Naida III or IX

     We have been using Naida IX last 2 months and started to realize that we were all talking louder and there are a lot of mistakes she was making in her speech.We keep postponing it to maybe getting used to or just her being tired.But last week got us on our toes when during a conversation my husband asked Prisha if she knew her name and she said no.We asked her 5 times each time a bit louder and she said no.It was also from quite close too.So we surprised and asked her a bit crossly and she said , she knew her name but we were talking about "game" and she did not know it.I was agitated at this and took the appointment for her with the audiologist.She too felt it was not possible that she could make such mistakes with Naida IX.So I asked her to take the puretone audiogram with both of them.She is trained well to respond to sounds and I knew she would give accurate results even though the change is too quick.
    Prisha was asked and given instructions and we started.The IX gave her responses at 35db and when we put the III her responses are at 20-25!!Why is there such a huge difference?Mrs.W was surprised too.When we had switched to IX and had taken her audiogram for it , it was at 35 and she had felt that maybe the responses of III at 25 was a shear fluke.But now she too saw that Prisha is very accurate with responses.She made some manual changes in IX in the channels , as normally the HA programmes itself automatically.But the responses showed just a 5db difference.So now she is calling up Phonak and asking them about this issue.I have a feeling we may have to stick to III.We are now using III to see her responses at home with them.She does tell me they are louder and clearer!!?? Am confused as hell and just hope we get the best HA for her.Have been so caught up with various things that my blog has been sitting on the back burner.And Mrs.Hudlikar did tell me that there are people who are a bit upset about me not being regular,am sorry about it but a small comment and query left behind by them would surely motivate me to write more appropriately and regularly.Itna to banta hai!!!

Update on Naida IX

       Since we got the new Naida IX, we have been noticing all the changes in her hearing and all things around it.I was back from India after a week and had just got the new aids before leaving.Once back home I realized Prisha was talking loudly again and was asking me things again or "not listening well".So we did go last week and had got filters changed but still this week, I felt she was listening as well as when she had got Naida III.We went back, got her new mold for the left ear and then decided to do her puretone audiogram.While the test was being done, I was a bit taken aback as she was not responding to many tones.My heart just started to sink.After the test the result was not too good.She was hearing at 35db when earlier she was at 20db!!Mrs.W was surprised too.She asked if Prisha's earlier tests were done at about the same time, but those were after school when she was really tired.And these days she has holidays.So that was ruled out.then she thought it could be back ground sound suppression.In India, our audiologist had switched that off and over the years Prisha had learnt to distinguish on her own the various sounds and had learnt to pay attention to voices even with amplification of only 60db.So mayb, just maybe, with Naida IX she is not able to hear better with suppression.So she switched of that.But still no effect and so she has now amplified by about 15 db for her to hear better and we are finding that we now have to talk softer and Prisha too is softer.So we observe next one week and next Friday we shall go again and see what changes need to be made.We have to still find out why was she hearing better with Naida III.Is it because Ix has more channels and so the tuning makes the peaks and gains flatter?We would find out answers to our questions soon.We trust the company a lot and am sure they would make sure Prisha gets the best help possible.

Prisha has new hearing aids

At the portfolio day in school

Good work done Prisha,we are proud of you

   I needed to do this post long back.But was waiting do just see the outcome and not feel too pleased at the beginning.The audiologist at Geers had told us she would try new hearing aids Naida III from Phonak in the left ear to help her hear better. Mrs Zellhorst had already increased her hearing capacity to maximum with the Siemens Artis but she needed to change and do better with her hearing.But when we reached there she said (I too was of the same opinion) she would like to change for both ears as the same group hearing aids make for better hearing.So we had Naida III for both years, which are capable of compressing high frequency sounds into low frequency range.So they do not miss out anything and are great for the hearing loss.
   So 15th of October it was , and what a day!! Prisha was given new hearing aids, molds and tubes and they were already tuned to the required levels.The moment we switched them on, prisha just opened her eyes wide.She looked a bit shocked if I could say so.We asked her how they were, she said good. Then we started her puretone test.She started to respond so well slowly that Mrs.Z too looked amazed.She signalled my husband to show no response on his face as that can affect the way the kids respond too.I could see with the corner of my eye, how happy and emotional they looked.I could see their eyes slowly turning misty.After the test, she looked so happy and proud and I loved the fact that Mrs.Z was so involved that she seemed a part of our happiness.We love you Mrs.Z!! She tuned it so well that her aided audiogram was at 20db!!!!Prisha was actually hearing such a vast spectrum and that too without our being loud! It was 1st time in her entire hearing age! We all had tears which we tried to hide.Prisha too smiled shyly and said she was hearing very well with the new aids.On the way home she was so tired and wanted to sleep in the car.She started to complain to us that she couldn't sleep as the sound of rain was disturbing her! We were so happy at this complain and just enjoyed that moment.Next few days we started to observe her and we need actually not strain our voices. Which was such a relief for us.I then realized that just because I was loud and so focused on her speech and language , she was able to pick it up inspite of the low amplification.I will follow up on it and will not rest till I question my audiologist back in India.Was it done on purpose, so that out of frustration I would consider CI , which has been a case in India with many?I would take this up seriously.
   We have had to many changes since then, the mold was giving trouble and we went to correct it and small changes with the gains.And then we had a set back, Mrs.Z fell sick and has to go through a surgery and may not able to come to work this year. We have been praying for her health.She is such a lovely person and kids love her and so do we!
   Prisha has been hearing pretty well in class.The teacher at school are happy and say she is very attentive.We too worked hard at home to put what she had lost in so many years.She had issues in school as he wasn't hearing enough and plus concepts being new, accent to deal with and to top it our laid back attitude for 4 months in our transition here, took a toll on her language.We have been working on her slowly and steadily last 6-8 weeks and are seeing results.She is reading, writing and using new vocabulary.I had kind words pouring in from the German teacher,Art teacher,Drama teacher, where they told me she was very focused, attentive, good eye contact, good concentration and they had no issues with her.Which was great for us.We also had her class portfolio last week and we saw her work.Her maths was new to us and so we could not do any support from home, but in her unit of inquiry, we saw a huge change.Her weekend news was good to see as we revised that from home.There was a page in the beginning, where she could not say a word and the teacher just about could not make her a thing, to her relating and teacher writing out and she copying, to her copying from the board to now she writing the whole week end news by herself! To add to it , her drama teacher came in to us and gave such a positive feedback.She said prisha is a beautiful child and she gives undivided attention,quick response to actions and vocals.She was skeptical about her response initially when she knew about her impairment.But she is thrilled at the way prisha follows all instructions spot on and is very expressive with herself and she told us we must continue what we are doing with her.That was great news after the very very depressing news from school 6-8 weeks ago.From rock bottom, we had climbed up.
   Yesterday was her parent teacher conference.We were going with not too much great feedback from the school.We were surprised, as the teacher gave a great feedback. She said, prisha was very attentive, caring,happy child who loves coming to school ,extremely hard working (who would know it better than us) ,followed all instructions and had made a huge leap in her understanding and comprehension and literacy skills.She said we needed to now just fill the gaps here and there and work on her being able to work on her being able to express herself in her own words and longer sentences.She needed to able to summarize the stories in her own words and sequences.She gave us tips on that and she also agreed to meet me every 2 weeks to give me a feedback and things to work on her which was fantastic.She also said she was willing to give Prisha the required push too and help us reach our goal, which is total integration by next June.She also told us that, a speech therapist comes to class everyday for 15 mins to help Prisha understand where required and if she felt she needed more focused work,Mrs.K took her separately in another class alone.We have now all agreed to work in better co-ordination with each other. I am very pleased with my meeting yesterday and hope to keep climbing up from the rock bottom that we had hit 6-8 weeks ago.So, we "Keep Walking".

Another visit for aided audiogram

   Friday was the 2nd visit to Geers for tuning Prisha's hearing aids.I explained to Prisha that she needed to pay attention to sounds so that Mrs.Zellhorst could tune her aids better and she would hear well.Fortunately Prisha's autumn break started and so she needn't be rushed from there to school.She loves going to school and hates it if we miss it.
   We received the same warm welcome and Prisha was asked to sit and make herself at home, which she did with all the toys kept for the kids.She got me the kaleidoscope and was so fascinated by it.She asked me what it was called and I helped her to learn the new word.To this ,we got a "wow" from Mrs. Zellhorst as she said it was wonderfully corrected and she said it very well.I have to see still how speech therapy,a very important part of hearing impairment, is done in Germany.She is amazed at how quickly Prisha takes corrections,responds to sounds while doing pure tone and audiograms and is so well conditioned that she is able to tell how she wants her settings and is sensitive to changes immediately.I thank Alaka ma'am for it!!
    Prisha was then taken for her pure tone test again and we started with the test.She performed very well and responded to all frequencies very well.First it was decided not to change the settings but on 2nd thoughts some more adjustments were made.Her binaural aided audiogram now is at 40 db at 1K and 2 hz , 50 db at 4K and at 60-75 db for higher frequencies, which is great.We need not strain.She responded to all of it Audiologist is now suggested us to change the left HA as it is tuned to its full capacity but more changes are given in that ear, it would support her right ear better.As of now it only helps in directionality.So she is going to make changes slowly.A new HA from Phonak  would be tried on her this Friday where it would give her more amplification in higher frequencies.That would give her more clarity and eventually we would see the change of both HA , maybe to Phonak as they are programmed specially for kids.We are going slowly as too much change would affect Prisha too much.

The new pipes are conical from inside

The entry is smaller and the side into the ear bigger

    Another change is the ear mold. Prisha's impressions were taken for new molds, where there is scope for more ventilation in the ear leading to fewer infections.I would get them this Friday hopefully.She is also putting special tubes which are conical, thinner at the HA side and bigger in the ear canal, so that would give her additional 5 db raise in the hearing, which is great too. I am very excited about this change and look forward to her better hearing. I have to now work on increasing her vocabulary. She forgets the new words and needs to be reminded more.This is normal in HI kids.Normal kids can learn 10-12 new words everyday, it is as low as 5 words for HI kids.This was told to me by Ma'am and she said just work on her reading, it would eventually show in her speech.Yesterday she wrote a small summary of the book she read 2 times with by husband.That was very encouraging.Need to just help her so that she can express herself more.She does get stuck sometimes at what she needs to say. need to get back her fluency back that she had.It is so true, the regression is very quick in these kids and they can't be left without the environment of language and learning.Lesson learnt.

Audiograms and puretone

   Yesterday we were with a big ENT surgeon who specializes in CI and we were there for testing her hearing. I am very sure that I do not want to do surgery but would like to wait for maybe stem cell in future.We got her aided audiogram done and we were very depressed with the results.Prisha's gain is not too good on the hearing aid and that means she is not hearing too well.But our hard work and her willingness to work has given us the results so far. But she does strain for listening and does talk loudly. The audiologist in India did make a mess for reasons of her own and she refused to do anything further when we went to her. She had been after me to get her implanted and has fingered with her levels of hearing aids. I was scared to go back as I did not want to mess it up further.She is known to be a crook and she is the only one who has the latest technology and we were dependent on her. We had asked her in the past to give us the printouts of Prisha's HA levels for our reference and she has always denied to give.I have always felt she has been cheating us but cannot fight it out for the simple reason that I depend on her for HA services. The helplessness was always killing.But through hard work, Prisha has been auditorily trained. She had told me that her aids have been given maximum gain and nothing can be done further and out of sheer helplessness we have just survived so far. Once here, we were looking for answers.But after yesterday, I was so depressed as the doc told us that nothing further was possible and only best hearing was possible through CI.But I am very keen to continue with HAs. So we took our quest further and decided to look for audiologist instead of seeing a surgeon. We contacted the Siemens HA cetre and through them we came across a company which has centres across the country.At there center , I was so amazed at the facilities. She told us that the kids centre was elsewhere and she is fixing our appointment with them as soon as possible.She checked her aids, looked for the settings and we asked her if it was possible to increase the volume in the right ear which has good hearing. She increased it by 1db and was surprised to see Prisha's instant reaction. She suddenly softened down, was hearing better and answered the 5 ling test too very well! The lady gave us printouts of all her levels of her HA original as well as after the 1db change too.I was so happy and sighed with relief as I knew we were in the right place after looking around for 1 month now.In the car too Prisha was not straining to listen while I talked from the front seat and she was happy too.I was so upset about my audiologist in Pune  telling lies to me that nothing more could be done.Here with just 1 db change, she was so happy. We need to check her entire frequency range and see how best we can work on her to get better hearing so she is comfortable and is able to function better.In India, I was so helpless but here I got a few answers. We hope to get our problem solved soon. According to the audiologist in Pune and the surgeon here, the change in HA    cannot be adjusted in the speech banana.But the audiologist here is sure that we could better it and get good help.Things look suddenly nice after a long time.I ate a big breakfast and slept well after this.Soon we should have some good reasons to smile when Prisha is doing very well in school.Yesterday, she broke a word herself to read it by herself using phonics (jump).I was so happy and had tears streaming down.Hopefully her issues in school would get resolved soon.

Phonics for reading

    Have been doing my part of the job for Prisha for increasing her vocabulary - reading. But I needed to understand the way she is being taught in school too, specially English and Maths. So had a word with her teacher as I wanted a feedback on how she is doing in school.Here there is no homework, unlike in India and so since nothing comes home, I have no clue on what to teach her and reinforce what is being taught in school. She told me Prisha is doing great in music, drama,art, German,P.E.( physical exercise) but somewhere she is having problem in English.She is not able to write down what is being talked about.I got it. Till now she had not started to write in India on her own. The whole style is different. Here they break down the words and write with the help of phonics. In India, it was more of the teacher giving and we coping and then slowly learning to read by writing simple things. Not so much focus on phonics.So the issue is not so much of HEARING, more to do with different style of learning. Part of me was relieved and a part of me said " how to go about it, its an uphill climb".Time is going by and i want her to catch up with her class mates.So more focus on phonics and we need to encourage her to listen to the words , break them and then be able to write them on her own.Phew, tough task it seems for my little girl.But then all this needs to be covered. Target is 2 months, we give to ourselves to get her to start reading by herself and make her own sentences and write.So the whole family has decided to pitch in. Hubby dear is going to give a little time, I read to her and my son would do some word construction on whatever we see around us on the way to school, after school and at home and outside.My girl is very supportive and never says no. I love the way she is holding up strong and is cooperating with us and giving her total time and attention. Reward.......30 mins playtime on the school playground after school (she loves it and I decided to stay back for her), PSP time 10 mins each day and loads of love n hugs from mum. Sounds like a whole package.
Tomorrow we also have our appointment at the new clinic where we have been earlier to her aided audiogram and to get her puretone audiogram too. We would know, hopefully how much her aids are helping her.She has been conditioned very well and I just hope we get the best of results.I am hoping so as she has been able to identify Hindi diphthongs very well which are very difficult.She has been able to do the 6 ling tests well too.Hopefully her aids are tuned to the best settings.I would know how good my audiologist in India was.( She does not have a good reputation and is known to do anything to get money).So a BIG day for all of us tomorrow.need all th luck.

A brief to parents-2

A disturbed parent would try everything to cure deafness-e.g. allopathy, homeopathy,unani,ayurved,acupressure,acupuncture,holy water,expensive petition to Gods, and so on.Sadly none of these are of use.
It must be understood that congenital deafness is not a disease which can be cured by medicines or surgery.It is a condition which is for life.Therapy can only "address"its consequence - "mutism".

The 1st professional the parents seek is the pediatrician ,who will direct to an ENT specialist.It is his duty to alleviate their anxiety and suggest a plan of action.He can assure the parents that the baby will definitely talk provided the parents are able to cooperate & work with the a team of professionals on a long programme.He should stress that even if baby is deaf ,it does not mean he will be dumb.He should assess the loss.Is

1.He should conduct tests to find out if the child is deaf.Tests like B.E.R.A. and O.A.E. are awailable.O.A.E. can be done on tiny infants.

2.Is the loss conductive or neural-sensory.IMPEDANCE test will tell you that.

3.Does the deafness exist from birth or for some reason happened after birth.If it is acquired, then then at what age.

4.Most important-the FREE FIELD AUDIOMETRY and PURETONE AUDIOMETRY [PTA] will tell us how much hearing he has in both ears.STONE DEAFNESS is misleading.95-98% of deaf children have some residual hearing and that can be tremendous advantage.

No matter what the child's age is, once the loss is ascertained, the child should be fitted with 2 appropriate hearing aids.{proper binaural fitting}Sometimes if the loss is more than 90 d.b. it is said that hearing aids will be of no use.THIS IS WRONG. With advanced technology and insights in language learning and improved teaching methods even profoundly deaf children are able to acquire speech and language.

The speech therapists role is most important after that.Right from building up the confidence of parents to establishing a rapport with the mother and child ,getting the child to wear the aids consistently,to developing awareness and meaning of sounds in general and paying particular attention to voices and sounds of speech, the therapist has to work through the mother.To make the child enjoy listening of conversation, the mother has to be guided step by step and actually shown how and when to put on the aids, what to say when and how ,she must say it.Her voice should convey FEELING.{in sanskrit the feeling means 'bhav'}.She has to be explained that her speech should be excellent.The therapist has to treat the mother's speech.She has to be told again and again the following-

1.To speak grammatically correct sentences.Single words do not contain a thought.

2.Verbs are very important without which the sentence is incomplete.The verbs must take the correct form ,conjugated accordingly and nouns must be properly declined according to grammatical case, number, gender.The various word endings are important for meaning.eg...'s,..es,etc.Normal speakers do follow the rules automatically.

A quick recap..

-Deafness is not a sickness, it is a condition.

-Progressive deafness is about 5% in deaf population.

-Mutism in deaf people does not have an organic cause, it is a result of soundless environment.

-Hearing aids help even profoundly deaf people.

-cochlear implant does not restore normal hearing.It is only a vastly superior hearing aid.

-Speech therapy is vital ,more important than the surgery itself.