front desk and told us everything went exceptionally well. The implant was placed perfectly and there were no complications with placing the electrodes. We were relieved. We were taken back to see her in recovery about 10 minutes later. She was very groggy and started having a little unexpected time breathing. After a few breathing treatments, she started coming around. We spend the remaining of the afternoon and some part of the evening in the surgical recovery room. She was able to eat and drink, keep things down and get her pain under control. All the while, still with a smile.

We arrived home from SLC that night around 8 PM. It had been a long, very eventful day! Savanah was exhausted as all of us were. It was crash time. She spent the next 4 days recovering well. We removed the bandage the next day and were pleasantly surprised to find a smaller incision and not quite so much hair shaved this time. Her pain was under control the whole time and Savanah only complained of a few headaches. She returned to school 5 days later. She had many friends looking out for her, bringing her several little surprises and treats. Looking back on this decision, it was definitely the second best one to the first one!

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.