We're returning to the dentist on February 4 to have Nolan's' tooth fixed and to have sealants placed on Matt's permanent molars. I didn't take any pictures at the dentist, so I'll post a picture of Nolan having fun on a recent trip to our local ski hill:
Nolan's hearing has been questionable over the past few months. He does hear with his hearing aids, but he has to work to hear. His speech teacher and teacher of the deaf have noticed some regressions lately - particularly with the soft sounds like /s/ and /th/, in addition to the loss of the /ch/ sound (he pronounces "chair" as "share," for example).
I took a video of his recent hearing difficulties to show to our ENT (transcript follows):
[Transcript]:
Me: Nolan, who's winning?
(no response)
Me: Nolan, who's winning?
(no response)
Me: (loudly) Nolan, Nolan - Hey, buddy!
(Nolan looks at me)
Me: Who's winning?
(Smiles and has no idea I''m speaking)
Me: (louder): Who's winning?
(Still can't hear me and imitates me covering my mouth)
Me: (loudly) Who's winning?
Nolan: What?
Me: Who's winning?
Nolan: What was running?
Me: Who is winning? Who's winning the game?
Nolan: Ruining the game?
Me: Winning. Who's winning. Are you winning, or is Matthew winning?
Nolan: I'm winning.
Me: You're winning? Good job!
I was about 6-7 feet away while taking this video. There was some background noise with the TV, but the volume was low. He doesn't hear soft speech at all with his hearing aids. Our audiologist refuses to do aided audiograms, and I know this child is not amplified appropriately. It is like pulling teeth to get any aided testing performed at all for him. I would give my left arm to have Jane Madell or Carol Flexor work as his audiologists.
In any case, we are having another independent hearing test performed on February 13 at Buffalo Children's. This time, we're requesting aided testing and open-set speech recognition. The audiologists at Children's cannot adjust Nolan's hearing aids, but at least they can tell us if they're not set appropriately. Nolan's hearing in his right ear is solidly in the severe range, and his left ear is nearly there.
10 comments:
Oh Leah, that's so frustrating! Hope you can get a more cooperative audiologist. Clearly he wasn't hearing you, in the video.
Julie
Ugh, it is terrible that you are having such a struggle with your audiologist. What is going to happen when/if Nolan becomes a CI candidate? Do you have someone local who is going to be able to work with him. I think they are now recommending implants at a pure tone average of anything more than 65 db.
yeah, he definitely needs an aided hearing test, that will definitely tell how much he's hearing with with the hearing aids. Why would his audiologist refuse to do this? Makes no sense to me. Hope you get some answers and can get his hearing aids taken cared of.
with his hearing aids, how much should he be hearing? Pre-CI I was in the 55's-70's range with hearing aids and STILL borderline. Luckily the CI team agreed to implant me.
I have no idea why his audiologist won't do aided testing. His hearing level SHOULD be easily accommodated by hearing aids, but he clearly needs an adjustment and not simply the settings the DSL program recommends.
Melissa W., aided ranges of 55-70 dB are no longer borderline - that's entirely below the speech banana. The candidacy requirements are severe-profound hearing loss for those over the age of 2 (and under 18) with a low percentage of word recognition scores (I don't have the actual FDA guidelines in front of me). Some centers are more liberal than others.
Melissa, (Miss Kat's Mom), it does look like a matter of "when" rather than "if." We have new insurance so we may try Cleveland or Pittsburgh, even though they're three hours away. At least Pittsburgh is an easy (toll road free) drive. I'm pretty sure all of the "local" CI centers are conservative, though, so he'd have to drop to profound in the highs to qualify.
He's so cute! That is a great video to illustrate what is happening. I hope the new hearing tests give some clarity for the right way to aid him!
This scene is exactly how we experienced conversations with X until he got his implant. For more than two years, we witnessed him (and so did his teachers and therapists) NOT hearing or responding appropriately, and still we couldn't get the implant. Thanks goodness we do have a compassionate and open minded audiologist fight on our behalf. This video was hard for me to watch. Trying to imagine how you feel after your years of hard work - he can read and write already!!! So interested to see where this goes for you and Nolan. xxx
This scene is exactly how we experienced conversations with X until he got his implant. For more than two years, we witnessed him (and so did his teachers and therapists) NOT hearing or responding appropriately, and still we couldn't get the implant. Thanks goodness we do have a compassionate and open minded audiologist fight on our behalf. This video was hard for me to watch. Trying to imagine how you feel after your years of hard work - he can read and write already!!! So interested to see where this goes for you and Nolan. xxx
http://www.audiologyonline.com/ Miss Kat's school's head audiologist (Lisa Davidson) discusses CI candidacy. She says that even at 40% open set recognition, she thinks parents need to look at a CI.
Please remove my comment. I suggest you get out of buffalo if you want to find a good pediatric audiologist. The ones at both BHSC and CHOB are outdated and behind the times. Your son should be getting aided testing every visit, including word recognition and aided ling sounds. They should also be looking at his SII and be using some tools to get information about his auditory development.
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