Lets chat about Sadie's sweet little ears. Oh those ears. We are at a point that more decisions need to be made in regards to her hearing, her future. Do we pursue hearing aids? Do we pursue cochlear implants? Do we do nothing? These are our 3 choices.
Since Sadie was born she has had multiple hearing tests. All different kinds. She has had sedated tests and awake tests, some formal and some were informal. They all gave us the same result, she is deaf. I have heard that it is mild in her left ear and profound in her right. I've heard that it is profound in both. I have heard that she has intermittent hearing. I have heard that she hears, but that her brain can not interpret what she is hearing, so it just sounds like noise in her head. You name it, I have heard it. (Before Sadie, I didn't know there were so many different kinds of hearing loss. I thought deaf was deaf. I'm sure there is way more that I haven't heard. It's crazy.) These are all the "professionals" opinions and diagnoses.
Then we have all the opinions and observations from family and friends that are around her frequently. Sadie can hear. Everyone agrees that she is hard of hearing, but everyone seems to think that she is hearing something. Why? because she will turn her head to find noises/voices (occasionally) and she will have "conversations" with you (occasionally), and she still makes a lot of babbling noises (which are supposed to disappear if a child is deaf). Sadie truly makes you believe that she can hear you. Is it coincidence? Is it that she feels the sound vibrations?
So one of the questions is why such a wide variety of opinions? I have gotten many of explanations, from many of different people. All their opinions make sense, but it only makes sense in regards to what their opinion is to what they believe she is hearing.
Here is what I think. I am her mom, who is with her 24/7 and know her better then anyone else in this world. This is also coming from her mom who knows a lot about the medical world to be dangerous, but not enough to be completely confident in my reasonings and explanations.
I think that all the hearing tests that have to do with placing probes on her head to measure brain waves as she "hears" noises are not accurate. Why? Because those tests are designed for people that have their whole brain. Sadie has 3 underdeveloped parts of her brain. They obviously don't work or work differently then yours and mine. I do believe that she is extremely hard of hearing. My two other girls can scream and laugh by her and she does not even budge. I also believe that she can hear at normal volumes because we can talk normally to her and she will coo and turn her head to look at us. So in my opinion, as her mom, who is with her 24/7, I believe that she has auditory neuropathy. Which is intermittent hearing and it is were she just hears noises, even if we are saying words to her. I believe that her auditory nerve randomly works allowing her to hear things, but not well enough to actually develop language and not often enough to convince everyone that she can hear something.
This is what I think, but I'm not an expert on hearing, just and expert on my daughter. I don't think that hearing aids (HA) are going to do anything. I think that they will annoy her more then anything. It will amplify the "noise" that she hears (and since the experts say she has severe hearing loss, it will be set at extreme loudness). I think that cochlear implants (CI) will not work because I don't think her auditory nerve is strong enough to make them work (plus if she gets a CI she will never be able to have an MRI done again because of the magnet in her head).
So at this point I just want to do nothing. I want to concentrate on teaching her how to communicate. Communication is way more important then hearing. So we will be using and teaching sign language. Of course there is a dilemma with that. What if she never has the mental capability to sign with us? What if I deny her the use of HA or getting a CI? Would those be better then nothing? What will her future communication be like? I honestly try not to live on "what if" and "think about the future" kind a questions when it comes to Sadie. I really want to live in the here and now. However, those questions creep up and bite my butt every once in awhile. I am still human and it is hard to not think about the future.
Oh those sweet little ears? What am I going to do with them?
Since Sadie was born she has had multiple hearing tests. All different kinds. She has had sedated tests and awake tests, some formal and some were informal. They all gave us the same result, she is deaf. I have heard that it is mild in her left ear and profound in her right. I've heard that it is profound in both. I have heard that she has intermittent hearing. I have heard that she hears, but that her brain can not interpret what she is hearing, so it just sounds like noise in her head. You name it, I have heard it. (Before Sadie, I didn't know there were so many different kinds of hearing loss. I thought deaf was deaf. I'm sure there is way more that I haven't heard. It's crazy.) These are all the "professionals" opinions and diagnoses.
Then we have all the opinions and observations from family and friends that are around her frequently. Sadie can hear. Everyone agrees that she is hard of hearing, but everyone seems to think that she is hearing something. Why? because she will turn her head to find noises/voices (occasionally) and she will have "conversations" with you (occasionally), and she still makes a lot of babbling noises (which are supposed to disappear if a child is deaf). Sadie truly makes you believe that she can hear you. Is it coincidence? Is it that she feels the sound vibrations?
So one of the questions is why such a wide variety of opinions? I have gotten many of explanations, from many of different people. All their opinions make sense, but it only makes sense in regards to what their opinion is to what they believe she is hearing.
Here is what I think. I am her mom, who is with her 24/7 and know her better then anyone else in this world. This is also coming from her mom who knows a lot about the medical world to be dangerous, but not enough to be completely confident in my reasonings and explanations.
I think that all the hearing tests that have to do with placing probes on her head to measure brain waves as she "hears" noises are not accurate. Why? Because those tests are designed for people that have their whole brain. Sadie has 3 underdeveloped parts of her brain. They obviously don't work or work differently then yours and mine. I do believe that she is extremely hard of hearing. My two other girls can scream and laugh by her and she does not even budge. I also believe that she can hear at normal volumes because we can talk normally to her and she will coo and turn her head to look at us. So in my opinion, as her mom, who is with her 24/7, I believe that she has auditory neuropathy. Which is intermittent hearing and it is were she just hears noises, even if we are saying words to her. I believe that her auditory nerve randomly works allowing her to hear things, but not well enough to actually develop language and not often enough to convince everyone that she can hear something.
This is what I think, but I'm not an expert on hearing, just and expert on my daughter. I don't think that hearing aids (HA) are going to do anything. I think that they will annoy her more then anything. It will amplify the "noise" that she hears (and since the experts say she has severe hearing loss, it will be set at extreme loudness). I think that cochlear implants (CI) will not work because I don't think her auditory nerve is strong enough to make them work (plus if she gets a CI she will never be able to have an MRI done again because of the magnet in her head).
So at this point I just want to do nothing. I want to concentrate on teaching her how to communicate. Communication is way more important then hearing. So we will be using and teaching sign language. Of course there is a dilemma with that. What if she never has the mental capability to sign with us? What if I deny her the use of HA or getting a CI? Would those be better then nothing? What will her future communication be like? I honestly try not to live on "what if" and "think about the future" kind a questions when it comes to Sadie. I really want to live in the here and now. However, those questions creep up and bite my butt every once in awhile. I am still human and it is hard to not think about the future.
Oh those sweet little ears? What am I going to do with them?
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