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! 😊 

#IFSBHCON2018

The 28th International Conference on Spina Bifida and Hydrocephalus #IFSBHCON2018
was organized by #InternationalFederationforSpinaBifidaandHydrocephalus #IFSBH in collaboration with the local body, Spina Bifida Foundation India #SBF.
It was held for the first time in Asia in New Delhi, India, from 10th August to 12th August 2018. It was a resounding success and Vineet and us were privileged to be a part of this important Conference.
There were representatives from Belgium, Switzerland, US, Canada, Norway, Uganda, Ethiopia, Zambia, South Africa, Sri Lanka, Taiwan, Malaysia, Spain, Tazikistan, Vietnam among others(25 in all I'm told) and of course from various states of India.(Sorry if there is something wrong in the list, but this is what I've gathered) 😬 The venue Le Meridian in New Delhi was as impressive as the participants. Parents of children with SB, adults with SB and high profile Doctors and Surgeons held parallel as well as plenary sessions relating to the numerous topics that Spina bifida brings with itself.

10th August 2018, Friday
When we checked into #LeMeridian #NewDelhi at Connaught Place around noon, we were captivated by the beauty of the place. Lunch was being served and after lunch,we proceeded to the Conference Room just beside it. Here I would like to mention that the Conference Rooms in Le Meridian,   New Delhi were in the basement at minus one floor and to reach that, you had to use the Service Elevator for wheelchairs. It wasn't much of a problem except that during those 3 days , we sometimes encountered the pantry car or the laundry car.
So, going back to my post,
A session was going on which was in collaboration with WHO and Neural Tube Birth Defects and the President of the International Federation for Spina Bifida and Hydrocephalus, Dr Margo Whiteford had already started the introductions. I saw some familiar faces (from Facebook and Whatsapp)and we met for the first time in person. It was like as though we had known each other since long. We introduced each other to others as well and settled down for the sessions which carried on till evening. I won't go into the details of the sessions here as the post will become very long. However, for those who might be interested, HERE 's the link to the programme brochure as put up on the Facebook Page of the IFSBH.
In the evening we had the very 1st National Committee Meeting of the Spina Bifida Foundation of India and as many as 13 State Chapters of the Foundation were formed to reach out to all states of India in creating awareness and preventing spina bifida which is still unknown about in our country. And if I might brag a bit, I've been nominated to convene the state chapter of West Bengal. A new begining... I'll try my best!

Here's the link to a few pictures I posted on Facebook (which is why the quality is not so good) - https://photos.app.goo.gl/tj5EDSBzy8uaSRej7

11th August 2018, Saturday

The next day our sessions were scheduled to start at 8 in the morning, but everyone had had a tiring day before, due to travels and such. So we finally started a bit late and I was eagerly waiting forward to hear from a host of very impressive speakers and #IraSinghal was one of them. I sat through each of the sessions coz I was very interested in each of them and the topics were as varied as the speakers. I was even asked to monitor one of the sessions and I gladly obliged to my utmost pleasure. 

     Towards the evening arrived #RaveenaTandon , a famous Bollywood star, and also the brand ambassador for #spinabifidafoundation . She is very supportive of all the events that the Foundation hosts and has a very golden heart. She even obliged all the kids with a group foto.

         After she had left , we had a group foto and look how diverse we are. I feel empowered to be a part of this big and beautiful family.

         That evening we had the Conference Dinner and I had taken permission from our Founder Dr Santosh Karmarkar, for Vineet to play the Octapad for the guests. And boy did he play! Vineet had accompanied us to the Conference only because we told him he would be playing for the guests. He played and enthralled everyone and they all became his fans! That evening , everyone came to know about Vineet the musician and I couldn't be more proud! 😊 Here's the video -

And here's another video to show you all how much we enjoyed that night with the DJ and danced away our blues and worries..😃😍
https://www.facebook.com/jacqueline.r.victor/videos/10217441007921877/?l=9166364116643071576

I for my part had gotten very very emotional that night..but that another story..

12th August 2018, Sunday

Today was going to be the last day of our wonderful Conference and it was a bit heartbreaking, coz we were just getting to know each other and so were the kids. Today there was a tribute to Mr #JavedAbidi , the pioneer of Disability rights and advocacy in India and he had Spina Bifida. May his beautiful soul rest in peace 🙏. Also there were 2 videos of a child and an adult with Spina bifida in India. Then at the very end I gave my speech for which a topic had been given to me beforehand - "What I want to tell my Doctor - A Parent's perspective"

Here it is - https://www.facebook.com/jacqueline.r.victor/videos/10217373013222052/?l=4828727102902456145

It was finally time to thank and say goodbye to each other and even then, we couldn't finish. So much to say and share and so less time! Here's hoping that the next National Conference will be longer and we will spend some more quality time with our new family in India.😊

So Thankyou once again for joining Vineet's journey here, looking forward to more happy times with my boy!

(And please do let me know in the comments if I've made any mistakes or do write to let me know what are your thoughts, I would love to go through them!)

Another milestone ! Vineet passed his Class 12 Board exams!

So now in the month of February, 15th February to be precise, Vineet's Secondary School Board exams were scheduled. He had a total of 7 subjects to appear for and he needed to pass in 4 of them apart from English Language and Literature which were compulsory.

Like before ( during his Class 10 Board exams), he was provided with a writer from a lower class. We waited for his results patiently for about one and a half months and on     May, the results were declared. Vineet had managed to pass! It was a great feat as this result was all his own hard work. Vineet is an intelligent boy, but has problems coordinating his learnt studies into answers for an exam. Orally he has no problems, but it's tough for him to construct and write an answer for exams in the way it is wanted/required. Nevertheless, we as his parents and Vineet too was happy that he had passed. Just passed.

Now came the important decision to be made- whether he would continue with college or not. Vin had already decided that he would not pursue studies anymore and concentrate on his music classes. So I enrolled him for his keyboard and guitar classes nearby.

Some well-wishers suggested long distance education for Vin as it would enable him to have a college degree as well as his health would not be affected by regular college. So we are thinking of going ahead with this .

So that's the latest happening in Vin's life . Thank you all for being such an important part of Vineet's journey.🙏

HAPPY NEW YEAR !! (SORRY, I KNOW I'M LATE ...)

Hey everyone! Wishing you all a Very Happy New Year! I know its a bit late in the day,😛🤦 but this being my first post for the new year, I had to wish first ...
So I think I left the story about Vin's broken leg incomplete. I shall continue now.
After about a month,  on 25th November 2017 (Saturday), we went for his X-ray to check if things were okay,  and we were pleasantly surprised when the technician told us that Vin's leg was perfectly healed!  He suggested we call him in a day or two to remove the cast. But papa said he'll do it himself! So next day in the evening,  papa removed  his cast. The main reason for hurrying was that Vin was going to perform in his School's Annual Function on the following Tuesday. It would be his last performance in school , and he as well as his Band friends didn't want him to be left out. Vin even went for the final rehearsal a day before with his legs in the cast! What else can he do for music! 

So after removing the cast, there was a problem. His knee wouldn't bend. The doctor said it would move only after physiotherapy for 3-4 days. But Vineet being Vineet, he still went for his rehearsals after 2 days with a knee bent at 30 degrees,and not 90 degrees🤦, with a tool at his feet. I hope I get the pic/video of that rehearsal when this post is ready😅

Concert was fabulous and Vin had a great time playing with his band, though I was worried about the leg. So as soon as his song got over, I brought him back home to his leg settings.After a week or so with regular physiotherapy, the knees were finally bending as before. Praise God! 🙏

Here's the link to the video -

https://youtu.be/g4XsWfzGV54

Vineet goes to JUSTIN BEIBER' s CONCERT in Mumbai, India (The Event)

(This is the second and final part of the post - " Vineet goes to JUSTIN BEIBER's CONCERT in Mumbai, India". For the previous post, click HERE )

And so as the story goes, we reached Mumbai on 9th May. It was hot and humid as hell though 😣😖 and I wondered how on earth did a young man like JB who hails from cold Canada, was so sweet and humble to agree to come down to India for his fans for the very first time! So on 10th morning we saw on the TV that there were some fans who had started camping since early in the morning at 5! We had a problem - To be able to see JB from the very front row of the Silver stands (of which we had tickets), Vineet would have to be there very early on. But to be early on was going to be a big problem for Vinsy due to his toilet habits and of course his fooding and they were not going to allow outside food as well. Big problem. So we thought and thought and finally decided that 2 members would go early on and keep place for the rest of us. Only when they reached the venue they called us saying that if you didn't stand in the queue now (that was 10 o'clock in the morning btw! and the concert was to begin at 3:30 in the afternoon and JB was to come at 8 in the evening!)😵 you couldn't reach them at all! So off went the second lot except Vin and papa and we all got decent places at the front of the queue. Now we waited, and waited and waited....until 3:30 p.m. With just packets of chips and water being sold at exorbitant prices. 👿The queue was long and I told Vin to proceed from the hotel only after we had gone inside the stadium.
                    So as the story goes, we managed to get the first row of the silver stands and were happy that it was quite near to the stage. Then I realised that there was No Way Vin would be able to reach us through the massive crowd which was already crushing us all who were in front, to the barricade! I realised there had been a mistake. This was a mistake coz Vin wouldn't be able to see the concert except on the LED screens that had been placed right and left of the stage. I felt let down, unhappy, weak and a bit angry at myself for planning this entire thing while Vin would be unable to see the Concert with us, and JB would be out of sight as he would be sitting in his wheelchair right at the back. I thought of the outlay of the stadium at Bern, Switzerland ,when I was going to book the tickets to JB's Concert there earlier, and how there was a special elevated place in the stands for people on wheelchairs. I was depressed and waited for Vin to come to the stadium. Unfortunately network jammers had been placed and I could not contact him or his dad at all. And to go on a search would mean getting the kids crushed by hyper-over-adrenalined-teenagers!! So I endured it all along with the heat, humidity, sweat et all till at last when JB came on the stage, and I thought the front row kids would be trampled upon!! When I saw Vin's sis about to faint (!!) I pulled her out of the crowd and made our way towards the exit. As we made our way away from the crowd into free space (and fresh evening air!), who do we see but Vin!! Enjoying the show with dad watching it on the huge screen in front. I smiled for the first time in the evening. When Vin's fav songs came up, papa dear would scoop up Vineet to show him JB on the stage - as a tiny blob from so far.
                       And at this part of the stadium, there was a beautiful crowd who were singing and sometimes dancing with each other and we too held hands and danced together. Papa bought us pizzas and life was good👍 once again!! Vinsy told us how some reporters took his fotos and one even interviewed him! Then the show came to an end around 10: 30 p. m. and as we made our was out of the stadium along with the enormous crowd of around 30000 people (which we came to know later),  Vin had another interviewer.
               Nevertheless,  it was a memorable day for all of us, though Vin was a little bit disappointed at not having been able to meet #justinbeiber.

Click Here to watch one of JB's performance that I uploaded

Click HERE to see some of our pics of the Concert

A small afternote about Mumbai Airport regarding our wheelchair number 9 (Same as wheelchair number 7 which got spoilt as we forgot to take it out from the car boot after our Puri Trip 😬😒-

Previously in our air travels we had opted for the airport wheelchairs and submitted Vin's wheelchair with the baggage. This time Papa said we'll take the wheelchair along with us to the aircraft. Bad decision. The X-ray machine for wheelchair was not working at Mumbai airport - can you believe this! Then finally they got hold of the person who was supposed to operate it and it worked 😑 Then they looked around for a Security personnel to put the " Checked' tag on it. He couldn't be found as well. We were taken from one end of the place to another and finally back to find THE Man who had to be convinced to put the tag on Vin's wheelchair as if there was a missile hidden in it.  I really don't understand the paranoia in airports regarding the specially challenged and their external aids (which are like the missing parts of their bodies) Then we proceeded to our own security counters wherein Vin was scanned again with his wheelchair,  which is okay.