Savanah's Story: April 2010

Friday, April 30, 2010

It's been a good 3 years. . .

but officially today. The warranty and "insurance" on the CI is gone.

GONE!

Ugh! So tell me parents, especially ones with Cochlear, what have you done. Did you pay for the insurance through Cochlear? Did you purchase other insurance else where? Have you just winged it? Home owner's insurance?

Des and I are at a stand-still. We really just do not know what is going to be the best option, so please comment away, I desperately need it.

Crash! Bang! WHOA!

So in the morning, after a peaceful nights rest. . . (or not), depends on the night, Desmond and I (and sometimes Miss Gracen) awake to Savanah and her "CI-less" voice.

Oh geez, let me tell ya, the volume on that voice, without the implant, is electrifying to your ears.

Especially when it is out of a deep slumber.

It is so darling though, because she doesn't know how loud she is really being, she can't hear herself, so why should any of us hear her right?!? It's the same way when she is going to bed, she's been tucked in, kisses and hugs, a story or two were read, and then the CI comes off. Silence, daddy and I leave the room. Not more then 15 minutes later, there is a ruckus, a LOUD ruckus I might add, and she is awake, fidgeting with her toys. When you appear back into that purple room, she is stunned, SHOCKED at why you are even there, remember, she can't hear that LOUD noise that just occurred, so why should I?!?

Thursday, April 22, 2010

Turning LEMONS into SUPPORT. . .

So you may or may not already know by now, but JUNE is National CMV Awareness month!
(http://www.stopcmv.org/june.php)

And you may or may not know that I am the area rep in Utah for this foundation.

And you may or may not know that I am going to THROW the BIGGEST lemonade(fundraiser) stand for this non-profit organization EVER!

So PLEASE keep your calendars marked for JUNE 5th in UTAH VALLEY. Location to be announced at a later date, and if any of you are unable to attend and would like to donate to help support this cause, please do so. http://www.stopcmv.org/donate.php

LOOKING forward to this awareness/fundraising event! It's going to be awesome! And if any of you would like to help, please let me know.

Tuesday, April 13, 2010

Happy Hearing Day!

Three years ago, our family was blessed. Savanah was especially blessed with the most wonderous technology.

On this very day, 3 years ago, we made the drive to Primary Childrens. We unloaded and walked into the building. Our stomachs turning. Praying we had made the right decision. Watching our everything get ready for major surgery. My heart ached for her. It ached for Desmond and myself. Nerves were high. The surgeon came in, explained the procedure. We gave hugs and kisses to Savanah. Tried to reassure her everything was going to be okay. 45 minutes flew by, that waiting room grew smaller by the second. Desmond and I were shocked when Dr. Shelton walked through the doors. "I am done. Everything went perfectly." Music to my ears. I followed the recovery nurse back, only one parent, of course mom. I came around the corner and peered at my Savanah, drowsy, medicated, sore. I held her in my arms. Relieved. Nerves were gone. Everything went well.

Days following were miraculous. She recovered quickly. Some of my fondest memories are from those days. She was activated one month later and her LIFE began!

What an amazing world we live in. My deaf daughter can hear. And can HEAR WELL. We celebrate this day for Savanah, for our family, because it was definitely a day that changed our entire lives.

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.