Tuesday, October 9, 2012

another hearing aid chapter.

this hearing aid saga has been a long one.  filled with frustration, red tape, being dinked around (possibly for financial gain), and then there was today (although i guess i need to fill you in on the mri and results as well).
we saw an e.n.t. at the end of august.  he also scheduled an mri to look at the inner working of shilo's ears.  he had sort of wanted a c.t. scan, but i told him that after around 150 x-rays in her short life, that a c.t. scan would take a lot of convincing due to exposure to radiation.  he agreed.
the day of was fine.  it was strangely calm, likely because i've sat through six sedated mri's before, and this one, they weren't even looking for tumors.  so it felt, strangely normal.  about a week later the doctor called to give results.  not a nurse.  the doctor.  and he apologized that it took so long, but 'he read the report, and had to see the mri for himself because he was just having a hard time believing it.'  seriously, that is an AWESOME thing to hear about your child.
so shilo's right ear (which is the ear that has the worst hearing ability), the nerve between the cochlea (the bone that vibrates to transmit sound to your brain) and the brain was underdeveloped.  he had, 'never seen anything like it.'  and the other ear had some issues in the middle ear with some sort of build up.  we could possibly get that worked on surgically (we will actually have to have a c.t. scan to see what is in there before they can do anything) and it would help her hearing on that side.  so we took the results in stride. we had no high hopes of it being an easy fix.  and we made our appointment to get the bahas today.
so we showed up, and had been told to expect it to take around two hours.  it did not.  and the audiologist we saw is the same one who treated me like an idiot when shilo was inpatient.  when we left jason even said he didn't like her (as a doctor, i'm going to assume she's a kind person outside of work)-and he seems immune to the condescending and rude things that make me want to lose it on some people.
in order to get the hearing aid, they will have to apply for pre-approval through insurances.  as soon as she said it, i immediately asked if we weren't getting a hearing aid today (because i likely would have laid on the floor, crying, screaming, and throwing a tantrum).  but they give loaners.  so she showed us how to work it.  but we can only get one (even after insurance approval?!) until she is old enough for the anchors to be implanted-when she's five.  only four years and one month left for that....
and then they explained they would do a special test every time to see if her tubes in her ears were open so the fluid she had in her ears wasn't causing her any extra hearing loss.  i pulled out the name of the test (a tempanagram) and impressed everyone, and then had to tell her about eight times that she never had fluid in her ears (if you didn't reread, or don't remember, she was the doctor who insisted on tubes before she would do hearing aids).  the other 'surprise' of the day was the band for the aids.  we are not opposed to paying for whatever we need to for our children.  we didn't realize we would have to buy a band today in order to come home with the hearing aid.  it's a soft band, much like an elastic headband, with a hard plastic peice to attach the aid to.  anyone want to guess how much it cost us?  anyone?  $75.  i almost fell off my chair.  it's not so much because of the price (i'm aware that medically stuff gets marked way up because they know we don't have other options) but that nobody gave us a heads up before the appointment.  we did, personally, have the money to pay for it outright.  but i can't imagine being a parent who didn't, and having to say, no, we can't get what my child needed because we weren't expecting that expense.
so the big picture is: she has a hearing aid.  she still doesn't understand what she is hearing, because she has never done it before, and it will take a bit for her brain to assimilate the noises and such.  we are super excited about it.
the other side is, i feel torn at this point.  we have a follow up in november, with this doctor.  i plan on keeping the appointment-because she should get her actual aid.  but frankly, after that, i don't want to see her.  ever. again.  we have a few other options, but i'm not sure where to even go from here with those.

sooooo....we have at least one more chapter in her hearing aid story, but more likely many more as we figure out her aids, what to do with her left ear, and getting anchors when she's five.  for now though, here is a picture and some brief info on bone conduction hearing aids-or a bone anchored hearing aid on a soft band.
shilo in her hearing aid.  i plan on blinging this headband out, as well as making some big clip on flowers to cover the plastic look of the aid.
a bone conduction hearing aid, takes sound, turns it into vibrations, and conducts those vibrations (through the bone in your skull) to your cochlea-which then sends the info to your brain as sounds.  shilo's does not bring her hearing to a level of perfect (she is now at a mild to moderate level).  there is a piece we got with it that is hard plastic, that you can attach it to to test to see if it's working.  so we did play a little.  and it's crazy weird.  you can bite down on the piece and hear through your teeth.  sort of fun.  if you are interested in reading more than my amateur interpretation of how a bone conduction aid works you can go here.  or just google bone conduction hearing aids or bahas and read until your heart is content.


  1. Could Shilo be any more chubalicious? What a doll. She looks sooooo happy to be hearing!

    Also, if a doctor said to me 'I've never seen anything like this". I'd say something to the nature of, 'That's fine but I want you to know that I plan on searching for ((and will find)) SOMEONE who has seen and treated something like this before.'

    Keep it up~~ You're a great mom.