Tuesday, 26 February 2013

Want it?? Say it!!

A short Tuesday update...

Have you guys notices that I have been jabbering about all the other things about Aarav's development EXCEPT hearing statuses?
Yes, unfortunately, it is true. The topic got derailed and I believe we have been a bit at fault...

Last few months have been really fast and in spite believing we were going in the right direction.. well...  we were just going round in circles.
The upward progress graph of the first few months of hearing can now be considered constant and flat....

This is what happened.

Aarav and I have been practicing vocabulary for months now. And I am happy to say that his vocab has gone up drastically.
He can now identify quite a lot of items correctly and without prompting, and sometimes without asking as well..
So to 'age' his receptive language, we are at 1.5 years old.
That in 8 months 4 weeks of hearing age is still a great achievement! But it caused us to overlook what we are not achieving.

The problem is that his expressive language still lags behind.
He knows the individual words but is unable to string them together...

We got a mapping done in the last week, to increase Neptune's volume.
When we discussed the missing syllables that are still not emerging, we came to know what went wrong.
The mapping will not give him any new syllables. We have to make him speak and practice speech more!!

So now the plan is to enforce verbal commands..
No amount of cuteness in his smiles of touchy - feely - affections should now be considered as a request of any type.

He has to now 'Say it out loud'.


Tuesday, 19 February 2013

Gravitationally Smart!!!

After the funny incident of Aarav posing like Dev Anand in a family function.... I decided it was important to "loosen the strings" ie the Neptune Chord a bit more than usual.
Poor little frog had a bad evening and dint even know it..

So now I keep a bit more of the chord out.
The chord now comes out from exactly behind his head and is just right length to reach his head AND allow head movement.
Usually if the magnet falls off, and Aarav can reach it, he puts it on himself.

Few days back, Aarav was jumping around and the magnet fell off. I was sitting surrounded by a ton of vegetables, trying to clean and sort a huge haul to go for the entire week..

I could see the chord coming out from exactly behind his head and the magnet dangled in the center of his back.
I watched him try to retrieve it a few times. He tried all possible hand movements, and tossing and turning to reach it. More like a Dog chasing his tail.

The magnet completely eluded him. It hung on his back taunting him and there was simply no way Aarav could reach his hand to the magnet. That level of yoga was not going to happen!

Now with his magnet off he couldn't hear me call, so I thumped on the floor to get his attention and I signed to him to come to me for help.
He just looked at me and went back to doing his acrobatics. 
Acknowledging that I spoke to him and then completely ignoring me.

So I started off-loading the veggie bunch from my lap and started to get up...
But of course.. Aarav was is no mood to get any help.

Because even before I reached Aarav..

Now I am not sure whether the next part is funny or irritating. But my 'Mommy'-ness was challenged once again by the lilliputian toddler.

Boys really can not take advise. Or ask for help. Or directions.

It is not a grown-up boy thing. Its just a 'Boy' thing. 
Its hard coded into their source code.

Photo for illustrative purposes only!!
Real time photo was not possible for a stupefied mom!!
Even before I could get up and go help him, Aarav did something that I never expected!

He suddenly stopped all the squirming around.

Calmed down.

Then he stood up.

And then bent down as if to touch his toes.

"Poink and Pop' came the magnet and hit him in the head.

Now all he needed to do was reach up to his head, grab the magnet and put it back on his head!!!

Hmmm. So So proud, but still a bit sad.

Here I was wondering about which elaborate Yoga pose will need to be done for Aarav to reach his hand that far behind for the magnet.. And the smart little boy uses gravity!!!!

He couldn't wait to study Newton to understand the law of gravity??

Wasn't Aarav a tiny-little-miniature-crawling-poopy-baby .. like yesterday?? 
How did he suddenly become such an independent little squirt?? 

I am happy that Aarav is becoming more and more independent by the day.. But dear God!!! Cant he just let me baby him sometimes!!!

Tip for Aarav - When you read this... implement it.
Please pretty please humor your Mommy a bit more. You are growing up too soon. 
Grumble grumble. 
-With love.

Your Oh-so-Proud Mom

Friday, 15 February 2013

One year of knowing the truth...

It has been a year today. 
A complete year has passed us by.

And whether I am ready to rip off the bandage or not, I will have to do it.
In truth, all I want to do is to "pack-it-up-&-stow-it-away-in-the-attic-of-my-brain", cover it with old bedsheets and forget it.
Pretend it never happened. And let the cobwebs take cover, forever hiding it away, as if it ever existed.....

But that wont do, will it?
I will still have to recollect all that happened.

Because I know that a few years from today, Aarav will ask me this.
And I don't want these memories to fade over time or come back with a vengeance for ignoring them.

I have decided that it is time to start pulling off all the bandages.
To bleed off the pain and start a new round of healing.

And what better day to start than today.


October - 2010

Aarav was born a little before Diwali. I was staying at my Mom's.
We stay in a society that enjoys its Diwali fire crackers to the fullest. We always have big fire crackers and bombs bursting all around our house. And the loudest ones on Lakshmi Poojan.

We finished the Lakshmi pooja around 6:30pm. I fed Aarav and he slept on my lap. By this time the bursting of firecrackers had started outside.
Right outside the window I was sitting in, less than 15 feet away, a big bomb exploded. Loudly!
So loudly that even I jumped up in surprise. My mom came running out to see Aarav.
Kaustubh was sitting right beside me turned in reaction to look at him.

Mom - "Why are you sitting here, the fire crackers will wake him up! He needs his sleep!! Go in now!!!"
Kaustubh looked at Aarav still sleeping just as peacefully as always and then "How can he still sleep through this noise !!??? I thought he would be crying by now!!"
Me : "Maybe he's just a good sleeper. It must be a really nice deep sleep he is in"
Mom - "Yes yes yes! good for you. . . Now go in please !! You don't want him to be in this noise!!"

02 - April - 2011
2011 Cricket World Cup Final. India won by 6 wickets.

Indian hearts beat faster when Sachin is batting. And the shouts of anger and tears are real when he gets out.
We were in a mall when Sachin was batting. The women were busy shopping and all the men were crowding all nearby wall mounted tvs.
I was in the center of all the commotion. 

SR Tendulkar c †Sangakkara b Malinga
6.1 142.9 kph, The ball that silenced a billion. Most of Wankhede is silent. Some of it is very noisy, and has Sri Lankan flags waving away in a frenzy. Sachin's World Cup is over. No 100th 100 today. Malinga gets another over, another go at a wicket, and he responds with a wicket. It's that patent back of a length ball outside off and as always, Malinga got it to go away. Sachin tried the same shot, last ball of the previous Malinga over, trotting across and looking for the steer through the off side. This time he edged it, and though it was dying on Sanga, he wasn't going to put it down. He dives to the right and comes up with the biggest wicket of the World Cup. 31/2

When Sachin's wicket fell, the crowd of 80-100 men shouted. Cursed loudly.
This was the final match of the world cup and would have been Sachin's 100th century.
The volume of cries and shrieks, in that moment was too high even for me.

Aarav dint even flinch.
Kaustubh stared at Aarav.
I dint look at either of them. I dint need to know.

Kaustubh - "You know he should have reacted."
Jui - "Maybe he did and you were not paying attention to him."
Kaustubh - "Jui??"
Jui - "No. You were watching the match. Don't start. He's fine"


The months leading up to Feb 2012

Kaustubh - "We should have gotten his hearing checked when he was born. When we were in the hospital itself"
Jui - "You know the doctor said that its not needed. You were there!! Will you stop finding faults. He's fine. FINE."


July 2012 -
On a regular vaccination visit:
Jui - "I think Aarav may have a hearing problem. Is it possible??"
Aarav's Doc 1 = Tinkled a bell right in front of him. Obviously, due to his increased sense of observation, he saw towards the movement.  "He seems fine! Don't worry. Kids in a nuclear family don't get enough exposure to speaking. Most speak really late anyway."

It should have come to me, that Aarav in spite of being part of a nuclear family, used to spend 8 hours a day in a daycare with 20 other kids.
He DID have the required speech exposure.


August 2012

Aarav had cough and cold and fever straight for a week. And all the while our dear "Aarav's Doc 1" never suspected anything other than seasonal infection.

His breathing changed. He couldn't breathe when sleeping. He had fever constant at 102 degrees for over 3-4 days.
She still kept him on baby Paracetamol alone.

His condition worsened. His fever ran up to 103 degrees. Aarav become lifeless, with near white eyes, and boiling hot...
That is when I got really scared and decided that it was time to change the doctor.

I took him to our Family doctor, Dr. S. He saw Aarav and immediately knew what was the problem.
Within minutes of meeting him, he gave Aarav medicines, and brought down his fever. Prescribed medicines and started the medicine course first.
He also prescribed blood tests and chest Xrays.

In 1 day Aarav was much better and his fever had gone. We took him to get the blood tests and Xrays when he felt a bit better.
The results came out and it was confirmed.
Aarav had pneumonia.

Thankfully due to our dear Dr S, we dint need any hospitalization and only medicines worked. He got better in a few days.
I quit my job during this time.
He was back to normal in 2 weeks.


September 2012 -

Kaustubh - "He is right in front of the TV. How come you dint ask me to lower the volume now?"
Jui - "You wont stop will you?? Why are you so hell bend in finding a problem. Haven't we had enough of hospitals now?? Dint last year give you enough. Aarav is fine. Stop bugging me"


October 2012 -

Mom - "Happy Birthday Aarav!!! ... AAAARAAV!!! Aarav!! Why doesn't he turn? Does he not know that Aarav is his name?? AARAV!! Can he not hear me?? "
Jui - "He's playing Mom! let him be." And I stormed out of the conversation. My poor Mom always got the worst of my temper tantrums, but this time it was not just the temper that was hurt.


November 2012 -
We dint discuss Aarav's hearing as a topic. It was a forbidden one.


December 2012 -
After we changed Aarav's doctor, We took him to our family doctor who is Family first then doctor actually.... I can never thank him enough!!

Jui - "I think Aarav may have a hearing problem. Is it possible??"
Dr S = "I don't see any problem with him. But hearing problems may not be as easily evident. I wont say Yes or No. If you have any doubts you should go get it checked"
Jui - "Checked? How?"
Dr S = "Any sound clinic. Its a quick non invasive test. Get it done."


Jui - "Dr. S uncle said to get his hearing checked."
Kaustubh - "Hmm. Does he see any problem"
Jui - "No. Aarav is fine. This is just to rule out any issue."
Kaustubh - "Hmm."
Jui - "Stop it. He's fine. ok?"


January 2012.

This topic hung around like a huge inkblot on the biggest wall in the house. No matter how we tried to escape it, it was too obvious.
It stayed and resurfaced every single time. No amount of covering it up, no hanging old coats on it or rearranging the furniture around it worked. It stayed.


February 2012 -

Jui - "I will take Aarav to get his hearing tested. Will you stop giving me those looks then?"
Kaustubh - "I won't be coming in."
Jui - "Fine! "



A complete year has passed us by today.
Today, one year back. On 15th Feb 2012, we had Aarav's hearing tested for the first time.
I remember the day in picture perfect detail. It is etched in my memory.
I remember standing in front of the glass door of the sound clinic with Aarav in my arms. I remember my brother pushing the door open for me.
I remember the hearing test in the soundproof room.
I remember the look of puzzlement on the face of the technician when he finally saw no response to the BERA.
I remember he came in twice to check if the machine was on and working right.
I remember standing next to Aarav listening to the increasing volume of the clicks from 2 feet away whereas Aarav slept right through the annoying noise.

I remember waiting till the doctor composed his words. I remember hanging on to every word, aching to hear the results.. waiting for a 'But...' which never came.
I remember seeing outside the glass windows at my brother and husband, who said he wont be coming, but still stood outside, worrying.
This memory is still as strong and as painful as the first time.

I remember everything.
I wish I dint.

Because I know that a few years from today, Aarav will ask me this.
And I don't want these memories to fade over time or come back with a vengeance for ignoring them.

I wont be forgetting anything...

I wrote the above blog. But I could not go ahead.
The memory will come back to me. Maybe as retribution for ignoring it too long. But for sure, it will be back. I wont be forgetting it any time soon.
It is now etched in my memory. It still contributes to my nightmares till today..
It is so crystal clear that it is hard to believe that it has been an year already...

I will write about it. Soon.
I will have to rip this bandage one day or another but maybe not today.
For today I'll let the bandages be.

Soon. When I am truly ready.
Or at least ready enough.

Wednesday, 13 February 2013

A slight tilt to the right please!!?

To ensure that Aarav does not damage the Neptune or the chord, I now take extra extra care of them both.

I put Aarav's Neptune in its protective pouch and then in the lanyard. And then I make him wear it like a necklace, pinned to his chest with a well fitted T-shirt.
The chord is strung through the lanyard loops and then pulled out exactly behind his head and then the magnet is connected to his head.
Usually when I dress him up, first goes the Neptune in its lanyard, then his fitted shirt to hold the device in place, then the rest of the clothes and then I put my hand in his shirt to adjust the length of the chord.
So only that part of the chord exposed, just long enough for the magnet to reach his head and some head movement but short enough so that Aarav does not fiddle with it.

A few weeks back, probably in a hurry, I think I went overboard with adjusting the chord's 'Perfect length'.
And this is how I found out....

We had gone for a family event and a lot of photos were being taken for the event.
Now, dear blog follower, you do know how much Aarav loves the camera...

I found Aarav looking out for any and every camera and posing for the camera with a tilted head.
"How did Aarav know of this famous posing style??"

This was the world famous 'Tilt-your-head-and-Grin-em-wide' style of posing!!
I wondered. Maybe he observed his cartoons really well... Or does he remember any of the 70ies heros from his last life?

A little tilt in the head gives pictures a really cute look right?!!

I wondered how Aarav knew of this photography trick.


And then when he turned I understood.

In my hurry, I pulled the end of the chord a bit too much!!!
And Aarav was not "posing".. He was holding his head in that awkward style to hang on to the magnet..!!! OUCH!!!

I saw that the chord was too tight and Aarav was holding his head in a tilt to avoid making the magnet fall for the entire time. :-P (oops)

My poor dear baby frog without any neck movement.

P.S. - To all you CI moms, when your CI kid roams around like a frog.. let him have his neck back!!! Loosen the chord!!!

Tuesday, 5 February 2013

With and without ears??

We took Aarav to the beach for the very first time when was 10 months old. He LOVED it.

He played for almost three hours straight.
Played in the sand, made castles, used the sand as a face and hair pack, even rolled around in it! 
He was not walking back then, just crawling. Even that dint hold him back when in the water. 
He crawled right in and faced the waves!

He dint even care to check if we were around, he was that engrossed in playing.

In 2 days that we stayed, we visited the beach 3 times and Aarav played every single time. 
I was literally out of Aarav's clothes by the time we returned.

Last year after Aarav's surgery, around July, we went to the beach again. 

This time we were not worried that Aarav would get scared, so we put him in his water shorts, and took all his sand toys.

When we reached the beach, I removed the Neptune, kept it in the car, and then carried Aarav to the beach.

This time, however, without his hearing, he REFUSED to play. Or even leave my side. He was cranky and just wanted to go back.

My fearless baby of 10 months was now afraid when at 20 months age?? 

It was then that I realised the difference.

At 10 months, pre implant, Aarav dint 'miss' his ears as he dint know what hearing was at all...

At 20 months, post implant, Aarav wanted to hear. His new ears were now a part of him. No ears and complete silence now meant that something is not right.

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