Thursday, February 25, 2010

Hearing Aids Report

To be honest, we were very disappointed with our visit to Duke this week. Neither CHKD or Duke has been able to get a clear idea of Gwyneth's hearing loss. Tests have shown differing results, and Gwyneth has developed a fear of the animatronics in the sound booths (she's literally not scared of anything but animatronic animals), so the only way we're going to get that clear picture is to do another Auditory Brainstem Response (ABR).

Because of the lack of reliable data, the audiologist had no choice but to set her hearing aids to a "conservative" setting, basically meaning, they're set at a low volume so that her ears won't be damaged (had they been set too "high"). We already know that she has severe hearing loss in her right ear, so we can assume that her right hearing aid is not going to help her much at this point. We also know that she has very little hearing loss in her left ear, so we're also assuming that her left hearing aid is not helping much.

Regardless, it is great to finally have the hearing aids and be able to get Gwyneth used to wearing them. As you can see in the post below, Tricia chose pink for the "behind the ear" to match her glasses. The custom ear molds are sparkly (not sure how or why).

Gwyneth was/is not happy about letting us place them in her ears, but once they're in, she doesn't seem to mind. She hasn't shown much reaction to wearing them, and it doesn't appear that they have made any difference with her ability to hear. We understand that it may take a while for her brain to readjust to hearing new sounds, but again, we're fairly certain that they're really not doing much for her either way at this point.

We're hoping to have the ABR and the readjustment of her settings scheduled sometime in the next few weeks, and that, at that point, we'll really begin seeing a difference and some progress. In the meantime, we'll help her become acustom to wearing them.

Here's a video shot a few minutes after she was fitted for the first time...not much to see except for extreme Gwyneth cuteness.

video

Nate

27 comments:

Brody's Mom said...

That is definitely some extreme Gwyneth cuteness! :)

Queen Mommy said...

Hearing loss can be such a difficult thing to gauge. When we were going through it with Lily (before she had the T &A that made her hearing "normal"), the ABR showed her to have bilateral moderate-severe hearing loss; however, we did not feel it was *as* bad as the test had shown. The booth test (which she thankfully was not afraid of) showed moderate hearing loss in both ears. The trouble we had with ours was less about diagnosing the hearing loss and more with the fit of the ear molds. It took numerous tries and 2 different ear mold companies before we had 2 hearing aids that fit at the same time, and by then she'd had her tonsils and adenoids out and seemed to be really *hearing* without the aids.

All this to say, I'm sorry it was a less than desirable experience for you guys, and I hope the next ABR gets you accurate results!

Marsmile said...

Man, Gwyn's emanating such cuteness! Melts my heart!

Sorry that the process of determining the exact degrees of hearing loss is difficult-- it can be in little kids. With time and patience, it will be figured out. I would imagine those animatronics are scary!

Best wishes with the whole process and hope you'll know for sure soon!

Amy said...

She is so sweet...and pink is a good color on her!

Aggiema (Michelle) said...

She is a doll, very cute. If I am understanding your post correctly, Gwyneth has one good ear and one not so good ear as far as hearing goes, that being the case then of course the reaction to suddenly being able to hear would not be as drastic even if the aids were set properly. The earmolds probably hurt a little bit which is why she doesn't like for you to put them in, the fit has to be tight to avoid feedback and it is uncomfortable for a few days. I think once the aids are set properly you will begin to see encouraging changes. Blessings!

ShEiLa said...

Regardless of the amount of hearing loss... I just want the doctors to do their best to help your Gwenyth.

I can't imagine how hard it must be from Gwenyth's point of view... to have tests that she does not understand.

Miss Gwenyth has had a whole lot of adjusting and she is such a trooper.

ToOdLeS.

Tara said...

Gwyneth is so adorable!!

I can only imagine the frustration! I woke up one morning when I was 31 and had no hearing in my right ear. After months and months of doctor visits, they still can not tell me much other than I have "sudden hearing loss".

I love the pink!!

Amy Anderson said...

Mr. and Mrs. Lawernson,
I never liked the tlking animals eaither, even though I was 6!
They FRIEKED ME OUT!!!!!!!!!!!
I seriously HATE THOSE THINGS;)
Love the pink, looks great on her!
Love,
Amy Anderson

Carol said...

Yep, EXTREME cuteness. These little clips of Gwyneth cuteness just make me smile long after they are over - thanks.

Hope next week brings some progress - I am sure you are so anxious to for the aids to start doing what they are intended and to capitalize on all the good work Gywneth and you guys have done - she clearly comprehends a lot despite the hearing loss.

Becky in VA said...

I dose of "extreme Gwyneth cuteness" is just what I needed today. Thank you!!

Love to all.

Glen said...

Please don't get discouraged. It is all a process. Even once Gwyneth can hear well with her hearing aids she then has to "learn" what it is that she is hearing. She is very young and will catch on quick once she begins to hear at her optimal level. She also looks fabulous in her sparkley pink hearing aids.

Lori

leinolife said...

Love the video! So good to see that sweet smile.

leinolife said...

Love the video! So good to see that sweet smile.

Susan said...

My daughter has a trach and a mom on our support forum posted this Flinstones video of simulated hearing loss. Thought you might find it interesting. http://www.youtube.com/watch?v=TD5E88fFnxE I hope you're able to get the aids adjusted and she takes well to wearing them.

North Carolina Mom said...

Wow, cute AND patient! What a good girl!

Anonymous said...

I am so sorry. It sounds like things are going more slowly than you'd like. But dang...she is darling!!!

PandJ_L said...

I have been following your blog for quite some time and I think I have only commented once (sorry).
Firstly, Gwyneth is the cutest kid on the earth!
About the hearing tests. I worked with a little boy and took him to many hearing tests (he wore hearing aids and had severe hearing loss in one ear and moderate in the other). How they tested his hearing is that we would play what we call a "listening" game. Basically what it was is some sort of game, I will use a puzzle for example, that before he could put the piece in the board, he would have to hold it up to his cheek and wait for me to make a sound (while covering my mouth)like aaahhh or eeeeee or oooohhh I would also change it up with how soft or loud the sound was. When and only when he heard the sound would he get to put the piece in the puzzle. At the begining he would try to put the piece in before I made the sound. I would use anything to make this game. I would use his bath toys, before he got to put the toy in the tub he would put it on his cheek and I would make a sound and then he got to throw it into the bath water. The games are endless... We would practice all the time so when the time came for his hearing test he knew to listen for the sound. All this to say is that testing this way got a pretty good idea where his hearing was.
I hope that all made sense... The boy that I worked with when I first met him had no means of communication and would get frustrated, after 3 years of working with him he was reading at a grade one level and he was 6 years old.
I myself am wearing hearing aids as well and just got fitted with new ones and am really impressed with them. All though it took two different companies (I didn't like the sound of the first one) I finally have aids that are enjoyable to wear, the fit is great and my husband like the fact that I actually wear them .

By the way I really like the colour choice! Pink is the new black :-)

applesofgold said...

EXTREME cuteness! Thanks for sharing your daughter with the world :) You are so blessed!

The Hull Munchkins said...

She is adorable!!! Love the pink. Our little girl got sparkly ear molds too and hot pink aids.

Since our dd is also blind the booth testing is very difficult to accurately assess her hearing. The ABR mostly gives a very wide range of hearing loss. Abby's was b/w moderate and profound... so we really don't know for sure what her loss is. It's been a trial and error approach with her aid adjustments, watching her body language and reactions to sounds... very subjective. I know how frustrating this is.

But how great that Gwyneth is making sounds and obviously hearing some of what you are saying to her!! Good start. Even a little amplification is better than nothing until you get some more defined results for her hearing.

What a cutie with her glasses and aids. You guys are doing great.

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Jennifer said...

Extreme cuteness doesn't even begin to cover it! She's so precious!

Karis said...

She's such a cutie!

Carol said...

She is so cute and pretty! Love those big smiles.

Sonia said...

I haven't left a comment for a very long time. My son is a surviving twin born at 23w0d. Just wanted to leave a note about hearing tests. First off, Isaac couldn't really do the "hearing game" Panda mentioned till he was around 3 years old. When we first did the ABR test, Isaac showed only mild hearing loss. But we did a behaviorial test with the animaltronics - he wasn't that cooperative but it did show some mild hearing loss. We then did the ASSR test which tests a much broader range of frequencies than the ABR test and we learned that Isaac has suffered moderate to severe hearing loss in the lower frequency ranges. We then fitted Isaac with hearing aids which happen to be quite helpful in the lower frequency ranges (I was told that hearing loss in the higher frequency ranges can't be helped as much by hearing aids and cochlear implants would be more helpful for that). We got his hearing aids about a year ago when Isaac was almost 3 years old when he was basically nonverbal. (Its a long story but we basically didn't find out about his hearing loss till about a year or so ago because we were living in Japan and the doctors there wouldn't test his hearing so we didn't learn of his hearing loss till we first did a hearing test when back home visiting the US and confirmed it after we moved to HK.) He was just assessed recently and his speech has caught up with his peers though he has a lot of articulation problems!

Anyway, please feel free to email me at rachel and isaac at gmail dot com if you have any questions. Praying for you guys!

Sonia

Sonia said...

Sorry I just reread what I wrote and I meant after his first ABR test, we did the behavioral test and the results were inconsistent with the ABR test (indicating that his hearing loss may not be mild). So we did the ASSR test. ABR and ASSR were both done under sedation. Actually come to think of it, Isaac couldn't do the "hearing game" till recently so more like 3.5 years old.

Sonia

Amy said...

This is just adorable. She and her animal sounds... too cute! It's amazing to watch her grow.

the bennetts said...

Nathan

I've read your blog for a long time, love it!

I know you guys are all with Duke on everything and don't want you to think I'm trying to butt-in... My daughter is profoundly deaf and until she got her cochlear implant she was at UNC's pediatric audiology department- it is considered one of the best in the nation. I know Duke is, for lack of a better word, phenomenal- but just wanted to give you another option for the hearing loss side of things. i have the director of the pediatric audiology departments number at UNC- her direct line if you would like to set something up. They are unbelievable up there.

If you (or Tricia) ever want to talk about anything hearing-loss related please shoot me an email. Would be happy to encourage you in any way possible! And don't worry, it won't bother me if you stick with Duke, just wanted to offer a second option if you needed it!! blessings to you all!

-emily
bennett (dot) emily (at) hotmail (dot) com