Well, he was examined by ABR and the diagnosis is 95db or worse. He gave no wave V response. Basically he is profoundly deaf in the frequency range covered by ABR (500-2500, more or less).
How high did the ABR test to? 90db HL maximum? He may have only 70db or even 50db loss at 250Hz. That would make a very big difference. I know a woman who has no hearing around 750Hz and above but her low frequency hearing is extremely good(10db at 250Hz and below, 50db at 500Hz) and she understands too much speech to qualify for CI. 60% of the speech information takes place at 500Hz and below. This is why I understand some speech with my audiogram.
Do not ask me how much gained was programmed in the HAs initially. Their idea is a number of programming session to gradually go up with amplification, to avoid bad reactions from him and the refusal of HAs (pretty common in small children). At the time of that audiogram, besides the amplification set, he reacted at that levels of stimulation. From that time the amplification has been increased significantly and we are going to have another audiogram in two weeks. I'll let you know!
Taking it slow is fine as long as you reach the goal of as much amplification as he can tolerate up to the maximum. Id watch the SPL/MPO rather than too much gain. Will his new audiogram be both unaided and aided?
The left ear is already more amplified than the right one. It is almost to the limit of the HA.
And does he still hear better in the right ear? His left ear may be dead or nearly dead. If you ever decide on CI, the left ear is the one to be implanted, not much residual hearing left to lose.
I will share the new audiogram, which will represent closely his actual situation.
He actually is fitted with that specific model! He has Phonak Naida V UP jr.
They will try transposition once we will identify with certainty any cochlear dead zone... It is very difficult with so young children, they cannot explain how they hear...
Doesn't the psychoacoustic tuning curve(PTC) test give an objective measure? I know the TEN test is subjective but works on adults and older children.
No, he does not speak yet, besides some very simple words, mostly onomatopeic. He is (we are) doing speech therapy three times per week and slowly showing some improvements in the sound perception at the moment...
And you have no idea of the time we devote to him at home..
If he can learn to speak clearly and understand 80% with
reading lips and has no problem communicating with others, would he still need a CI?
I know that. This is what push me towards considering CI. But I also know there are some people doing great with HAs and this cause my concerns...
Anyway, my impression (pure impression, no data) is that an average CI user can be comparable or better of the most of good-optimal HA users... You are a great performer, but you base your speech understanding on lipreading mostly.
Does it matter if one obtains speech by using their ears(listening) or using their eyes(lipreading) the information processed by the brain is the same. Both are vechles to input speech data to the brain. Both allow easy access to communication. Lipreading does have some limitations but we, the deaf are perfectly capable anyway! What are you expecting as an improvement over CI that the deaf aren't capable of? We are no worse than hearing people! Stem cells won't make me better, itll simply improve my hearing and allow my HAs to give me more access to sounds, consider it a convinence.
I know a woman, completely deaf, she does not use HAs at all, she relies completely on lipreading and she speaks perfectly. You cannot tell she is deaf until you try to call her when she is not looking at you.
That's because the deaf are just as capable as hearing people. The only difference is we lack the ability to hear which we easily make up elsewhere.
I mean, I know he can be perfectly happy with HAs, without, just signing, etc... I will love him anyway, he is my child and I think he is the most wonderful child in the world. I simply want to do my best for him. I am trying to have crystal clear idea before making any decision.
So why not wait for him to decide if he wants CI, stem cells, HAs or nothing? If you teach him how to speak clearly and read lips, it won't be "too late" to understand speech and speak. There are people born deaf who didn't hear much with HAs who got CI at 40 and understand speech as good as postlinguals with CI.
It is probable that he will really have the possibility to get stem cells in the future. Maybe he will be adult, but after all in 20 year he will be 22, still very young and that technology will be out at thet time probably... Fortunately it will be his own decision at that time. I will support him anyway. I am ready to do everything for him, also switch completely myself to sign language, no problem.
Do you plan to raise him orally or sign only? My parents raised my orally only and I even chose not to learn sign language as I wanted to focus on speech as much as possible while I was young. None of my hearing friends know sign and most deaf people can read lips just fine. I won't wait 20 years for stem cells, try 5 years maximum then ill get stem cells at whatever stage of development they happen to be at. He may be old enough as a teen to decide not to wait anymore and get stem cells.
However given how you get easily hyped up, and write the way you do-- I think you might be one of those people that would enjoy that book.
