Yes the fact that they will help Ellie hear better is great... However apparently more powerfull hearing aids, means that the hearing aids have to be bigger. The bigger hearing aids are not a problem. When you have a child that needs a glass eye, AFO's, leg wraps etc, you get used to all the "extra things" your child needs.
The problem is that bigger hearing aids mean they do not stay totally put behind Ellies ears. As Ellie is still not sitting and mainly on the floor, and does not stop rolling around. This means that the hearing aids can come loose from behind her ears making it easier for her to remove. The solution that we have been given for this is ..... Double sided tape!!! I was horrified when I was told this. I dont mind my daughter having to have a glass eye, hearing aids or AFO's but the thought of having to put double sided tape on behind her ears... I really dont like. Not only does it not pull at her hair, but it looks like it is making her skin dry
The second thing about the new hearing aids is that when Ellie leans on them (which she does alot as she moves around on the floor) they SQEAUL....!! This drives me insane, and I can only imagine that it cant be too nice for Ellie.
I expressed my concern about this to the audiologist, however he stated that as Ellie needed more powerfull hearing aids.... more powerfull means bigger.... Are you serious??!!??!!
What I dont get that in this day and age, with the advancement of technology, that a child as little as Ellie (and Im sure there are smaller kiddies than Ellie that need hearing aids) have to put up with squealing hearing aids and double sided tape....!!
Ok vent over...!! We have a appointment in 3 weeks time, so I am going to give her hearing aids a really good go between now and then... as yes they are making a difference, I do see her respond a bit more.
But I was thinking... the hearing aids are obtained through a government funded business that provide hearing aids free of charge to children and pensioners. Maybe these are the only hearing aids that the goverment will fund?? Maybe there are other smaller hearing aid options out there but not funded by the government as they are to $$$
Hmmm just a thought... Might need to do some research as I am not keen on "double sided" taping Ellie every day
I can totally understand your frustration. Kaylee's ears are too small for any sort of traditional hearing aid, so she needs a bone anchored hearing apparatus-- basically a headband with a big box on it to help her hear. Ironically, she does not even have a hearing loss-- she just has fluid in her middle ears that cannot drain due to her extra small ear canals and the piping in between that, in typically-developing children, drains on its own. This device is super expensive, and like Ellie's, every time she lets her head rest on the floor, it causes an obnoxious squealing sound that is akin to nails on a chalkboard.
ReplyDeleteI hope that you can find a better solution for Ellie...at least they are provided free of charge. Kaylee's will cost us $2700 out-of-pocket after insurance covers their pittance share.
Lots of love! xo
Have you tried some sort of tape made for skin? The only thing I can think of now is Kenesio Tape - which is made to help strengthen muscles... but it is made to last several days. I'm not sure if this will work. OR.... can you fasten a headband? What if you put velcro on the back of the hearing aids and then velcro on a headband... and put the headband under the hearing aids? Would this be an option? Just guessing .... trying to think outside the box :) Good Luck!
ReplyDeleteI can feel your pain, lol, we use to use wig tape for Jasmines hearing aids to keep it on and it would leave sticky stuff on her skin all the time, BUT it worked! Also she went from the tinest cutest pair of hearing aids to a bigger more powerfull one as well, THEN to the cochlear implant which is not only bigger than the biggest hearing aid but also ha the coil that magnets on to her head! POOR KIDDO! And yes Jasmine has a vp shunt inside her head and wears glasses! Lots of head equipment on this little one, lol. Just an FYI, if the hearing aid is squeeling that means it is not in properly which means that Ellie will not be hearing properly, which then means it more than likely will not bother Ellie, just you, lol. At least they squeel so when they fall out you can find them, the cochlear implant doesn't have that and when she hides it its impossible to find, lol.
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