We had to wait over a month between finding out she had lost her left ear hearing and getting a MRI and CT scan of her ears. Funny side note, the MRI tech told me they would take a few pictures of her brain while she was out as well just to "check" things. I for a real kick out of the report stating they didn't find anything out of the ordinary in her brain scan (like say, a stroke!). Anyway, Her ears are apparently the only thing she has that screams CHARGE syndrome. She has the classic lack of a vestibular (inner ear balance) system. She also has only mostly formed cochlea (the snail shell looking part). Most people have 2.5 solid swirls. Emmeline has as the ENT put it "2 and a squeak". There is also a very small vein in every one's ears that is about the size of a mechanical pencil lead. The surgeon said he saw one once that was the size of an eraser. Emmeline's is the size of this pointer finger. Also, she has no right jugular vein in her neck. So basically the vein in her ear is functioning like her right jugular. Weirdo.
So what we found out was, she is eligible for a cochlear implant. At first I thought, cool, she'll be able to hear. The next day I thought, wait, maybe this isn't right. The next day I thought, cool, she'll be able to hear. The next day...you get the idea.
Don't get me wrong the technology is AMAZING and way beyond anything I could ever dream up. But it's also scary. First off they would have to shave the implantation site. Silly I know but we have never cut her hair. Ever. I could just cut it before hand but I don't like the idea of doing it when someone else says I should. It's the "I'm in charge" in me. I'll get over it though. What choice do I have. "No thanks, I don't want my daughter to hear because I like her hair"?!
There are other risks that are totally out of our control so I'm trying to let go of those but they linger. I am SUPER not keen on the idea of someone peeling back my daughter's scalp and ear and putting some BORG in her. My very cool sister Katie says it will make her "different like a friggin super hero" and that sounds pretty awesome.
A big drawback for me is that even though she doesn't have much hearing in that ear right now, after the CI she probably wont have any so if it doesn't work then she will be dark on the left side forever. Not really a choice I want to make for her. The problem is if we wait for her to decide the benefit goes drastically down. Right now her auditory nerve has been stimulated to a normal hearing level since she was a baby. If we wait to put it in the brain will start to shut off the auditory nerve to that ear.
Either way we are in kind a time crunch since it will take at least a month to get insurance approval and then to actually get the surgery. Then another month before we can get "online" and then a year of intense rehab. Did I mention Josh getting ready for his dissertation performance? Yeah not the greatest timing since whenever I talk about something medical he gets this glazed look in his eye. I think his brain might be full. So that mean my least favorite thing. Waiting. I really need tons of mental support and "yes this is a good decision" to go through with this so I would rather wait a couple weeks and have that support then try and go this alone. I just wish Emmeline could tell me. She trusts me and I REALLY don't want to betray that trust.
The external part. It is help on via magnet under the scalp.
The part in her scalp. It sends signals via those little wires into her cochlea (snail shell) which then sends it to her brain
picture of where everything goes.