Good story about the Sarah and Todd McBride, who have both been deaf from birth, did not know whether their children would be able to hear since deafness isn’t necessarily genetic. And the follow up to their story after getting hooked up.
Birth Defect
I neglected to explain why I was born deaf. I have sensineural hearing loss, which in most cases is a permanent hearing loss. The causes of a sensorineural hearing loss are numerous: nerve damage due to illness, menengitis, maternal rubella, RH blood incompatibility, scarlet fever, absence of semicoclear fluid, cytomeglovirus, chronic exposure to loud noises (industrial work), premature birth, head trauma, drug exposure, heredity / genetics and unknown causes. The areas of concern with sensorineural hearing loss are in the inner ear.
I would fall into the unknown cause category. No one else in the family is deaf, my mom was healthy throughout her pregnancy with me, and since it happened at birth… obviously, it was not affected by illness.
Recently, I learned of a genetic defect called Connexin 26, which is prevalent in people of European ancestry. I had the test done, but tested negative. So the nerve deafness theory stands and the mystery remains.
Speech Coding Strategies
In exchanging emails with another cochlear implant recipient, he asked what coding strategy I was going to use when hooked up. Imagine a perplexed look on my face. You may think it’s nuts that I’m taking on such a big undertaking that I wouldn’t be up to speed on coding strategies. Remember, I was just barely pregnant when I started the CI investigation and testing. I learned everything I could back in the Fall, made the decision, set a date, and just moved on with current things.
As I mentioned before, July snuck up on me (having a third kid and another surgery will do that to you) causing me to rush to get things done. By the time it arrived, I had no time to refresh my memory on the research — just what I needed to know about the surgery and recovery.
One week from this Friday, I’m getting hooked up. Boy, makes me sound like Data from Star Trek, doesn’t it? There’s the switch, flip it on, sir! I contacted the audiologist and she said we’ll be using the ACE speech coding strategy. The link provides one page of information on speech coding strategies in its simplicity.
Well, isn’t this a nice change? An entry that has nothing to do with how I’m feeling today. I don’t want this to be a whine-blog. My morning was good. After lunch… don’t ask.
The Album Is Open
I promised pictures. And pictures there be!
One Small Step
I did manage to get one computer task done today and it felt good to do it. However, I’m being forced to share a column with another person because of my inability to work right now. They didn’t twist my arm into doing this, but I agree it’s necessary since it’s a timing issue.
Oh, I love the person with whom I’m partnered. It’s just that I had been looking forward to this opportunity ever since I first heard about it. We didn’t get going on it right away and then the baby came along with all the health issues when they were ready to move forward.
I hit rough waters again this afternoon. I guess I can only do so much at the computer per day. I had to get on so I could write my daughter one more email before she comes home. So I figured I’d drop a note here while I’m at it. Thanks for letting me vent.
Ugh
I’m at my desktop PC trying to see if I can work wearing shades. Nope. I’m sick to my stomach.
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Sigh
I rarely post my personal feelings in a blog, but I am just so frustrated and angry with being cooped up and uncomfortable. No one to talk with since poor Paul is stuck with the house work and managing the kids.
I watched the baby while Paul took the middle child out to run errands. It wasn’t easy watching the baby when my eyes would start reeling as if it was floating in water. In other words, I feel constantly drunk and not in a fun way.
I know it will pass, but it is becoming a nuisance not to get things done and being lonely and stuck in the same room all day with nothing I can really do. I’m sick of all the popcicles and cold stuff. Haven’t had breakfast because I can’t think of anything I can stomach though I’m hungry.
I’ve also lost opportunities or got less of them because of my unexpected health issues this summer. It’s enough to make me want to bang my head on the wall and cry in frustration. Thankfully, I have managed to enjoy my newborn throughout this misery. I’m trying to keep a positive outlook that my new way of hearing will be better than I expect and open new worlds.
I just hope I’m better by Thursday when my girl comes home from camp.
Still Dizzy
Title says it all. Still in bed carefully treading water.
Rough Night
I didn’t have a good night. It started with coughing, then the ear started having a few sharp pains. Poor Paul had to get up to get my a painkiller. I continued to cough later in the night. Paul had to get up with the baby, so I had to weave my way to the kitchen to take something for the cough. Back to bed, but couldn’t fall asleep.
I gave up around 7:00 am and went in the kitchen to get all my Rx and a drink since I didn’t want to wake Paul again. Yes, another day in bed… another day away from my computer and getting work done. No matter what a mom has been through, nothing can keep her from feeling guilty about not doing housework and taking care of the kids.
Still have to eat soft foods. Eating anything crunchy like cereal is uncomfortable on the ear. Just weird, not painful.
Forgot to mention Dr. Peter Roland of Southwestern Medical Center is the one who performed the surgery. He did not cut any hair and the stitches are right behind the ear — hard to see. We took a picture, but I don’t think it’s visible.