We did have an appointment with a leading ENT surgeon who specializes in CI.As we got his contact through a friend and we needed some place and reference to start with, we got her aided and unaided audiograms there. Prisha has been trained very well and I have full faith in her as far as my training with her goes. She has been conditioned so well that she was a surprise for audiologists in India since she was 2.5 and now here in Germany too.The audiologist was very impressed with the way Prisha conducted herself during one test after the other. She lost it a bit when for the BERA , she was wired up, but she stood there.
Seeing the aided audiogram with this clinic was SHOCKING. According to this one , Prisha's aids were just a bit tuned to barely hear.Her right showed an average of 75 db and right was 110 db average.When we met the Doctor, he said Prisha was not hearing too well with HA and would benefit only with CI.But when I asked if she wasn't hearing, how had she been able to pick up so much last 3 yrs (they were tuned then last), he said since is intelligent!!! But I feel if she was not hearing, what good would be her intelligence?? To be able to speak intelligent stuff or even day to day things, isn't hearing required?Does he mean that all deaf people who have no speech, are not intelligent? Are those deaf people,who make those paper bags and doing vocational training to earn their living, less intelligent?It is just that they have no speech and language that is required for education to do the big white collar jobs.Given a chance of oralism, am sure , they too would hold big jobs too.When I asked him if the HA could better her hearing capacity, he said no, as the aids have a limit and these HA have been tuned to the best.I was so depressed but I was convinced that as usual, I was being cornered into thinking that it was only CI that would benefit.He said he could not understand her speech, but my friends say they never need interpretation from me for her and nor do her friends, even those who don't speak the Indian English have no problem.I was convinced that this place was not for me and so left the place.We have seen some bad cases of CI and are convinced, the complications are not meant for US.
Audiologist at Geers was impressed with my contraption for securing hearing aids,she also gave one to us which is close to our design.Not bad!! |
Reward for being so attentive and good |
Next, the audiologist plotted her on a graph and then she made new settings afresh according to her.But Prisha is very sensitive (thank God, I keep pushing her into listening and keep talking and questioning her) and said she was hearing loud and soft like waves. We decided to take a break and go around a bit for her to get used to the new settings. But she looked SOOO miserable and kept saying , she could't hear. So we went back and asked and were told that since Prisha was used to her old settings, the new change was too much for at one go and all changes need to be made slowly.So old settings, increase of 10 db and hey presto, Prisha was happy!! She was hearing clearer louder and better.Both the aids were brought closer to the speech banana which was far away till now.we need to go back on Friday and the lady would then raise all the frequencies into the speech banana and so she would hear even better.I had tears welled up in my eyes.We did the test for direction too with the 5 speakers in different direction and Prisha scored on all 5.She was doing it for the 1st time and was a bit confused but her eyes would 1st look at the speaker and then her mind made her look around not being to sure of herself.2.5 hours we were there and she gave in her BEST. I was so proud of my little girl and she was loaded with goodies from the clinic.The audiologist complimented on our team and she said she had never seen this kind of work in her career.She has been long in the field and was surprised at our work where Prisha has been conditioned well, my husband looks into the technical part and I am into training Prisha.She was surprised when I did my own tests with Prisha from behind her to understand her new settings and Prisha scored 10/10 on it and she was not lip reading me at all.She said in her long span of job, never has she seen mothers working this way with their kids here in Germany.I was humbled and thanked her immensely for her very involved work.She did such a fantastic job and did it with so much dedication and I am so glad I have someone we can trust.
Yesterday after a long time I slept well, ate well and just chilled out.I read the stories to Prisha without having to be loud.I did not have to shout across to the room as she responded to even softer calls.I have submitted the aided audiogram and would the final one soon to the school. I would be scanning all the audiograms on my blog that I have till date.Huge differences but it would be able to show how alert parents need to be.
Wow, what a huge difference in audiograms! I am so glad you found an audiologist to program Prisha's aids in the right manner, and it sounds like she is doing much better with the new programming! We know Nolan's aids are not set appropriately, so we are going to a different audiologist to get confirmation on his hearing type and levels (his UNaided hearing is only moderately severe, but his AIDED hearing is in the moderate level- it should be in the normal range)!
ReplyDeleteThat's fantastic that she's finally getting aided properly!!! The thought that an audiologist would deliberately under-aid her just to push you toward a CI, or that she would withhold information or audiograms from you, is disgusting. What is she in the business for??? Obviously she doesn't care about actually helping people, just making money or building up her own ego -- you gotta wonder, but in any case it makes me very angry. Some people say that we have too many lawsuits here in the US, and there are a lot of frivolous ones, but at least medical practitioners have a very strong incentive to act ethically -- because they'll get sued otherwise. That kind of malpractice would never be tolerated here.
ReplyDeleteJulia, I always fought back and that is one reason she always she wasn't good to me.She changed it deliberately too.India being so huge,its difficult to get enough people who would fight. Too many problems and they flourish as people are too busy fighting their own battles.I plan to take it up in my own way.She cares JUST for herself and money and everybody knows, but have fewer options and most are hand in glove with each other.
ReplyDeleteLeah ,I suggest you should call up your HA company who would guide you to their agents who would do a through job. I plan to give details of our tests and the plotting so people can see different graphs and understand what can be done. It is possible to tune HA into the speech banana but it just needs more time and visits.Had it not been for Mrs. Hudlikar, I would not have been able to be so prepared.Prisha being so well trained made a huge difference.She is very sensitive to sounds, i realized. Thank God, we were very hands on with her.And do it fast,as delay gets you nowhere.I wish we had done this earlier, my effort would have been halved and results would have been doubled.
rouchi, you should join this site
ReplyDeletehttp://www.alldeaf.com/
they have alot of people that can give you alot of information on CI
and they have people wearing them right now
maybe you should post up your problem in the right catergory of the message board!
P.S. I'm Sarfarigirl2011 on this site
Hi Emma, thanks for your input.I have a very clear picture of CI.I have no doubts about its clarity but I am very sure, I do not want any intrusive procedure for my daughter and would wait for maybe stem cell to take over in future.My problem is faced by many in India and it is a whole system!! I am sure of my path and though it is rough, am satisfied with it.
ReplyDeleteam just so glad for prisha and you.
ReplyDeletenow simply chill
:)
you need that