Tuesday, 25 December 2012

Merry Christmas!!!!

Tuesday !! - 30 Weeks!!

Switch on date - 29-May-2012
As of 25 December 2012, Aarav's hearing age is 30 weeks!!!!
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25-Dec-2012


1 - DON'T remove my ears please!!

We celebrated Christmas yesterday for the first time, complete with the tree and jingle bells and sweets and Santa!!
Aarav dressed up as Santa and rode on his horse-powered-Bike and shared his candies with his farm animals!!
All in all a lot of fun!!

By the time it was evening, Aarav was pretty tired.
But as Kaustubh did not have a holiday yesterday, Aarav wanted to spend time with him. So he stayed awake later than usual.

Usually by 10:30 - 11:00 pm his CI batteries get depleted and the Neptune starts its orange-beeping.
As it is already sleeping time, I usually do not change the batteries and let them get depleted completely.
Aarav too does not mind that peace and quiet before sleeping time.

If I am not near him, I let the batteries beep and die, but if I am, I switch the Neptune off.
The beeping drives me crazy.
Yesterday around 10:45 Pm the batteries got depleted and started beeping.

I pulled the Neptune out from the pouch in the lanyard and switched it off.

IMMEDIATELY, Aarav got annoyed and pointed at the Neptune, and told me .."HAVA!!! DE"

He still wanted to hear and was not ready for the silence yet!!
We put in new batteries and Aarav kept them on till midnight!! :-D

Happy. Happy. Happy.



1 - On Boys and shopping..
I have been missing his therapies for a few times now.
Hate it. I have been too busy at work and at home and the rest of the times, I have been unwell.
Still. Hate it.

The last time we went, our therapist told me to now introduce two items at a time to Aarav and make him remember the list of items. Both of them.
For eg. "Aarav get me a Cow and an Elephant"
What we expect is that Aarav should pick one in each hand and get them both.
What happens is, either he gets only the elephant or only the cow, or totally gets bored by the concept of overloading his memory and getting anything at all.

How does the boy remember what we had done with-the-correct-sequence a few weeks/months back but cannot get two items on a list properly?
Being lazy or just being a Boy?

It is true.
Boys and shopping never works out.






They just bring the entire shop home.

Anyway. More practice for now.


3 - More Bike rides...

Kaustubh picks Aarav up from his daycare and then he takes him for a long ride on his bike.
After the first long ride, when Kaustubh comes back in the building car park to park his bike and come up home, Aarav asks for one more ride..

A few times, Kaustubh made him say it."Baba Aarav la bhooor gheun ja"
Aarav repeated, "Baba Aavava Bhooo"
And then he got the second bike ride.

Now, whenever he wants to go for a ride, he makes a sweet face, and repeats "Baba Aavava Bhooo"
Randomly as well. He remembers what to say when he wants to go out!!!

He is using his words now properly.

Happy. Happy. Even More Happy.


4 - Verbal Appreciation!!...

To encourage what he does or to show preference of one object over another, We use the words 'Chaan Chaan'.
Which means that 'this is nicer than that object', or 'you look nice now'..
Basically it is to appreciate and enforce good behavior..

Since a few days, Aarav is now using the very same words to tell us that he thinks something is nice.

If he gets a choice between salads and sweet corn , he points to the corn and says 'Aa aa' ..

Yes, yes.... His 'aa' sounds like every other aa aa word that Aarav says till now, but the gesture is included.
And he has a huge smile on his face to make sure you understand that he is showing his appreciation
You cant miss it!!

And now that we have been hearing his babbles for so long, we can make out his babbled words even without gesture.
They sound like the actual word. If a lip reader would see him speak, his facial expressions and lip movements too show most of the true word.
Just till the time the consonants emerge, I guess they would be said 'silently'...


5 - Music Appreciation!!...

If we put some music on TV, or the cell phone, Aarav now starts dancing.
He does the Balle balle dance and tells that he heard the music as well!!


6 - Music appreciation when not wanted ??!!

A few days back Aarav and I were sleeping in the main room on the couch.
The HA was removed but Neptune was still kept on and working.

I muted the Television and silenced my cell phone.
Then told Aarav to please lie down and"Eyes Band"
Aarav closed his eyes and pretended to sleep.

At the same time, some music started playing outside the house from a neighbour's tv..

Aarav opened his eyes, and looked at me, and pointed to his ears and started the balle balle dance again!!!
As if to say, "Dance time with the music on!! I am not sleeping."
 


These are the times, when I have to actually scold Aarav to stop listening!!!
Joy!!


7 - Word count of the day?

I keep a list of Aarav's word count.



We are not satisfied yet as everything is still in combinations of babble and very less true words…
All the consonants except Ba and now La are missing.
(Count of true words would be 3-4 only, and that is very very very very less)...

There should be more.
However, we are still considering only the ‘speaks repeatedly’ count now!!

Not satisfied, but happy nonetheless...

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Monday, 24 December 2012

Twas the Night before Christmas.....

Santa visited our house yesterday. 
Little Santa...
Red nosed Reindeers and sleighs in short supply, he arrived in a one horse open sleigh four horse-powered Red bicycle.





Dasher; Dancer; Prancer; Vixen
And brought his bag of goodies.
Even got his other farm animals along.

He then tried to find our gifts, but the bag was too small and the farm animals were crowding it even more.... 

He found the gifts.. but took his time deciding whether we had been good or bad....
Santa going over his list of good and bad kids...
  And thought a bit more.
And a bit more.

Then finally decided we had been mostly good.


He gave Kaustubh a car and me a few Farm animals. :D
santa gifting through the chimney



Made sure I understand which farm animal he would like to see by dinner time.

Dont forget, he said.

He sat by the Christmas tree.



And ate the cookies we kept.


And some milk. 
And then he got back on his Horse-carriage...



And then he was gone....

aarav shewale santa little santa costume dress up as santa cookies milk christmas gifts
A Merry Christmas to you all !!!

Friday, 21 December 2012

Go Balalas!!

 


Aarav has now started using specific words to show and tell what he wants.

And he also says "Hava" *
So we have started asking him "What do you want?"

The replies are varied.
For water, he says something like 'Pa' with a sign of thumbs-up pointing to his mouth and then the kitchen.

For hunger, he signs and points to his mouth to say that he is hungry.
Then sometimes its Apple, Tv, Cycle, Ball etc etc etc.
Mostly the signs are accompanied with the babbled names.

But now, Aarav knows that I understand most of his babbles, so he just shoots off commands at me without bothering to sign or look at me.

 
If I am trying to feed him an extra morsel when he is full, he simply says Baa*
He wont even look at me or do the Baas sign now!

If he wants his favorite toy, he'll call out to it, "Abbi Abbi"* and expects the toy to come running at him.
 
"Ba baay"* is one that gives us the goose bumps. It means that whether we want to or not, Aarav is ready for a walk outside.
This is when the Teletubbies save us.

(Yes, we are horrible parents and sometimes resort to TV bribing, but a walk outside after 11:30 pm is not good for sanity.
We have been there before. We'd do anything to keep him in the house.)

Sometimes it is just irrelevant babble.
We cant tell what he really wants, so it is mostly trying out combinations of words we think he is saying; and figuring out the gestures if at all he does spare a few.

Now that his syllables are emerging, his new and existing words are being revamped.

So, what do you want??

Balala.

No. Tell me what do you want to eat Aarav?

Balala

Ok. Lets watch tv. you want to see Teletubbies??

Balala!!

Sleepy? Ball? Mobile? Bath?

Balala!!

Umm?? What aaarrre you saying??

So, Aarav made a frustrated face, got up from his squeaky chair, stood facing me and said, " Aai, Up Up".

.

And made me follow him to the kitchen.

.

And took me to the fruit basket and then pointed, "Balala"

.

.

.
 
.

.

.


 



Ohh!!
So LA is the now na.

Ok here you go.
Go Balalas!!

Tuesday, 18 December 2012

Three this Tuesday - 29 weeks old!!

1 - Rehab Documents with Cochlear!!

I went through the Rehabilitation documents provided on Cochlear.in website.

They have so much information on Rehabilitation and Early intervention!!

Every single document is amazing!! They are really well written.
And what is even more astonishing? They are available for all, whether you are a Cochlear customer or not !!

I went through a lot of the documents and then I came upon the "The Toddler weekly home lessons".
It just made me feel that we are still not doing enough.
So now, apart from the homework our therapist gives us, I feel the need to also go through few of the weekly target documents provided.

Lets see how the two can be merged and used.

2 - Aarav and his babbles!
Aarav is not babbling with more variations. Va , La, Ba, all are in and being used in combinations.
But BA still is a bit more dominant.

3 - Bananas are Balalas..
Aarav calls a banana with his tongue sticking out. It comes as a Balala.
This one was simply difficult to understand. Aarav had to explain it to us.

_________________________________________________

Tuesday, 4 December 2012

Two this Tuesday - 27 Weeks !!

1 - LA LA is here!!

All of us were worried as to why Aarav was stuck on "BA" syllable.
This Saturday we went for therapy, and for some magical reason Aarav suddenly started saying "La"
Yes!! Whev!!
Finally a new one!!


It is now Flower = La la. It sounds like Lowe.

Aarav is now repeating the rest of the words as well.
I don't need to hint him now to say his favorite words.

He says Rickshaw - "EE-aaa" every time we see an rickshaw. Its like a reflex action.
He also repeats these - Bus (baah), Dog (it still sounds like boo), Cat (aa its a Cat with C and T silent. Like an accent :D )

His word vocabulary has gone up pretty well.
Its like he is a sponge now. Everything I tell him, he now soaks it in.
Although he is a bit lazy, when it comes to speaking them out.

I have to squeeze it out of him. (and I don't mean metaphorically. I really do have to squeeze him till the words pop out!!)

2 - Advanced Bionics are the best !!


A few weeks back Aarav managed to damage the Aquamic's chord. We spoke to our Audiologist who took the matter to the AB guys.
As soon as they were informed, they sent a new chord to check the Aquamic and replaced the damaged one IMMEDIATELY!!

They also replaced Aarav's Neptune color case as well!!
So we are now back with all good working pieces!


 

Monday, 12 November 2012

KEM Big Ears - LOKMAT Paper

Gulzar Saab, eminent lyricist and Poet visited KEM Big ears on the 12th of November.
 
My post on that event to come soon.
But bits of news clippings till then...
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Lokmat Epaper -

(The below information belongs to LOKMAT. The only reason to copy is to ensure that the data remains with me on the blog even if lokmat take the page down.)
 
Date 12 - November - 2012
Page 8
 
Details:
 
ज्येष्ठ कवी, गीतकार गुलजार यांनी पुणे येथे कर्णबधिर मुलांसोबत दिवाळी साजरी केली. या वेळी गुलजार म्हणाले, काळ जसा बदलत गेला, तसे कपडे, राहणीमान, जीवनमान सारेच बदलले; तसे चित्रपटाचे कथानक व गाण्यांच्या मागण्याही बदलल्या. बदललेल्या गाण्यांची मागणी ही त्याचाच एक भाग आहे. मला प्रवाहासोबत जाणे पसंत असल्याने मी हा बदल स्वीकारला आहे.

 
 


KEM Big Ears - Punescope.com



25 Hearing impaired Children Graduate today


Pune, Sunday, 11 November, 2012:
Graduation for all of us means an educational achievement, however, today it stands for a step towards a more promising and fulfilling life of which education will bea part.
BIG EARS, a clinic which focuses on early detection and intervention in patients with hearing impairment today announced the Graduation of 25 young children who were hearing impaired since birth. The Graduation ceremony took place amidst much fan fare which was attended by parents, doctors, the entire team of KEM and well-wishers. The Convocation ceremony was graced by none other than eminent poet, writer and lyricist Gulzaar Saab, who handed over the certificates to these small Graduates.
All the children who have Graduated today, received their implants in between the years 2006 till 2008 and post surgery there was an integral habilitation program varying from a year to eighteen months during which the cochlear impalanted child had to undergo training in listening and speaking. The child was then able to develop near normal speech and language skills enabling him/her to become a part of mainstream society.


Today Big Ears is proud that all the 25 children who have graduated are ready to mingle with normal children and attend regular schools.

Speaking about the Graduation ceremony, Dr Neelam Vaid, Director and Implanting surgeon of Big Ears, said-
“ To accomplish great things, we must not only act, but also dream; not only plan, but also believe.” It is only appropriate that we acknowledge and applaud the parents who dreamt and believed that their children are no less than others and left no stone unturned to try and give their children a better future. All of us at BIG EARS are committed to fulfilling the dreams and beliefs of these parents. The team consisting of audiologists, therapists, speech and language pathologists and surgeon ensure that the family recieves appropriate advice and care. It does not end there, 98% of our patients come from families that cannot afford this expensive technology. Over the past 6 years we have helped 175 children and their families get financial aid and acquire this technology. Its not been a easy task and the commitment of the social workers of the KEM Hospital, Pune is to be lauded.


Ironically Gulzaar saab directed Koshish, the Hindi movie in 1972 which featured the Late Sanjeev Kumar and Jaya Bhaduri who were a deaf and mute couple which depicted their conflicts, pain and struggle to carve out a niche for themselves in the society. Today after 40 years it is at his hands and with his blessings that these young 25 children are trying to make a place for themselves in this world amongs normal children.

Today this ceremony also marks the completion of 175 cochlear implant surgeries, performed by the Big Ears division at KEM Hospital. The evening will be dedicated to the contribution they have made in giving a new lease of life to hearing impaired children.

 In order to show their gratitude for the support, understanding and time given to them, the children of Big Ears put up a special dance performance to win over the hearts of everyone present.

 About Dr. Neelam Vaid
Dr. Neelam Vaid is an Associate Professor at the Dept. of E.N.T., K.E.M. Hospital, Pune. She is also the Director of BIG EARS, a clinic which focuses on early detection and intervention in Patients with hearing impairment.
She obtained her Master in Surgery (ENT) from the University of Poona in 1990. Her interests are mainly in Oncology and Endoscopic sinus surgery. She has been involved with Cochlear Implants since 1999 and started a specialized Cochlear Implant clinic at BIG EARS in 2006.
She also introduced neonatal hearing screening for the first time in Maharashtra in 2005. She is involved with Genetic and analysis of nonsyndromic hearing loss in the Indian subpopulation. She has numerous national and international publications to her credit.

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Zee 24 Taas - Aarav on TV!!!

Gulzar Saab, eminent lyricist and Poet visited KEM Big ears on the 12th of November 2012.

Gulzaar Saab visited KEM Big ears.

As telecast on Zee 24 Taas new channel.



Aarav made his first TV appearance at 25 months of Age !!!
Loving it!!

KEM Big Ears - SAKAL TIMES Paper


Gulzaar felicitates twenty five hearing-impaired kids

Monday, 12 November 2012 - 12:00 PM IST

 
 
PUNE:
Twenty-five young hearing impaired children, who successfully received implants between 2006 and 2008, were presented convocation certificates by eminent poet and lyricist Gulzaar, as they took a leap towards a more promising and fulfilling life.
The ceremony was organised in the city on Sunday by Big Ears, a clinic that focuses on early detection and intervention in patients with hearing impairment. Doctors, patients and the entire team of KEM hospital were present.
Addressing the audience, chief guest of the ceremony, veteran poet Gulzaar said that he has been associated with hearing impaired children right from his film Koshish. The Hindi movie featured Sanjeev Kumar and Jaya Bhaduri who were deaf and mute. It depicted their conflicts, pain and struggle to carve out a niche for themselves in society.
Gulzaar, who is also involved in running a school for disabled people at Bhopal lauded the efforts of the Big Ears division of KEM hospital, which has been giving a new life to these special children.
“I feel glad to see so many people working for the welfare of these children, which enables them to pursue their dreams like other normal children," Gulzaar saab said.
Gulzaar revived memories of his past when he used the medium of film and television to spread awareness about the medical aid.
Dr Neelam Vaid, director and implanting surgeon of Big Ears said it is only appropriate that we acknowledge and applaud parents, who dreamt and believed that their children are no less than others and left no stone unturned to try and give their children a better future. “To accomplish great things, we must not only act, but also dream; not only plan, but also believe." Vaid added.
The felicitation was followed by dance performances of the beneficiary children.
 
© Copyrights 2012 SakaalTimes.com - All rights reserved.
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Tuesday, 6 November 2012

Terrific Tuesday - 23 Weeks !!

1 - On being stuck at Ba...

Aarav has been stuck at Ba since he was 13 weeks old (hearing age)..

We checked in his therapy session if he is able to hear his lings and vowels properly.
He heard everything correctly and even tried to reproduce what he heard but the new syllables were still missing.

So his therapist tried to give him a few visual cues, like the lip movements for Pa, tha.
On seeing the lip movements Aarav was able to very slightly imitate them.
The sound did not come as clear as his usual syllables but there was an accountable effort.

He has been stuck too long on Ba here.
 
See what the situation was at ---
And then found the EEs again at 14 weeks.... Click here.
And click also to see that he also to scold me and say Nako and Baas..
But all the words learnt were combinations of lots of musical word like babbles with Ba somewhere present.

So just to be sure that there are no map issues or any other issues, I asked his Therapist and Audiologist whether he should be having new syllables in his babble by now..

Our Audiologist said that the map may not be the issue here if he is able to hear them.
It is just about being able to reproduce them now..
Aarav now has to learn to play with his voice.
He needs to explore and learn how to use his voice to create new sounds, any play exercise should work to make him generate new sounds...

Makes sense!

He does hear them and his babbles do resemble the words, but if he does not know how to generate a certain sound, how will he be able to create it !!??
So now apart from usual therapy and word association, we now have to help Aarav to just make new sounds and encourage him to exercise his vocals ..
From these new garbled babbles new syllables should come in...

2 - Conversations de babble..

I started forcing Aarav to give me hugs when I want them since last few weeks.
However, to be fair to him, I usually ask his permission.

"Aarav, Pakdu ka tula? tras deu ka tula? masta pappya gheu ka?"
(may I hug you, cuddle and bug you?).

And then the cuddling starts.. Then when I sense that Aarav wants me to stop, I ask "Aarav baas ka? nako ka? sodu ka tula?"
(Aarav, had enough? Should I stop? Should I let you go?)

Yesterday evening, Aarav was in a rather talkative mood.
He came up to me, and took my face in his hands and babbled my permission and gave me the biggest kisses ever!!!

Then just a few seconds later, he said,
"Na oo? (no no no i want more please!!)Baa? (no no no not enough!)" and walked away.

Well.
A few hugs better than none!!

3 - Aarav is "Drifting" !!!!

I always knew that boys were genetically programmed to love fast study vehicles.
Aarav's toy preferences prove the same. He clearly is biased towards selecting cars over other toys, especially the ones that survive his riding attempts as he wants to actually sit and ride the toy.


However, what I had not expected was, that Aarav would take pretend play to that level!!
Yesterday, Aarav reached new levels of motor skills expertise..
He is now not just running, but DRIFTING...


Aarav is now pretending to BE a car and doing 'Tokyo Drift' stunts in the house.
His running speed and maneuverability surpasses most supercars by now.
He narrowly misses tables, stools, walls, toys on the floor, overhead obstructions like parents trying to catch him with utmost precision.

More nerve endings fried per second from now on.

3 - The Neptune Lime green to be changed...

The Lime green Neptune cover case that we started using in august developed a mild crack recently..

AB has promised to replace the cracked piece asap..
Their response has been immediate.
Love them for that!

4 - Aqua mic broken?

Last week Aarav's aqua mike stopped working.
Well, I don't exactly know if it is the mic that has the problem or the Aqua mic's chord.

Apparently, Aarav finds the Neptune's chords more delectable than PSP chords.
So as of now, we are waiting for AB to send an extra mic and chord to the KEM Big Ears center so that we can check what has gone wrong.



Sunday, 4 November 2012

AB Neptune Vs AB Platinum Sound Processor

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We used the AB PSP from 29-May-2012 to 16-Aug-2012 and then we moved on to the AB Neptune from 17th Aug onwards..
So... As of today, it has been exactly 80 days each of PSP and Neptune!!
A quick experience feedback of both the PSP and the Neptune...

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The first and biggest benefit that the Neptune has over the PSP is, its sleek small design.
 
Aarav's small body frame used to be overloaded with the PSP and the harness and the bulky size of it.

But the Neptune can simply be clipped onto his collar or he can wear it in the Lanyard. There are so many wearing options with the Neptune!

Aarav did not like wearing the harness, but with Neptune we have had no such problem!
The weight of Neptune is negligible as compared to the PSP.

Another benefit that makes Neptune better, is the Neptune Connect!!
With the PSP, Aarav would be able to remove the PSP cover and turn the dials on his own.
But without the Connect, there are no dials on the Neptune!!

As of now, we have only one program set on the Neptune, and we do not need the Connect as frequently.
Maybe in the future or during schooling, the addition of the FM system will mandate the use of the Neptune connect.
I am just hoping that Aarav understands by then that he is not supposed to touch the dial settings..
 
This makes the Neptune is almost Child Proof!!
I say 'almost' childproof because, Aarav can pull the cable chord out from the Neptune side. But that is the only proven mischief he has been able to do with the Neptune.

It was easier to let Aarav go out in the Rains or take a bath with the Neptune's Waterproof feature.
Aarav and Water have some sort of affinity for each other... They just seem to find each other somehow..
It reduced a lot of anxiety knowing that Aarav's Ears will still work if he decides to play "bath-time" with his glass of drinking water...
This was not possible with the PSP.

The color features of Neptune are very pretty, however not complementary as the PSP color caps.
These have to be separately procured.

As we have used both PSP and Neptune for a very short time, It is difficult to tell in detail the benefits of Autosound and ClearVoice of Neptune.
Aarav needs more hearing experience to be able to differentiate that accurately.
We might go back to the PSP once just to check if he feels the difference.
However as of now, hearing wise, both PSP and Neptune are at the same level for us.

In spite of the many plus points of Neptune, there is a big negative that we have seen.
Battery life of PSP was much better and Much much more predictable!!
With the PSP the batteries would last for almost 18-22 hours straight. So one battery would be enough for a day and a half. We never needed disposables!

Plus the design of PSP is such that the batteries indicate their charge status when in use as well as as during charging.

In case of Neptune, the batteries are drained much much faster.
What is worse, is that Neptune indicates that the battery is drained ONLY after it is completely drained!
There is no prior indication at all.

It is also not possible to understand whether a Rechargeable battery is fully charged.
So it becomes mandatory that we carry fully charged disposables at all times.
It might seem funny, but we now have separate packs of disposable batteries almost everywhere Aarav can be found.
In the car.
In the house.
At my mom's house.
At Aarav's daycare.
In my office bag.
In Kaustubh's bag.
And in our pockets if the bags are not taken!
 
Literally. Everywhere.

And in the rest of the places not named above, lie the other discarded batteries waiting for their destiny to be fullfilled by being used for the last few hours of their life in some electronic toy, tv remote or a wall clock..

These are over-the-counter-used-everywhere batteries, so it does make them easily available.
However, with such a short shelf life, it has become an hidden added expense that does not get accounted for.

The Rechargeable batteries last for approximately 10-12 hours and the disposables last anywhere between 12-15 hours.
 
If a battery is removed from the Neptune, it either goes directly to be charged again in case of a rechargeable or it has to be thrown away if its a disposable.
We cannot take a chance and reuse it again because of the worry about how long it will last.

Also changing the batteries is a big difficult for any new person due to its childproof design.
It was easier with the PSP.

(Aarav goes to the daycare for 8-10 hours a day, so we have to put in a full battery every morning. It is not sure who may be present to change his battery as this may not be the same person always.
Better a new battery than Aarav having to wait without sound!)

All being said, We still think that the decision to go for the Neptune was a smart one. Especially since Aarav's babbling has been much clearer with the Neptune. The size makes him comfortable and being waterproof gives him freedom. And the Connect gives me control over his hearing as well.


All in all, a good investment.

What more do we want!


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