Gathering information for Marianne...This has been an interesting Journey for all of us. To hear or not to hear, is not really the question for us. The question is with Auditory Neurapathy, the auditory nerve is sometimes stimulated, and then trying to teach the brain how to understand. Some evidence and research show that implants can help keep the signal or impulse be more consistent, but if there are other issues with hearing like "profound deafness" where the opportunity to hear"speach" sounds without intense amplification is also Marianne's challenge. So...off to CO we go to have another test performed so that we can see if her auditory nerve has had enough stimulation to support the idea that an cochlear implant could help her. Sound like an easy decision right? Well...then there is the complexities of insurance. "hearing is an optional sense." What?? yes it is true, hearing aids are not covered, and CI are only covered at 40%. Then we have to see if her secondary insurance will cover the rest....story to be continued following these cute picture!
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| This is how sister and I sleep...see the bed below? That were I was supposed to sleep. HA HA! |
I'm back: so let's say that the secondary insurance decides to cover it. $250,000...then we have to hope that she keeps the exterior processors on her head and if anything breaks, that is our cost. Then there is the "upgrades" that happen every 5 years (to me it is like the idea of upgrading your phone--a little strange). Those up grades might or might not be covered....
Then in 10-15 years having "upgraded" surgery...same cost but by this time she might not have her secondary insurance so what then? what a sad decision to make, but there it is. Here are some positive notes for me: Marianne is happy, loves her family, communicates with ASL (which we are thrilled with), and she is who she is. The moral question: we live in a "hearing" world and should/could Marianne have access to that? easy question on the surface, but let's dig a little deeper. Well through more research we've found a little more interesting info. Background: if your brain had ever received auditory input (even in infants up to three weeks old before loosing hearing), the brain holds on to those sounds and when the sounds of the same thing is put through the processor the "synthetic" sound can be over ridden by the memory of actual sound that the brain heard be "replayed" in the brain. Interesting!! For Marianne who has never had consistent input all sound that the implant picks up and at her 90+ decibel range (which does not include speech), it will have to be taught to her.
We are in a critical time line because in her time frame if the auditory nerve isn't stimulated then the brain re-routes it's energy towards "touch". That is fine for me, it is just going back to the moral question: if you live in a hearing world and can access it, should you?
Here is what we are trying to find out from CO. If Marianne has a "P1" score. with a score like that, it will show us that the auditory nerve has been stimulated, and so should we help her to hear more "clearly?" or should we just allow her to be her.
I have a week to wait for the info back from CO. With that info we will make the decision...Anyway Marianne did great through the testing. She kept the probes on her head and they got a lot of great info on her. IT was well worth the 10 hour drive, crash and sleep, up and test, and drive home for 10 hour trip. Just look at how happy she is! She just loves life.
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| Rhetten was looking at all the cups... |
Scott took Rhetten on walk because I was in the booth with Marianne. (The booth was interesting. Speech sounds are amplified into the booth at different pulse rates at 90+ decibels for an hour and half. I had ear protection on, but after 45 minutes of it, it was a little annoying)...but I survived. Scott would have killed someone I think. (Sorry honey, but closed in spaces and you with annoying sounds? really??)
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| I lost my shoe! |
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| Just taking my walk! |
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| Yep, Big Man on Campus! |
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| What's in here?? |
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| Marianne, Mommy, and Rhetten at the Speech and hearing services on the Campus of Boulder CO. |
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| Say cheese! |
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| YEAH!!! Let's jump into the car and drive for 10 hours!! I can't wait! |
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| Mountains in Boulder |
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| See that interesting Rock sticking out? The close up was in the picture above. |
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| This is how I traveled: watching movies and sleeping. |
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| WOW!!!!!!! We are headed to the tunnel!!! |
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| Here is the tunnel! |
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| Yeah Tunnel!! I love Tunnels!!! |
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Hey dad, this is for you! Remember this cute face? Remember this happy smile? remember how cute I am? Please remember this because in exactly 6 hours I will be screaming at the top of my lungs to get out of my car seat, while you are driving on a one lane highway through a snowstorm having the biggest stress attack of your life! Just remember how cute I really am! Got it? Love ya!
