New AFOs for Vineet !! (Blog dated 13th February 2020)

Hello everyone!
Happy New Year!!
I know I know I'm late as always😜but since this is my first post for the year, better late than never 😊
I wonder if I've ever made a post about Vin's AFOs  Nevertheless, here goes...

So the first pair AFOs that Vineet got was in April 2007 when he was 8 years old. Before that , at the age of 5, he was put on 'Dennis Brown Splint' to cure his slightly clubbed feet and to rotate his hips inwards at the prescription of the only proper Orthotist we have here in Asansol.

Dennis Brown Splint no. 1

Dennis Brown Splint no. 2

No, I'm not going to refer him to anyone as he's ridiculously expensive even though he may be good. Good part of the story is that he was the one who referred us to "Mobility India"  in Kolkata. That place was very good and reasonable and we went there twice for Vineet's AFOs as he grew older until in 2018 when he outgrew the 2nd pair .We wanted to get him new ones but  came to know that that place had shut down for repair and construction works. In that emergency, we went to our old Orthotist who gave us highly (read 'ridiculously high') priced options and we never went back.

AFOs no. 1

AFOs no. 2

In short, the material for AFOs are of various types and designs. Some patients who can walk also need AFOs and theirs is different from the ones Vineet wears as he has no walking needs. I won't go into the details here

To the rescue - AMAZON !

I was so proud of myself when I got a pair of  AFOs online from Amazon for a very reasonable price  (Rupees Two Thousand four hundred for a pair).But later I realized, these wouldn't work as a lifetime option as the foot part was generalised and had no 'Left' or 'Right' ankle option... I began noticing a slight bend in Vineet's big toes and I stopped making him wear them immediately.

AFOs from Amazon

Moving on...

     I did some online research and after reading reviews and pricing, we zeroed in on " Ottobock". We took an appointment on 20th December 2019 for the measurements in Kolkata. We were impressed by the clinicians who took the measurements in a very professional way and they did not take much time at all! We opted for a real snazzy pattern chosen by Vin from the many options given.

                              

We were asked to come for a trial fitting after about a month , the date they would let us know later.


                               Fast forward to August 2020

We still have not collected the AFOs (as of today, 26th August 2020) :(

Well actually, we had gotten a call from Ottobock Kolkata that the AFO was ready for trial in January 2020,  but PROCRASTINATION has its evils. And we are stuck with one of them. Grrrrr...... 

No, COVID 19 is not to be blamed here in anyway ! :P 

Here's hoping one day we will finally be able to collect the AFOs, will update in the comments when that happens.
Till then, 
#StayHomeStaySafe

UPDATE!!

So on 12th January 2021 we finally made that trip to Kolkata and collected Vineet’s newest AFOs. We had to wait for around 2 hours for the final finishing, but nevertheless, here they are! 

They look smashing I must say ! 😍 

Now Here's my 'Mommy Tip' for parents with kids who use #AFO s 

and people who use them-

I had been meaning to tell the Orthotist at Ottobock to not paste the silicone attachment to Vineet's AFO but (inevitably) forgot 🤦🏻‍♀️ I had in mind since long that I would use that attachment separately to be used for "Normal" stylish shoes as its difficult to insert the whole AFO with the silicone attachment, into them. So by the time I remembered this, we were home after a 4 hour car journey from Kolkata. But as some of you know me, I never give up on 'trying'. So guess what I did? I tried removing them myself using a blunt knife (which I didn't need thankfully!) It came off little by little and I was relieved to see it was not melted and pasted, rather there was a very very sticky tape kind of thing, so it came off neatly. And Walla! I had both the silicone attachments as a separate thing just the way I wanted ! 😎

So even though it was 11 p.m. at night, I excitedly tried them on Vineet's latest Red 🤩 Christmas shoes and they slid in so neatly !! No more red, bloated big toes due to inward folding inside shoes which did not have a zipper as in #BillyFootwear shoes 👍✌️

Billy Footwear not closing in with the AFO

Billy Footwear neatly closing with AFO silicone attachment only

Adidas shoes neatly fitting in with AFO silicone attachment only

SO now he wears the whole piece at home and we will use only the silicone part for outings 😎

Thankyou for going through🥰 Please let me know your thoughts in the comments about my tip though 🤓

Disclaimer - Vineet is totally Non- ambulatory , so this adaption works for him 😌
Also tagging @adidas to request them to make #adaptible shoes like the others

Inaccessibility in 2019. 👎

March 01, 2019

So this is the post I spoke about in my last post about Kolkata - Inaccessibility in 2019.
As I said before, we went to meet my long time friend Sita from the US who had come down to Kolkata only to meet us! She was staying in a hotel near to the airport and had suggested we do the same to save on time travelling from one end of the city to another. I was more than happy to oblige. Only, we did not get the same hotel as it was fully booked. But on reaching the area, we found that the hotel we had booked was exactly opposite theirs! It was great.

(Image courtesy - Google)

So when we reached our hotel, a grand flight of stairs greeted us at first, but wait, there was hope. A little further down the parking was a small ramp to go from the road to the pavement in front of the hotel. And then another longer one to go from the pavement to the hotel. Yay!! But wait, a car was parked right in front of the small ramp to the pavement 😑😑😑
Of course I took a pic! 😬😈

Poor papa had to go even further down and then find a place from where Vin's wheelchair could go up easily. So here the hotel had made all accessible arrangements, but the general public is uneducated where accessibility is concerned.

Vineet's wheelchair was helped up the ramp to the hotel by the guard and another staff, which was very nice , and we checked in. A lift (which was not too big for 3 persons including a wheelchair ) ,took Vineet and papa up to our room on the 4th floor. It was a nice room where there was space to maneuver Vineet's wheelchair.

(Images courtesy Google)

I had called up the "Floatel" restaurant on the banks of the Hoogly river for our dinner with Sita and family,as I had heard that there was a beautiful view of the river Ganges from the deck there.

I called up their reception to ask if they had a ramp or lift for wheelchairs to go upto the deck, to which they replied in affirmative. I also asked friends who had been there, they were not so sure. I asked on Google places, there too I got some saying yes, some no , with regard to wheelchair accessibility. But after the restaurant's confirmation, we decided to go ahead.

Sita and family were already in the restaurant when we reached (late, as always 😅) . And I was not prepared to encounter what I saw. At the very entrance, there was a flight of 2 steps, which papa is used to maneuvering by now, but not once did the man at the counter right across, come forward to help. 😶😒

Anyways, moved ahead a corridor and came upfront to a small wooden ramp which led to nowhere,and then just beside it another wooden plank which finally led to the King of all ramps!!!

Never in my life have I seen a ramp as steep as the one I saw that day!! A voice inside me said, no , you can't allow Vineet's wheelchair to go on that . No. Then I thought about Sita and her family who were already seated down below, and also , a few staff came forward to help. With a very very scared heart, I watched papa bring Vineet down the ramp facing the opposite way, with the help of 3-4 staff. And stairs again at the bottom of the ramp 😬😒😶

After that there was a small lift which took Vineet and papa to another corridor who's doors led to the restaurant. Phew!!
But all the stuff that was boiling inside me vanished as soon as I saw my dear Sita's face at the door!! I was finally hugging my dear friend of more than 10 years from another country !! It was an indescribable feeling.

We settled in and I took some time to relax and realize that just beside the restaurant a door led to a small deck outside. I asked Sita if we could go and sit there but was informed that it was crammed and a few tables were booked as well . Gone were the dreams of sitting on the deck and enjoying the view of the Ganges with my dear friend and her family.......😞😖
Nevertheless, we had an awesome time talking and having the buffet dinner. After which we proceeded back to our hotels and planned to meet for lunch at a nearby mall the next day.

#CityCentreMallKolkata

(Image courtesy - Google)

The next day, after having a great chit chat at the hotel where Sita and fam were put up, we proceeded towards a well known mall -  City Centre Salt Lake, Kolkata, for lunch.
Again. Embarrassment.
There was no ramp from the road to the pavement. 😬

Ok, that's normal to expect I guess..,😒

We had to go to the 2nd floor, so we searched for the lifts. Got them.
Then again - A huge step leading to the lift section. A very narrow door , through which Vineet's and Esha's wheelchairs barely managed to scrape through.

  By now I was seriously thinking of putting in a complaint. Thankfully the lifts were big in size and could accommodate one family with a wheelchair at one go . And there were 2 lifts (only. For such a huge mall)

So we ended up roaming on the ground floor more and finally after a fast food lunch 😜, we sat for some awesome tea. I was having mixed feelings as we were leaving for home from there itself and the Kumars would be leaving the next day. I felt so sad and empty coz it was too short a visit for a good friend like Sita❣️

{As I was about to post this, I just remembered the short and steepest ramp ever at the Hotel where Sita and Fam were put up. It was a ramp just for name's sake. To lure people like Sita who have no idea what a ramp could also look like in some hotels but on their websites they mention it and thus fool a customer, especially if they are from a distant country....whats this???? 😬😖😓   Not Done}

WHEELCHAIR NUMBER 10 (Blog dated 26th November 2019)

Hello everyone!!
I am super excited for Vin today, I mean ever since his 10th wheelchair arrived yesterday 😁

I had my eyes on this one for quite a while ever since I discovered it on https://www.wheelchairindia.com/Folding-Power-Wheelchair

I had been on the lookout for a power cum manual wheelchair with thick polyurethane tyres ever since we encountered the cobbled streets of Italy and most of Europe.

1) Let's talk about the choice of tyres first.
So the new rubberized wheels of folding, manual wheelchair number 9 started getting worn off within the first 3 days of our trip in Europe in 2017. It was kind of worrying and intimidating and we were extra cautious with his wheelchair henceforth as without his wheels, Vineet would be severely handicapped. And we too...
Hence the choice of thick polyurethane tyres for travel

2) Next let's talk about the choice of manual cum power wheelchair.
So last time with the manual wheelchair, it was quite exhausting for Papa to push Vineet all the time as the folding wheelchair had very high hand rests and impossible for Vineet to push himself manually. Hence the choice of a power wheelchair which would also work manually, in case the motor got defective😬😬 In the website video, a person without disability was able to use this wheelchair manually as well without any problem.However , when Vineet tried it on yesterday, the hand rests seem a bit high and we have yet to try out with Vineet on a seat cushion if his hands reach the wheel rims..

3) Next we shall talk about the folding aspect.
Although Vineet's wheelchair number 8 (Karma KP 10.3 ) is also a power wheelchair, it is not easily foldable . We have to remove the battery, then fold the other parts as well .This new chair weighs 42 kgs which is actually heavier than wheelchair no 8 which weighs 37.5 kgs, but we needn't remove the batteries. Just 2 folds and it's ready to be tucked into the car's boot. So we can now go for a picnic and Vineet can enjoy on his own!! 😃

Karma wheelchairs are made in Taiwan and assembled locally so I'm told. But this wheelchair is not branded and has been directly imported from China I guess, which is why the costing too has come down to half of wheelchair number 8. And that counts. The cost. While searching for this particular type of wheelchair I stumbled upon the website alibaba.com which is the gateway to Chinese products directly from the mainland. Anyone who has visited this website will know how ridiculously cheap the stuff there are. Of course it's a wholesale market and there are MOQs (minimum order quantity). But if you order a sample piece, the price gets doubled with airshipping. And even then, it stands cheaper than on Amazon or any other similar online shopping site. I could more on this with examples, but this post will become too long. 😛☹️So basically , this was a good deal for us, as when you have a person with special needs in your home, expenses touch the sky...But God has been good to us and we are ever grateful that we can afford to buy stuff that Vineet needs all the time. My heart goes out to those parents or children who's special needs are not fulfilled...
Friends, if you support any kind of cause from your hard earned money, do give a thought to children and adults with #specialneeds . #AssistiveDevices can be ridiculously expensive for most...

And a word for those who work for changes in society for a good cause, kindly do something to bring down costs of assistive devices. Thanks🙏

And Finally, The part I LOVE the most!!
When this wheelchair moves back, it has a beep warning sound . This is very very necessary in all wheelchairs. It is dangerous for people standing behind a wheelchair if it suddenly starts to move back. Of course there is a beep horn for front on the joystick pad as well.

So here's hoping that this wheelchair comes in handy for us as we love to travel,but we don't get a chance easily😒. Lots of things to think about and loads of planning is exhausting!! 😣 But then, we might as well make the most of it while we are still able to! 😊 

HAPPY NEW YEAR 2019

Hey everyone! Wish you all A very Happy New Year!!
New Year brings with it new hopes, dreams, aspirations and a mind waiting to begin afresh, anew...
So with these feelings we have stepped into another year and we were very blessed to start it with the blessings of The Almighty.
This year I hope Vineet will put some of his time aside for his first year graduation studies.As for his musical journey, he has decided to continue his Octapad and Guitar classes, but not the Keyboard class. No amount of persuasion could change his mind, so we've left him with his decision.

           This new year started on a very very HAPPY note for us! We got to meet my long time (read over 10 years!! ) online friend , Sita Kumar and her family, all the way from California , US. We connected via " Orkut " (THE Happening social networking site before Facebook!). Yes, we connected even before Facebook via the #spinabifida group therein.

Sita has a 16 yo daughter with Spina Bifida and boy, she is one sassy girl I know now 😂. It was a different thing to know Sita, her 'Super-hubby'Vinesh, her 19yo son Suraj and of course, Isha , in person. We met in Kolkata and though we only had one day , it was enough to connect and bond like family. With Sita, time spent was like old friends, but thats another story, and this blog is about Vineet..
Of course, time is never enough with friends... 😕

We had dinner together ,and cussed the inaccessible places together 😈.

 I was quite ashamed of how inaccessible public places in Kolkata was even now in 2019 😖 I did what I always do - took pics and posted them all over the internet.(Wait for a blog on the 2 public places we went to in these 2 days and how Inaccessible they were!) Thats the least I can do to raise awareness...PLEASE PEOPLE, try and put yourself in the shoes of the disabled for one day and you will know how difficult we all have made their lives by #inaccessiblity . IT IS NOT THEIR DISABILITY WHICH MAKES THEIR LIVES DIFFICULT.
 ITS THE INACCESSIBLE PATHWAYS

As I write this, Sita is on her way back home to the US and we are wishful of meeting again!! Amen to that!
It still seems like a dream to me now...

Sita and Vinesh, you guys are heroes without the capes and we were humbled by your visit...

So much to learn from you and the kids! Much love... 💖💞💗