Bionic Kids

2006-12-26T13:32:00.000-08:00

Bionic Kids

Christmas morning 2006. It's been over a year since my last blog. We've experienced lots of changes. John is doing very well in kindergarten...almost caught up with his hearing peers. We are thrilled. He is doing so well. We are just working on articulation at this point with him. He sounds just a normal hearing kindergartener! Emily has made enormous progress as well. The difference in her Christmas recital from last year to this year was amazing. Her language has improved so much. People still have a hard time understanding some of what she says, but for the most part she is progressing very well. Receptively she almost age equivalent to a normal hearing 4 year old. She tests out at about 3 years 4 months. She is doing well in her preschool classes. Her teacher really works with her.

They both had a tremendous Christmas this year. John wanted Lego everything! Emily loves Polly Pockets and wanted the "hip hop cruise ship." They were very excited Christmas morning. It was a great day!! Happy 2007 to you all!!

2005-06-18T13:45:00.000-07:00

JOHN'S ACTIVATION DAY/INITIAL STIM

After waiting the typical three/four weeks after surgery, my husband and I were anxious about John's initial stimulation. To say that we were excited was an understatement. We didn't know what to expect with John. Since he had some hearing early on, we weren't sure how he would react hearing in a new way. It took us an hour and a half to drive to Birmingham. I know initial stim days are exciting for audiologists. They get to "flip a switch" and hopefully change lives. Mom, Dad, two sets of grandparents, and an aunt piled into a room with the audiologist and an assistant. You can only imagine the nerves and pounding heartbeats. The audiologist explained that we would hear beeps (mapping) first for a while, then we would "go live." I was so ready to skip all those beeps and talk to my son. When she hooked John up to the computer and started mapping the first electrode, John looked up at tried to see where the noise was coming from. It was instant! The tears started flowing! We passed around the tissue,and I took a deep breath. I remember my husband's first words, "Thank you, Advanced Bionics!!" It was extremely emotional and liberating at the same time. All those weeks of worry and wonder were now behind us. John's CII device was working beautifully....all electrodes were firing. He sat like a trooper (a 27 month trooper) through it all. Then came the moment to "go live." I could tell that everyone in the room wanted to be the first to say something to John, but the honors were all mine. I said (tearfully), "Hello, John. It's mommy." Not very profound, but what else was I going to say?? He looked around; I kept talking so he would find me. He smiled. So did I.

This cochlear implant is a pretty amazing peice of technology!!

2005-06-15T16:45:00.000-07:00

EARLY IDENTIFICATION

Both children were identified with hearing loss in the hospital, before we left to come home. I can't say enough about the infant hearing screening. We would not have known for some time about John's hearing loss since it was moderate at first. By the time he was 19 or 20 months, John's hearing had progressed rapidly to severe/profound. We were devastated. My husband and I had just come to terms with the hearing aids...now they were providing little or no benefit. Our speech therapist had been suggesting that we look into the cochlear implant. Oh my gosh...those words just scared the daylights out of me. Are you kidding?? I had researched the cochlear implant on the web....yikes...surgery for my little child??? I knew I had to get this ball rolling. John was losing precious language development time. I made the call to the Children's HEAR center in Birmingham. We met with our audiologist, and did several months worth of testing. John's hearing loss was not only progressive, but also fluctuating...this made the audiogram more difficult to pin down. Finally John qualified as a candidate for an implant. The next step was to ensure precert from our insurance company. I really can't say enough good things about that initial process. The preauthorization came back relatively quickly. John's surgery date was scheduled for July 2002, two months right after the birth our daughter, Emily. Talk about a crazy time in our lives!!

John's surgery was successful. He was implanted with the CII from Advanced Bionics. We were on our way home in less than 24 hours. In fact, we had to stop on the way home for french fries! I wish someone had told me that "walking" would probably not be back to normal for a couple of days. I remember really getting upset that John couldn't walk. I thought, Oh, great...first he's deaf, now he can't walk. Naturally, his balance came back and he was running within a few days.

Emily's story is a bit different. We called Emily our "jet engine baby." Her audiogram was off the chart (120+ db). We knew she would qualify for an implant immediately. She did. Before she was six weeks old, she was aided just like John was. I knew the aides were providing very little benefit, but I wanted to give her access to any sound at all. My husband and I decided that we wanted to push the envelope on the FDA 12 month suggestion. The surgeon had already implanted another baby at 8 months, so that became our goal as well. In January 2003, Emily was implanted with the Advanced Bionics, CII. Emily's surgery was much different from John's. Emily has a cochlear malformation called Mondini's dysplasia, which means she only has 1.5 turns of her cochlea. The normal cochlea has 2.5 turns. Because of Emily's age and the Mondini's dysplasia, Advanced Bionics sent out a surgical representative to be present during the surgery. That was an incredible reassurance knowing an extra set of eyes and hands was able and ready if necessary. Our surgeon was amazing. He was able to get a full insertion of the electrode array. Because of Emily's cochlear malformation, she had what's known as a "gusher." It was a big one!! She leaked cerebral spinal fluid from her cochlea which caused her hospital stay to be extended - a week. We watcher her very closely once she got home. She did great...what a trooper!

My next post will tell of our remarkable experience with initial stimulation - "turn on." Get ready...it's quite amazing.

2005-06-15T11:21:00.000-07:00

I am a mom of two children implanted with the Advanced Bionics CII cochlear implant. Ours has been a very sucessful journey into the hearing world. John, 5, was implanted at 27 months. Emily, 3, was implanted at 8 months. Both have unique stories to share.