Posts Tagged ‘kalyan’

Health worries: K1 and K2

April 25, 2018

of experience she has seen cases that are totally asymptomatic. She has seen an 80 year old patient who was completely unaware that she even had the condition and perfectly ok vision. She has seen children who came at the same age that ours did, are older now with no reported loss so far.

K1 does already have symptoms in that she has poor night vision – we started to notice this even at Age 2. But the doc today said that her central retina looks healthy and that her vision is good. She said that in unfamiliar environments, she will not be able to navigate in dim light. Yesterday’s doc suggested that she always carry a flashlight with her.

Today’s doctor also confirmed that genetic testing may help understand the prognosis (progress timeline) because there are a great many genetic causes for the condition. She also suggested that while there was no indication of need, for our peace of mind we could get an ENT test done as well.

K2’s condition is much more mild, and therefore, less clearly diagnosed, but changes on the retina still evident. Since it is so clear for K1, there is little doubt as to what it may be for him. She did not suggest that K2’s retina is at an “earlier stage” of the same thing or anything like that – basically his retina could become more affected with time or may not change at all. He has had no vision related complaints.

The doc didn’t recommend ERG (Electro Retinogram) for now because it is an uncomfortable procedure (electrodes inside the eyelid among other things) and if the kids don’t cooperate the results will not be accurate. She also didn’t recommend field testing (sitting in a ball and pressing buttons when they see lights flash around them to determine how much loss there may be) because both appear to have no loss in field vision at the moment. So we shall seek out genetic testing for the whole fam to see how much detail we can obtain regarding what genes are causing this and what science may already be or become available us.

The next step is to get them glasses for their nearsightedness (both have astigmatism and power) and come back for evaluation in 6 months. She stressed a balanced diet for them both, but specified that there was no known way to arrest the deterioration or affect the progress of the condition.That being said, we shall read and will likely ensure our diet contains things like Vitamin A palmitate etc. which have some reported success in arresting the deterioration. Also, we have well known Ayurveda centers specifically for the eyes, so we shall go in for a consultation.

If you know ophthalmologists first hand, or have direct experience with this condition, we welcome your inputs.

Two thoughts that are helping us at the moment:
1) Random crap can happen any time but the more notice we have, the better we can respond.
2) We are more than our bodies.

Please hold positive thoughts for both our kids to retain their vision; to remain as asymptomatic as possible, with either no deterioration over their lives or the least & slowest possible.

DnA

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Health worries: K1 and K2, 230418

April 24, 2018

This is what has been going on with K1 and K2, we were rather upset over the past few days, but now we are sort of accepting things and hoping for the best.

As of now, we have ordered the glasses for both the children, and the doc says the improvement in general vision will be perceptible, and that we should keep monitoring the condition every 6 months.

This upset us very much initially, but in a way, there is a relief in knowing that at least for the immediate future, there is nothing to be done.
=

Message from to our immediate family:

Yesterday (23 Apr 18) during testing for near sightedness and to get glasses, the eye doctors told us that K1 had a congenital condition called Retinitis Pigmentosa and K2 looked like he may have it too. At its worst, this condition causes loss of vision over time that could be complete, or just allow for tunnel vision (blackness surrounding a small area visible due to central retina functioning) by Age 35-40. This was devastating to hear yesterday and overwhelming to digest. The doctor had started telling us to “inform the children that sight is not the only thing in life” and that was very hard to take.

However, today, after taking a second opinion from Dr Savita Arun of Nethradhama, we have some hope that at its best, it could remain asymptomatic without much deterioration or loss or progress a lot slower.

Today, with second opinion, the diagnosis is confirmed for both children. The second doctor said pretty much all the same things that the doctors yesterday did, except with far more positivity. In her 18 years of experience she has seen cases that are totally asymptomatic. She has seen an 80 year old patient who was completely unaware that she even had the condition and perfectly ok vision. She has seen children who came at the same age that ours did, are older now with no reported loss so far.

K1 does already have symptoms in that she has poor night vision – we started to notice this even at Age 2. But the doc today said that her central retina looks healthy and that her vision is good. She said that in unfamiliar environments, she will not be able to navigate in dim light. Yesterday’s doc suggested that she always carry a flashlight with her.

Today’s doctor also confirmed that genetic testing may help understand the prognosis (progress timeline) because there are a great many genetic causes for the condition. She also suggested that while there was no indication of need, for our peace of mind we could get an ENT test done as well.

K2’s condition is much more mild, and therefore, less clearly diagnosed, but changes on the retina still evident. Since it is so clear for K1, there is little doubt as to what it may be for him. She did not suggest that K2’s retina is at an “earlier stage” of the same thing or anything like that – basically his retina could become more affected with time or may not change at all. He has had no vision related complaints.

The doc didn’t recommend ERG (Electro Retinogram) for now because it is an uncomfortable procedure (electrodes inside the eyelid among other things) and if the kids don’t cooperate the results will not be accurate. She also didn’t recommend field testing (sitting in a ball and pressing buttons when they see lights flash around them to determine how much loss there may be) because both appear to have no loss in field vision at the moment. So we shall seek out genetic testing for the whole fam to see how much detail we can obtain regarding what genes are causing this and what science may already be or become available us.

The next step is to get them glasses for their nearsightedness (both have astigmatism and power) and come back for evaluation in 6 months. She stressed a balanced diet for them both, but specified that there was no known way to arrest the deterioration or affect the progress of the condition.That being said, we shall read and will likely ensure our diet contains things like Vitamin A palmitate etc. which have some reported success in arresting the deterioration. Also, we have well known Ayurveda centers specifically for the eyes, so we shall go in for a consultation.

If you know ophthalmologists first hand, or have direct experience with this condition, we welcome your inputs.

Two thoughts that are helping us at the moment:
1) Random crap can happen any time but the more notice we have, the better we can respond.
2) We are more than our bodies.

Please hold positive thoughts for both our kids to retain their vision; to remain as asymptomatic as possible, with either no deterioration over their lives or the least & slowest possible.

DnA

Life with K2

October 25, 2017

K2, as I call Kalyan Mohan Shaffer, is an original thinker as all children are. Some examples:

K2, while getting ready for playschool: I want to be like the old pwesident of Amewica.
Me: Who’s the old president of Amewi..sorry, America?
K2: Obana (sic).
Father: The present president is older than the old president.
K2: Oh, Donald Twump is older?
….the things four-year-olds know!

K2: “Spell ‘thousand’, Deepamma.”
Me: “T-H-O-U-S-A….”
K2: “No! You are WONG! Thouzend…you have to spell it with ‘z’ and ‘e’. You don’t know ANYTHING!”
Me (humbly): “Yes…I am afraid so…”

K2: “You are WONG. You are saying ‘night’. There is a ‘k’ there, so you should say ‘kanight’ not ‘night’, Deepamma!”
Me: “OK, have it your way…”
K2: “No, it’s not MY way, it’s the WIGHT way!”

The blanket comes to life, 080717

July 8, 2017

Sometimes a blanket is quiet…

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But sometimes it becomes active…

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And soon shows its face!

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Life is made up of such joyful moments. This has been his favourite game with me since he was two!

Kolkata, Jorhat, Kaziranga, 07-130517

May 19, 2017

We visited Kolkata

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had an evening admiring the Victoria Memorial,

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enjoying puchka

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jhaal mudi

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and visited the family who brought me up.

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We visited Pradeep and Sulakshana Barthakur at their home in Jorhat, where they run a centre for children. (Pokamura, 7km from Jorhat)

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The location is

here

Their home is a veritable garden of Eden which they share with all kinds of beings:

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Bronzeback Tree Snake

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Blue-throated Barbet

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We went to Kaziranga National Park, staying at Wild Grass resort.

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Hog Deer

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Red Jungle Fowl

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Elephants

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Rhinos

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Swamp Deer (bArAsinghA)

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Here’s K1’s beautiful depiction of the elephant safari,

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where we saw so much of wildlife.

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The Flickr albums are:

Blr-Kol and visit

Kol, Science City and Gariahat Mod

Kolkata-Jorhat

Jorhat, 100517

Wild Grass, Kaziranga, 11,120517

Jorhat, 130517 morning

Jorhat-Guwahati-Bangalore, 130517

It was a memorable trip and I enjoyed it very much, through my own experience and that of my family.

To live without love

February 9, 2017

Who will drop loving kisses
On the cheeks of motherless children?
Who will hug them, tease them, scold them,
Tickle them, cuddle them, laugh with them?
Children need food and sleep…
And so much more, to thrive.
I sing two little children to sleep.
Tears fall from my eyes as I think
Of every child without parents in this world.
The refugees, the orphans, the lost children….
Surely the greatest cruelty in our world
Is to let children live…. without love.

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Chennai, 041216

Coming Out, 270914

September 28, 2014

Some people have trouble coming out of the closet.

But our Kallubhai has none at all, coming out of the kitchen cupboard.

The size of those feet amaze me!

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The proud “out-comer”

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The cupboard was NOT empty, by the way!

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Bubbles, 160914

September 18, 2014

We played with bubbles last evening.

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Bubbles in the sunset:

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I blew the bubbles, and Kavya hunted them down:

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Kavya did her share of blowing:

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Some bubbles rested, ever so delicately, on the grass:

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Some even survived landing on the concrete:

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Mother and son arrived, and he joined in:

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What can define “delight” better than a child looking at a rainbow bubble?

A birthday card….STL, 310514

June 5, 2014

KTB drew these for her father’s birthday…

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KTB is on the right, in her “Elsa” dress (made for her birthday by her father’s mother), giving the card to her dad; her mother is between them. Her little brother is very little indeed, and her friends Ananya and Aditi are only slightly larger!

This one seems to have a lot of hearts in it, and a nice message!

bday card 2

The flowers of my life, and my hope for travel….

May 27, 2014

My daughter just posted this on FB…so I cannot resist sharing the flowers that fill my life with beauty, colour, fragrance and sometimes a lot of peskiness…

kk 260514

I went through a fairly thorough personal interview at the Swedish embassy about my proposed (and already paid for!) visit…and I told the lady about , , and …she even took down everyone’s LJ id’s….and how I hope to meet all of you in Sweden.

I am not sure I did right in saying that my plans for travelling in the Schengen area are a little fluid. But that’s the way it is…so…that’s votIsed.

Oh well…hope to meet all of you….I may not be able to see your LJ’s all the time or comment…but you lot are true friends and you are one of the main reason why I am visiting (or trying to visit) Sweden!

Also add Deepak and Sumana Vastare (who live in Goteborg with their 7-month-old son Advik) to the list….

Can’t type too well because I have my fingers crossed, and my eyes, too! The decision will be made, and the yes or no stamped on my passport, which I can collect from the Embassy tomorrow, at 3pm…