Friday, 29 June 2012

One month since switch on..

Today Aarav's hearing is a month old!!!

Its been a whole month since his switch on was done!!

Actual age - 20 months
Hearing age- 1 month!!!

I just never realised that my cute little bundle suddenly became an year old and very soon will be two this October. I still keep referring to him as a baby and I am reminded that he's a "Toddler" now. (aaaaaarrghh too soon too soon)

Well now when I want to call him my cuddley baby, I am going to consider his hearing age. :-D:-D:-D

Happy first month, my little baby Prince!!!


Wednesday, 27 June 2012

When the tears want to speak...

I am reading Chicken Soup for the Soul right now.
Every line I read through makes me emotional. Reading stories about other people or animals brings tears.

Its funny how the brain works...

I dint cry when Aarav had pneumonia at 8 months of age and had to be xrayed and blood shots taken and he used to cry through the night, have difficulty breathing and fevers upto 104 and more...
No tears came for any fevers and coughs that Aarav has had, not even in the last few months when it could have created a huge problem.

I dint cry when my father-in-law passed away last year.
A gem of a person, a loving father, a guiding light. I still feel my heart ache, physically ache, even to remember that he's not with us anymore.
Not on seeing the funeral pyre.
Not on seeing his ashes leave us and find solace in the calm heart of the river..
I dint cry.

I dint cry when Aarav's hearing loss was found.
Excruciating pain. Anger. Betrayal. So many questions.
People say, if you do bad to others, karma brings it all back to you. Really?? How big would the magnitude of my 'bad' have to be for this to have happened to me??? What bad did my 1.5 yr old baby do??
"People" don't know anything.
And neither does karma.
Numerous discussions with myself, all in my head. On and on and on and on for hours and days and weeks at a stretch.
Still. Not a tear.

I dint cry even when my baby hugged me, asked for help and cried. Several times. For every pricked needle, for every forced test. That expression on his face gave me nightmares...
Still. No tears. I stayed strong.

I dint let tears come when insurance denied us money.
I stayed practical when I called up NGOs asking for assistance, and I still was ok when they too declined.
I still stayed sane, when the same NGO called me back few days later for another sick kid who needed money for some ailment. Inspite of the pinch, I reminded them of my situation, and told them I would pray for him. And on his stormy day, I did pray for him.

I stayed strong when we emptied our pockets and still had to beg and borrow money.

I dint cry when they took him from me in the operation theater for the surgery. He kept looking at me over the doctors shoulder, till the OT doors closed. I waved bye bye and blew a kiss.
I was sensible and practical and I knew I needed my energy. I remained strong.

I was scared but calm when Aarav fell on his face and bled his lip and cried himself to sleep.

Every time I look at my husband, I feel his eyes speak. Of the pain he has been through. Of the anger and frustration and helplessness.
How can a person be put through so much hell? Some plan god has...
Every time, a new problem, a new bitter surprise. And after every fall, still get up, face the next problem with the same renewed resolve??? Where does the strength come from??
And still through all that personal turmoil, Kaustubh was my strength, my support.
Would I cry??
Guess my tears knew where to find their answers. They just dint come.

I am strong. I don't let my emotions show. No matter what personal mess I am in, I still know to stay calm. I know how to control them. I dont let them control me. EVER. And that how I like it to be.

I seem to have created a transparent fence of "Its not a big deal, it is all just normal, and we are fine" around me. Thats exactly what I tell anyone who wants to know more. And I then add a big reassuring smile. Not because they don't care, but because I don't think I can take any random (useless-for-my-situation) advice.
Either that or I want to ward off people who seem to get their highs by telling tragic stories of how their "distant-relative's-office friend's-seventh sister's-neighbour's aunty" had the same problem. And how they tragically flushed themselves down the loo pot and wound up a vegetable.
Right, so spot on, on my situation you are, arent you??
geez people, if you don't know what to say in such a situation, just a nod is enough. Verbal diarrhea, (yes  diarrhea, the perfect word) spewed out nonsense is more annoying and damaging than the problem itself.

Even on my worst day, I can still find something funny.
I still find something to joke about, even when I look back at what my family has been through for the last few years.

I thought I had successfully developed immunity to these few human emotions.
And then today, suddenly, for no reason, after reading about complete strangers, tears welled up.

And it enraged me. And somewhere it amused me. The self made perception of "All is well always and I am ok" was about to shatter?? Through a irrelevant dumb book?? By reading stories of stranded puppies and kittens saved from burning houses??? Tears without my permission??

Maybe emotions and tears are like a long metallic spring. Fate has been keeping my spring under pressure for too long that now even the slightest toggle risks releasing its full potential??

Maybe, I still don't understand how my brain and heart works. I still work hard to keep them controlled but just sometimes, a single tear would not be that bad.

Every day I walk by the library and decide that I am returning the book. No mere book should be allowed to manipulate me so!! It simply has to go. And by the time I am about to enter, I change my mind.

I have walked that book upto the library doors so many times now. I really don't want it. It still walks back home with me. It sits on my desk and stares at me.
I can't read it and I can't keep it.

Confusing set of emotions we have..
Probably not all of my emotions are fully trained to follow my rules.. I still am human after all..

Good. I still am human.


Tuesday, 19 June 2012

Three weeks since switch on..

Yesterday, It has been three weeks exact since the switch on. Aarav has now started mimicking sounds.

He repeats sounds that are continuous and long (moooo says the cow) and those that are small and in bits (bhu bhu bhu says the dog.)

He uses vocalisation on and off as if its a conversation. Its still only grunts but still nice to hear.


Aarav had one more mapping yesterday. We be practicing sh, ss and mm more now on..

Monday, 18 June 2012

A Month after surgery..

14-June-2012

Today, it has been a month since the surgery and 2 weeks, 2 days since the switch on.
This last month has been way too fast and my thoughts have been way too cluttered to blog anything.
An emotional roller coaster if you will... I dint think it was smart to blog during the lows and I would end up rambling superlatives during the highs.. And I really don't remember any sane mood moments...
So finally today, after summoning up my lost writing streak, here goes...

After completing a whole month, I realized that I HAVE to blog else I'll be risking missing out on the little joys (and cries) of this month.
But to de-clutter my brain, so that I can start writing my blog has been difficult for some time now... so I am going to borrow a few common blogging styles..!!

Ten things to be happy about ….

1 - Aarav had no issues during, immediately after, and few weeks after the surgery. I had read that there may be headaches and nausea and facial nerve issues if anything went wrong with the surgery.

But Aarav has had good post-surgery health and the scars have healed perfectly well...
A big Big BIG thanks to our surgeon and her team.

2 - Our Audiologist gave us realistic expectations of what would happen at the moment of the Switch on.
Aarav may cry, may get scared, may cling to you, may not react at all...

So when the switch on was done, we were ready for tears... But Aarav dint do any of the above!

He blushed!!! He kept looking at the audiologist and every time she gave him "beeps" (the electrode switch on creates such sounds), on the machine, he looked at her and blushed pink, as if to say "I know you did that, dint you?"
That was a really happy day!

3 - After the switch on, Aarav could hear loud sounds.
Not all... just few ones. And it was a bit difficult to tell whether what he heard was due to the vibration of the sound source or the actual sound. So we had a lot of confusing responses.

Two days after the switch on, on the 31st May, Aarav and I were in the kitchen, I had just put on the rice cooker on the burner.

I was carrying Aarav, and we were watching the cooker whistle...
1 whistle - No reaction - 2 - no reaction - 3 - no reaction - 4 - no reaction... (Sigh, 2 more and the rice is done; time to turn off the burner...)

So we turned to the water filter and Aarav got busy filling pots and glasses with water.

He was still less than a meter away from the cooker, and it whistled again...
Aarav turned his head, with full force to look at the cooker... And watched the cooker whistle again and again and again!!

He heard!!! He heard it!!!

The rice ended up being soft as a paste as I kept the cooker whistling on for 10-14 whistles.
He heard it and it was totally worth it.
The cooker whistles for longer in our house now.

4- When Aarav started crawling and sitting up, we bought him a play chair. It made squeaky noises when he sat and got up.

It was not his favorite. Well for him, it was just a cushioned red chair right?

Last week, I wanted to take his ling sounds practice, so to make him sit in one place, I put him in the chair.


SQUEAK SQUEAK


Aarav was puzzled. What was different?
He got up to investigate.


SQUEAK SQUEEEEAK


He heard it!!!

After 8 months of having that chair, Aarav finally understood why we got that chair and he found it interesting!!!

And then each and every place where one can sit, the bed, the floor, pillow, another plastic chair and my lap was tested for squeaks.

5-Very soon my next door neighbors will be heard complaining due to noise. Aarav has started banging every possible object to see if it makes a sound.
(Eagerly waiting for people to complain :-):-) )
All utensils have found a new home in Aarav's play toys.


6-We are seeing a rise in the vocalization that Aarav now does.
He grunts and signs to communicate. These grunts were rare-to-zero before the switch on, now he uses them more often.
His grunts come for 'de' (give), 'bhu-bhu' (doggie). And then occasionally for bye, gone, no.
It is a beginning.

7 - I usually check his responses to the 6 ling sounds at home, and his therapist checks in his therapy session.
These are his responses.
aa - Responds very well.
oo - Not sure
ee - Not sure
mm - Not sure
ss - Not at all
sh - Not at all...

This will probably need a new map... I am not sure. It will be decided when we meet with his Audiologist coming Tuesday.

8- Aarav has started going to daycare for 6 hours daily which he seems to like. He enjoys playing with other kids his age.
Kaustubh and I, we have mixed feelings on this. The daycare is fantastic, that is not the issue. But after Insurance companies refused to pay, and with borrowed resources, two salaries have become inevitable.
But that is another topic and a long bitter one. A blog on this maybe a few years later.. or not.

9-My Mom had gifted Aarav an Alphabet board set. The alphabets come off and you have to fix it in the correct place again.
We were expecting that in a month half the alphabets would be either broken or misplaced.
I mean, come on. How would a 1.3 year old kid know the alphabet?
In three months, Aarav has practiced these and kept them very neatly.
This the snap from a few weeks back...

The latest situation is that Aarav now knows all the alphabets and can place them in their respective holes perfectly. In fact, he is even teases us by trying the C in G, or A in V and then looking at us to check if we are paying attention.

10- Life is still all hectic and chaotic, but now this madness has become routine. This is our new 'normal' and even though there are gloomy moments and unpleasant surprises, there is always a silver lining.
We have learned to like it.

Friday, 15 June 2012

So say the geek parents...

My husband and I, we spend 45 hours a week each finding, hunting and destroying bugs.
For the non-IT crowd, no real bugs here.
(don't worry PETA and dear govt, your job is still not being done by anyone..)


We are both into Software Testing. "Finding bugs" means that we test your everyday software for defects and make the software better for you to use.


Software testing is now an integral part of our lives. 


We think, talk and communicate in software terms now..
Any two software tester geeks meet.. they have this language. Its like a tribe with a culture and a social system. A new type of language if you will..
So, when I say a tribe-culture-languasge, what does it mean?


These are few bits of information that I can recall. These are during the last four months, when Kaustubh and I had to talk, in presence of other people, about relatively secret stuff...


After the first hearing tests..
K - What are the results?
J - There's a problem in the build. The basic Smoke test does not find the build suitable, basic functionality missing or critically broken. We need a detailed check on the this functionality.
K - (Long pause) hmmm. are you ok?
J - brain reboot required.
(virtual keyboard mentally banged into virtual monitor and virtual-anger+sadness scream added. All in mute mode)


After the Xrays.. and a little low on mood. 
K - Completed?
J - Yes. Done.
K - How was it done?
J - Gullivered Aarav down and took snapshots.
K - What snapshots?
J - I mean Screenshots.
K - Whaaat?
J - I mean Screenprints.
K - Whaaaaaaaat?
J - I mean the black photo where you see his skull, re baba!
K - LOL! its called Xrays!
J - (Mentally hit my self on the head)


Before we went to the hospital for surgery
I thought that the basic prerequisite to bringing home a sick recuperating baby, would be to clean his room and make it spotless.
So, dressed in cleaning shorts, Kaustubh's old tshirt, turbaned my head and duster in hand, I began from the top.
Where at the top? Cleaning the ceiling.


The husband knows me so well sometimes to my annoyance, that he magically appeared.


K - Wasn't the house just super-cleaned this weekend? What are you doing? We'll be in the hospital for 3 days, it'll be dusty again.
J - (brandishing dustmop like a sword) Must clean again. All must be clean. 
(duster hits fan -  dust from dustmop jumps out - room looks full of fog) You help??
K - (Showing his just-took-a-shower-clean-ironed-shirt + eyes roll in frustration) Sanity or regression??
J - Regression.
K - ???? We need to check Aarav's bag, his doctor files, food for the evening, your bag, other misc stuff and you need to take a nap because the next nap may be a few days later..
And 2 hours deadline to move to hospital.
(long pause - dust mop reads husband's anger and frustration reasoning and stops moving )
J - Sanity.
K - And you look like the dustmop.
J - Done. The room is clean and I am taking a bath.


Such are the benefits of Compatibility Testing.

Tuesday, 5 June 2012

First mapping!!!

Aarav's first mapping was done on 1st June.
Aarav seems to have made the connection that his implant changes are done by his audiologist. Every time he got some sound, he looked at her!!!

We had speech therapy on the same day. Aarav's therapist has now started teaching him to use his 'New ears'.. Its a learning experience for not just Aarav but for us as parents too!!
Our therapist is the nicest lady ever!!! Love her! She even came with me to visit Aarav's daycare, and spent time in the daycare, explaining to them about how to handle the implant, the dos and don'ts of handling a CI kid.
Such a lot of effort, who does that???
She's a sweetheart.

We are truly blessed to have met such good people!!




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