Posts Tagged ‘children’

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

A special outing, for special children. Ragihalli, 160318

March 16, 2018

Today (16th Mar, ’18), I took the children of

Snehadhara Foundation

for an outdoor/nature trip to Ragihalli. Was the trip worth it? Emphatically, yes! The children smelt some fruit, felt the texture of some leaves, got distracted by the butterflies…and took care of each other in the most heartwarming way.

The children had visited Lalbagh and Cubbon Park and wanted to go to “actual forest” as one of the more articulate children put it. Certainly, Ragihalli, in the Bannerghatta National Park, fit the bill!

We started from Snehadhara, in J P Nagar, at about 8 am,

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and though we navigated Bannerghatta Road quite well, the road deteriorated as we approached Ragihalli, and indeed, with road-laying work, the road was blocked at the village itself, about 3km short of Adavi Field Station.

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Nagesh, Dhanu, Shivanaja, and Akshath took care of us while we were there. Dhanu,

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whose father Manjunath runs the eatery in Ragihalli where we always stop for piping hot thatte iddli, is quite a keen birder himself, having Akshath as a senior in school, and being trained by him.The field station is willing to conduct bird walks in the area for those who are interested. I took the children from Pramiti School there last month, and so had no hesitation in taking the Snehadhara children there. (Though if I’d known about the road condition, I might have asked for two vans rather than a large bus.)

Our bus negotiated the drive-around with difficulty. It also happened that the area had no power since 5pm the previous day, so Nagesh, his brother Shivananja, and my other friend Akshath….all their phones were without charge, and unreachable.

However, we reached after a delay, and before Akshath took us for a walk, we had a little bit of loosening up and a game of “actions” under the large banyan tree.

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Our walk led us through the mulberry plants, and under large trees, to a rock formation where we sat peacefully,

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admiring the view over the hill ranges of the Bannerghatta National Park.

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Though humid, the cloudy weather enabled us to sit outdoors without worrying about the heat of the sun. We walked back to the field station, where the children had their lunch,

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and then slowly drove back from the scrub jungle of Ragihalli to the concrete jungle of Bangalore.

I showed some children and adults various wild flowers, put together in a tiny bouquet

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cultivated ones like this Pomegranate,

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Cotton

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plants, and some birds. The children definitely seemed to enjoy the outing. We got a few fresh mangoes,

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and I feasted on fresh, sweet tamarind from the trees. My personal delight was sighting a rare tree (Firmiana colorata,also called Coloured Sterculia, the last two photos of the album) on the way home through a route that bypassed Ragihalli (the actual village).

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Thank you to Snehadhara for providing me with this opportunity to interact with the children. Sunny temparaments like that of Aravind (always with a smile on his face, and so curious about my camera and binoculars!), and quiet personalities like Karthik’s were equally fascinating to watch. And…I found that Swetha was my neighbour! The teachers
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were so patient and loving with the children, and there was so much happiness in the air!

The cloudy weather ensured that the children did not tire, and it was a very enjoyable trip indeed.

My photos are up on my FB album

here

No…I didn’t click the birds or the butterflies…I was concentrating on the children this time!

On Monday, all going well, I will be taking the wheelchair-bound children (who could not do the Ragihalli walk) to the IIMB campus, where very different kinds of minds will meet, as IIMB kindly allows me to bring special children into an academically high-performance campus for the first time.

Ragihalli with Pramiti School, 190218

February 19, 2018

I took 16 children from

Pramiti School

to

Adavi Field Station

AFS. Adavi Field Station, Onte Maren Doddi, Ragihalli (Post), Anekal(Taluk), Bengaluru, Karnataka 560083

Here’s the view of the beautiful rock formations of Bannerghatta National Park from the road:

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Anand and Mahesh were very helpful. The farmer, Shivananja, showed us around his land, talking about how they use cowdung as manure since it is plentifully available (leaf litter is not specifically composted here).

Here is Sushma, discussing composting with Shivananja, Anand and Mahesh, with little Varsha, who had a slight fever and did not go to school, listening:

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Nupura

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and Tarun

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kept meticulous notes. We were also shown around, and we really did go around the mulberry bush!

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We saw how the silkworms feed on the mulberry leaves

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Mulberries when ripe are very sweet to eat, but it was not yet the season for them.

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Shivananja showed us one local variety of mulberry, not favoured now as the leaves are smaller and the foliage less dense.

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Here’s one worm, growing fat (the worms eat voraciously, growing many times in size, before pupating)

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Here is the pupa of the silkworm; the pupae are boiled alive to extract the silk.

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The farmers sell the live pupae, which are plucked from the palm-frond frames, directly. The boiling and reeling are done later. Here is a video I took long ago, of the stinking silk waste being picked up by Brahminy Kites:

The children settled down for the packed lunch that had been brought:

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The stuffed parathas were tasty.

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We returned back to the waiting van

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You can see the rest of the album

here

The highlights, for me, were spotting an old friend, Ashwath (second from left)

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a Black Eagle

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and a sports-car-bus:

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Nature walk for Munchkins Montessori, Puttenahalli kere, 151217

December 15, 2017

Letter to Chanda of Munchkins:

Hi Chanda,

The walk went very well. It was very nice to meet Priti, Mythili, Anna and others.

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List of various beings seen:

Birds:

Cormorant, Great

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Cormorant, Little
Egret, Cattle
Egret, Little
Heron, Pond
Kite, Common
Moorhen, Purple
Sunbird, Purple-rumped
Tailorbird, Common
Warbler, Greenish

Butterflies:

Bob, Chestnut
Cerulean, Common
Castor, Common
Emigrant, Common
Jezebel, Common
Lacewing, Common (eggs)
Leopard,Common
Pansy, Lemon

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Lime, Common
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Tiger, Plain
Tiger, Striped
Yellow, Common Grass

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Fishes:
Tilapia

Insects:

Bees
Damselflies
Dragonflies
Spiders
Wasps

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Trees and Plants

Bougainvillea
Badminton Ball
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Date Palm
Fig Tree
Honge
Mahogany
Neem
Pride of India
Sampige
Singapore Cherry

I talked about leaf composting, clearing weeds in the lake, the way birds’ beaks have different shapes, water and woodland birds, differences in leaves and tree bark, and about how much effort it takes to maintain a lake.

When I conduct walks I generally take far fewer photos. I have posted the photos on my FB album

here

Please share this link with the others.

Looking forward to future association with all of you…the children were truly delightful!

Cheers, Deepa

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!”

For life to begin

August 31, 2017

In an empty, silent house
I wait for life to begin.
Life will arrive
With the first young child
Bubbling over with tales from her school.
I make sure she eats the rest of her lunch.
While listening to her,
I make preparations
For the evening meal.
More noise, more tumult
When the little boy comes in.
“Dwag me to the bathwoom!” he yells
Glowing with the dirt of the day
Spent in playschool.
Soon, other children come in to play.
The house wakes up, is full of life.
Homework, Hindi, settling squabbles:
Bath, dinner, and a game or two.
I cuddle up to one, or both
As we say a prayer, or read a story.
The little, reassuring rituals of bedtime
Are done. Darkness prevails.
Peace reigns again as they lie asleep,
Hair tumbled over pillows, arms askew.
Life sleeps now, but will be up tomorrow,
Getting ready for the day, again.
Awake and asleep by turns, this house
Is the home of the future.

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.

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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.