Posts Tagged ‘families’

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

Look carefully….

August 2, 2017

Look carefully at your mother…she’s the person you will probably become.
Look carefully at your daughter…she’s the person you probably were.
And both of you, look carefully at the grand-daughter…she’s probably going to be more than both of you.

DSDSC06569 kiss  purina farms 240813 bw dm bdiC06568 2

That should actually read, “parent”, “child”, and “grandchild”.

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.

Minnal Shaffer, 190108

January 19, 2017

In front of the waving grasses in an urban park
Facing the calm waters
Lies a small brick, upon the ground,
That carries your name.
O dear one, my firstborn’s firstborn,
You went away before you even came into this world.
Souls of great ones, our scriptures say,
Do not have long to spend on this earth.
Coccooned within your mother,
You had very little time.
But you were here long enough
For us to love, remember, and cherish you.
You remind us how every live birth,
Every normal child,
Is nothing short of several miracles.
You were a lightning flash that touched our lives;
But,like lighnting, you had great power
To open our eyes to the fragility of life.
Your home in our hearts is eternal,
As is that of every being whose lifespan is small.

K1’s progress with Hindi: Blr, 110716

July 11, 2016

She first looked at the Hindi alphabet in March of this year…and I think her progress (while handling so much that is new and tough) is excellent. Here she is (as usual, in the car!) reciting a Hindi poem about a bird:

Both my daughter and my granddaughter continue to amaze me….!

Jenga, and earthquakes…..

April 30, 2015

KTB is now the right age to enjoy simple card, board and concept games. For her birthday, this year, she was given the game of

Jenga

and cottoned on to it fairly well..but her Nanna managed to build quite an edifice!

jenga 260415

Pic: Anjana Mohan

I guess it takes an architect to work out how to keep the structure standing while removing something from its base…I know it’s beyond me.

I thought of how Jenga has played out, in such a deadly way, in Nepal….

Celebrating life, 101214

December 17, 2014

I just posted about the death of children, so I must definitely post about the celebration of life and a return to good health.

I went to Delhi to celebrate the 50th birthday of

(who doesn’t have the time to blog any more…)

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She is a true survivor,who’s battled loss and grief, adversity and obstacles, and done it with grace and a smile.

For both KM and me, she’s the only immediate family in India.

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She had one big party for her colleagues at work, and her actual birthday was a quiet day, with a visit to an old Shiva temple.

At week’s end, she was able to get together with many of her friends, including several people whom she’s known from childhood and had recently connected up with on FaceBook; it was a Loreto Convent Kindergarten reunion!

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The cake, organized by her brother Ravi and her cousin Nishu, was a wonderful concoction

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with edible photographs printed along the side!

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By the end of the evening, she was loaded with love and good wishes:

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And quite tired out, but still with that ever-present smile, even through the yawn!

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“AdhA hai chandramA, rAt Adhi” (the moon and the night are both half gone) we sang, as we went home…

KTB’s first recipe, 271114

December 3, 2014

While in Florida, KTB’s mother says, “she wrote a wonderful recipe at Thanksgiving that I wanted to share. She did this entirely on her own, and we applauded her effort and the whole family got to exclaim. This was her longest single writing effort, and we were thrilled at the confidence level that allowed her to get through a full effort like this, which is a level of focus we haven’t observed before….This translation should help.”

By Kavya:
Get the pot. Pat the pot.
Put the batter and mix
the batter. Put caramel apples
And a regular apple in it
And put a little bit of
sugar, then mix it and add
Honey if you want.

aa pat the pot 271114