Camera Obsessed

Whenever I take my camera out, Anasooya puts a big smile on her face. She has been camera obsessed since she was 1 year old. And whenever she wears her new dress she immediately says "photo". In the photo below she was asking me to take a snap.

I think I have taken more photos of Anasooya than anything else. Since she likes it and knows that she is being photographed it is very easy for me too... I don't have to wait for that perfect moment when she sits steady. The moment I take my camera she's ready, sitting steady, with a smile on her face already.

Below is another photo in which she appears to be looking at her future and trying to break the frontiers of her silence... However, that is past and she has come a long way in the last one year after her activation.


While attempting to capture a perfect picture of Anasooya and her cousin Meenakshi, I was asking the little girls to smile... and below is the result. It was very cute and funny and I just couldn't help myself.


Below is another photo with some more expressions. Although my attempt to take that perfect picture failed, I ended up with these photos which I think will be very funny to look back after a few years from now...

Can three words make a sentence?

Yes, Yes, Yes!
As Anasooya's vocabulary gets richer and richer she has now started moving towards achieving the next milestone - Speaking a complete sentence.
By the way, she doesn't use too many signs or gestures while talking, except for those naively babyish ones. Coming back to speaking meaningful sentences, here is the one that she says very often: "Meenu Tata Poyi". This means Meenu went out.
Meenu is her cousin. Well 'Tata' is the generic word that suggests a journey, going outside the house, or simply a walk around the park. This doesn't apply to only CI children, but for any kid of age 1 year or so, well at least in our place(Kerala) in India. Three cheers for Anasooya on her first three word sentence!
Now she knows how to make other variations to this like "Appooppa/Ammooma Tata Poyi". Well, Appooppa and Ammoomma mean Grandpa and Grandma in Malayalam, the language that we speak.

I am sure that when she reaches the age of going to kindergarten or primary school, I will be adding another post to this blog or start a discussion elsewhere on this issue of teaching CI kids multiple languages. Maybe it could be my next post. As an early preview I can only tell that this is an advantage and disadvantage of living in India. For example, I can read "and" write as many as 5 languages. English, Hindi, Malayalam, Kannada and Tamil. English is the ubiquitous language, Hindi is spoken mostly in Northern states and every South Indian state has got 1 language of its own. This may be compared with Europe and some of these states are much bigger than many of the European countries.

Below is a recent picture of her with the same background of the wooden door as in the photo that you see in my first post that was taken a year ago... She's grown taller and a lot of events happened in between...(Shhhh!!! :-)) Hope she smiles always like this. I will keep posting a photo with this same background every year and it is going to be very interesting :-)

Trip to Mysore - A handful of photos

Some snaps from our recent Mysore trip:

CI Switch-On Video

This is the video that everyone in my family would like to watch over and over again, especially Anasooya when she grows up and be able to judge what we have done to her!
Though this is not a quintessential activation video, this has great significance in our lives which I would never be able to explain in words. Most of our Switch-On experience is described in my earlier post and I am not repeating it here, though I would really love to add many posts that speak volumes on the switch-on.

Below is the video that I uploaded to Vimeo. I think it is very heavy(50MB) although I compressed it to mpeg from the original avi format(400MB). In case if you feel any difficulty in downloading/viewing the video please drop a comment so that I can think of other options. Alternatively, if you think you know of better options in terms of video compression/hosting the video then those thoughts are welcome too.
Here we go!!!

Anna's activation video on Vimeo
This is just a small part of the activation process and one wouldn't see a great deal of the audiologist talking to Anasooya or her parents. I was just lucky enough to capture the switch-on part. Had I planned it well in advance, I could have shot a better video :-(. Let me just list down a series of (lame) excuses as to why this video may not be living upto the descriptions I have given so far about this ;-).
I wasn't in a great position to shoot this video, nor was the room well-lit.
This video is not captured using a regular video camera.
I used my favorite Canon Powershot S2 IS in video mode. Well, that cam is my favorite as I haven't handled any SLR yet. Almost all the pictures that you see here in this blog owes to the incredible technical perfection of S2 IS. Nevertheless, the photos in my first blog post were taken using an Olympus Camedia C70 - my first cam that gives awesome picture quality.

CI Activation

...And the long wait was over and it was the date of CI activation in June 2006. Since I missed most of the important events so far I wanted to be present when Anasooya's CI goes live.
The doctors don't have much of a role to play now and the audiologists take over the activation and mapping, or in other words fine-tuning the device. After waiting for almost an hour we were asked to bring her in. It was her usual time for taking a nap. We were trying to keep her awake and wanted her to be in a happy mood. First the technicians didn't let all of us in the family to get in thinking that it might distract Anasooya and hence making it difficult to judge the responsiveness to properly map the device. But when I said that I wanted to have this videographed they let me in. After all, this was the event that we were all waiting for and possibly the second time that we were going to be happy when we hear her cry!!!
So Anasooya, her parents and me along with the technicians in the room and we were all set for the switch-on.

Some initial checks as usual and then the mapping started. It was amazing to see her first response. She was playing with some toys and suddenly turned her head to the side to see where the sound(!) came from. I think she was surprised by this. So far she got used only to sight and touch. Wow! a new sense got added just now... How can I ever describe that feeling!
The next thing they did was to increase the intensity (not quite sure about the exact technical terminology that they might be using) of the sound and this time she cried.
She wouldn't have got any clue why all the people around her are jumping out of joy when she is crying. Luckily I caught this in video and maybe she can forgive us later!

It is still not clear to me how the sense of hearing is like with a Cochlear Implant. I have seen many websites/blogs by older people who've got the implant much later in their life. But they don't seem to completely describe how the exact feeling is like. It could be possibly because the results vary from individual to individual. I have read somewhere that when you first hear sound through a CI it is a mechanical noise. Possibly yes, as our brain is so used to filter out the relevant noises from a chaotic acoustic world. Our brain is so much sophisticated to listen to only those sounds that match the context and this has happened over the years. May be a new born hears the same way as a newly implanted kid, perhaps a little more clear. It is the training and constant refinement in filtering the sounds that makes a perfect sense of hearing, I believe. At times I keep one of my ears completely closed and try to listen to sounds using the other ear thinking that I may get a feeling of how a single cochlear implant would possibly be. Yes, there is a lot of echo in this case and it is very difficult for us to hear that way. I am not sure if this experiment is ever comparable to a single cochlear implant and that a bilateral implant may be compared to normal hearing using both ears that reduces the noise level.

The next few weeks after the activation were very interesting. Initially there was not much of a difference that we could see. The doctors infact had told us that it might take as many as 6 months to see any positive results. There were a couple of more mapping sessions to follow.
The first mapping session that happened after a week or two of the activation was not very accurate as it turned out. The next one however improved the results. By then, she responded quite well to the sounds and one could clearly see her brain learning to listen to sounds. Typically it used to take a second or two for her to turn to the side where the sound came from. A larger turn-around time! But the next few weeks saw a constant improvement in hearing. She used to look upward when we asked her where a crow is, or she used to point to our pet dog (Ditto) when we asked where he is and so on. She also learnt to wave her hands when we said 'tata' without giving her any indication with our hands. Another important development was that she started making loud noises mostly gibberish and used to blabber continuously, may be as an attempt to reproduce the sounds as she hears. At this stage her grandparents thought she at times 'says' words meaning 'grandpa' and 'grandma' in Malayalam, our mother tongue though it was not quite clear. However, we couldn't accept it as a success unless she says something that is clear and meaningful and the wait continued along with the training that we started months before the surgery.



PS: I will upload the video and publish it here as soon as I compress it to manageable size.

Anasooya's Story Begins

Anasooya is my elder brother's daughter and was born in Sept 2004. A cute healthy baby girl and she brought a lot of happiness along- just as much any third generation newborn would bring to a family. Three months later another cute little member joined our family, my eldest brother's daughter Meenakshi. So we now have 2 little girls in our family almost of the same age doubling the joy of our lives.

A year later both kids started walking and started making as much gibberish noise they can and all the mischief they could manage at their age. Anasooya was very active and energetic and she was the darling of the entire family. She used to imitate all the expressions and gestures that the adults would do and most of the communication happened this way and we were so happy that she is very communicative at this age. She was very intelligent and very observant. She used to be very much particular about keeping things in their place and used to complain if anything is misplaced. Well, this was definitely much more than what we would've expected from a one year old. That’s when the younger of the two-Meenakshi started talking meaningful words and our attention now turned towards Anasooya. One of our neighbors, a medical doctor once noticed that she is not responding to car horns and was a little suspicious and recommended us to get a checkup done from an ENT hospital. Even at this stage it was very difficult for us, or we didn't know how to find out if she's really not responding to sounds.


That day finally arrived when we took her for the detailed medical checkups and finally we got the results. I was not present when the doctors told her parents about this and don't know how they actually responded to this. But it must have been really devastating for them. However they were so strong mentally and could withstand the truth that was heard. But it was shocking for the entire family and so was for me. The first question every one asked when they heard about this was "Ok, what best can be done now?" and "A Cochlear Implant" was the answer. That is when I first heard about CI. However I also heard that the cost would be so high. The estimated cost was about 8-12 Lakhs Rupees (~20000USD). I believe this is one among the costliest medical devices, possibly more expensive than many life-saving devices. But for us this was nothing shorter than life saving as a whole life is ahead for Anasooya and she has just started her journey without hearing much about how the future sounds like.

I spent the next few days entirely on searching the internet for gathering as much information about CI. By the end of my preliminary search I got a fairly good idea of the cost and effectiveness of CI and I was quite convinced. I passed on all the information that I got to my family. The idea was to get the surgical implantation done as early as possible. The ideal age for an implant would be before the kid is 2 years old as that is when most of the language development occurs. Earlier the better! So we decided to get the surgery done almost immediately as Anasooya was 1.5 years old by this time. The next biggest question was how to arrange for such a huge amount of money to meet the cost of the surgery and the equipment. Fortunately we could find the sources from family property and also a couple of personal loans. We now got answers to two of the biggest questions. The other question that remained was whether or not to have the implant on both ears. A quick search on Google and I found that this was not yet proved to dramatically improve hearing than a single implant. Moreover, it would have doubled the cost and in that case things would be really tough for us. An important and very helpful thought that came up at this stage was to leave room for future improvements in technology. Who knows in another 20-25 years or may be even later a new technology might come which may be a better alternative than CI! However, we wanted to buy the latest and the most advanced model of the implant available. The suggested device was from Cochlear. We decided to go ahead with a single cochlear implant and the date was fixed for the surgery - 5th May 2006.

We have been consulting with Santhwana ENT Hospital at Trivandrum, just a kilometer away from home. We chose this hospital for the primary reason of being so close to our house and also for the fact that this is a hospital with so much good reputation and so many success stories to share including prior cochlear implants. Before the surgery there were many sessions were Anasooya and her parents could meet the other kids with the implant. Now, that gave us all some confidence. The chief surgeon at the hospital was Dr. John Panicker who is an eminent ENT surgeon with a very good reputation across the country. Dr. Panicker told us that he would be accompanied by Dr. Manoj of the Malabar Institute of Medical Science (MIMS) who has a specialization in cochlear implant and would be doing the surgery. My brother met both of them several times before the surgery.

So we were all set and the date of surgery arrived. I was not present in the hospital at the time of surgery but got the updates from my father. The initial decision was to implant the device in her left ear. Then in the detailed tests done just before the surgery it was found that her right ear has better responsiveness. The doctors suggested that we should go ahead with the implant on the right ear. We agreed. The surgery was very much successful and it was a great relief for all of us including the surgeons. This is because there were previous incidents when the kids undergoing surgery have waked up from anesthesia and have shaken their head during surgery. Fortunately, Anasooya responded quite well and the surgery was very smooth. The post surgery tests were also found to be successful. Everyone was thankful to the doctors, gods and the technology or whatever they have had their faith on. A great relief indeed!

We couldn't wait for the next one month to pass by so that we could activate the implant and see Anasooya hearing the very first sounds of her life time...