yes, my friends. it's another chapter in our hearing aid story. if you haven't already read about it you can go back and read the first and second parts to catch up. the piece of paper had now been halted to prevent someone from paying for something that should not be paid for.
in my first post i mentioned that the doctors thought that bone conduction hearing aids are what would work best in bringing shilo some degree of hearing. so i found a local doctor who said they could do them (if you remember, she can't do them-at least not what is needed for a very small child). however, shilo's left ear is slightly better than her right. she still can't hear us, but the testing showed less loss in that ear. so the doctor we saw locally said she thought she could bring shilo's hearing up into the normal levels. normal. i was SHOCKED. shilo has what is called mixed hearing loss-so it's both conductive and sensorineural hearing loss. from what i understood, with the degree, and the mixed loss, we would never see normal with her hearing. so we had a mold made of her ear and the hearing aid was ordered.
monday we had a follow up e.n.t. appointment for post ear tube placement. we knew they would schedule some sort of imagery testing to see if the conductive hearing loss is something that could be surgically repaired. and we knew he would be the doctor that sent the referral for her bone conduction hearing aid. so i asked him about the bhe (behind the ear) aid we had ordered. he said, 'if you try to bring her hearing up to a normal level, it will be extremely painful for her. she will never have normal hearing. she needs baha (the bone conduction aids) on both sides.
i left monday with my head spinning. two different e.n.t. doctors, and an audiologist at riley all said bahas. one audiologist said bhe. i talked it through with jason, and a few other people, and still just felt really uncomfortable with what our best choice was. do we walk away from the person giving us some hope of normal hearing? was she spewing rainbows and sunshine onto a situation because that's what she does? was she choosing the bhe aids because she would benefit monetarily if we chose to go with those (the other three specialist will not be doing her aids so they gain nothing from whatever our choice is). i don't want rainbows and sunshine. i want the truth. and if the truth is that a bhe aid will bring her to the same level of hearing as a baha, then why would we go with a hearing aid that is tons more work (remoldings every time her ears grow-which is a lot on a small child. feedback issues. so much more work) instead of the one that we can use and will stay the same as she grows.
so at the end of the day i decided to send an e-mail out to my father in law. he's an audiologist. he works at a v.a. hospital, which is obviously different than pediatrics, but he's smart, and i know he will give it to us straight. and he did. it turns out that we are going with the baha aids. i wish i had known in july what i know now. i would have already had a referral and our appointment would have been much earlier.
so it looks like shilo may get to hear by her first birthday if all things pan out well-and she will have an mri in early september to see if they can figure out what caused the conductive hearing loss. i also get to figure out how to make a diplomatic attempt at saying to private audiologist-what were you thinking? because two e.n.t. and two audiologist have all said the same thing-the opposite of what you are telling us. are you going to continue to stick with what you originally said or do you want to change your story?
i know that some doctors either believe that patients are uninformed or think that patients should take what they say as 'word.' we believe that information and intelligence are available, and that we will make the choices we believe are best for our daughters, even if it means fighting with a doctor who made a really poor call.