Vineet's London-Europe Trip 2017 Day 3 ( Towards Paris)

7th June

When we woke up the next day with the sun shining brightly through the blinds,  I muttered under my breath 😜😅 This weather could have been yesterday 😠😫😭
Anyways,  we found that the front seats of our coach had been occupied again, and this time our dear co-passenger refused to give up his seat inspite of our Tour Manager's requests. So our Tour Manager gave up his own seat and some other good people shifted back to make space for him. He announced it in the bus that since we have a special child with us,  could everyone kindly leave the first seats for him and his dad on one side as he would not be able to have any front view which others could have by standing.

When we arrived at the border of U.K. towards France, we had to clear our Immigration. And here it was very kind and thoughtful of an official to come up to our bus and get it done for Vineet and our family without having to go into the building which was some way off.That was really really sweet of them! 😊☺

Anyways we moved towards the Eurotunnel. Oh and another thing!  This morning Papa had an idea- he suggested we put 2 diapers one on top of other,  so when one got soiled, we would simply remove it and there would be no hassle to put on the second one as we realised there were no changing beds in disabled toilets. It WORKED! 😃 Wherever we stopped for lunch we changed him - it became a routine for the next few days ☺

Into the Eurotunnel (From U.K. to France side)

In the evening when we were checked into our hotel on the outskirts of Paris,  we realised that even the lifts were of so small in size that only Vinisha could squeeze into it along with Vineet in his wheelchair. The rooms were also not wheelchair-accomodating, although I realised afterwards that maybe there were, but not available for us... So if you are planning for a similar trip as us, please do ask your Tour manager for a ground floor room or a specially-adapted room for people on a wheelchair. We got one only in Switzerland. 

Vineet's London-Europe Trip 2017 Day 2 (London day tour)

6th June

We had the misfortune of spending the only day we had for London in its infamous 'cold,  windy,  rainy' weather. 😣😖 It had started the evening before and we got our winter jackets and boots (which we had packed for our last tour days in Switzerland 😜😁) that day itself. I forgot to mention that our Tour Bus (merc-benz make) was not wheelchair-friendly . Means we had to transfer Vineet from his wheelchair to the bus seat and then stow it away in the luggage compartment. So everytime we had to get down,  we waited until the last person. But thankfully we had some very helpful coach-drivers who took out the wheelchair before us 😊😇 May God bless them🙏

So we packed Vin's "khichdi" and some cornflakes and left after breakfast. We were last to board the Tour Coach and guess ❓All the front seats were occupied (but naturally). Our Tour Manager requested those in the front seat to make a seat available for Vineet and also his dad as we had been cautioned the previous day about the speed of the bus which would have been risky for Vineet sitting on his own without an escort.

So we mostly moved around in the bus and by noon when we alighted to go into Madame Tussaud's,  the rains had stopped and there was the sun peeping through the clouds⛅

ANOTHER  SPOILER YET AGAIN AT THE ENTRANCE TO MADAME TUSSAUD'S 😒😑😕

As we queued up with our group,  the museum escorts led us towards the wheelchair-entry where we were told that they could not allow more than 3 wheelchair entries inside as there is space congestion. And that slot was full for that (our) time-slot. We would go in only after an hour and they gave us the coupon for that time. It meant that we would have only an hour to go through Madame Tussaud's instead of the 2 hours that our group got as the Coach would be back by 4 p. m.  to take us to London Eye. We went across the street for a pizza where Vinsy had his "khichdi" and we teased him about it 😛😁😄

           Then we roamed the nearby streets and bought some souvenirs, and finally it was time to go inside Madame Tussaud's again. We got an escort for Vin,  but he disappeared after putting us in the lift and telling us which the last leg of the tour was. Anyways,  inside it was really crowded and though it was wheelchair-friendly,  we breezed through it and we were very happy to see the Enormous Toilet for the specially challenged 😜😄😅😁 We changed Vin and heaved a sigh of relief😌

Then we got off at London Eye and here too Vin was led through the wheelchair entry and mummy and papa were too pleased with the handling of Vineet by the escorts😊☺

Then we proceeded for dinner and by 9: 30 p. m. when we returned back to the Hotel and saw the sun shining through the window,  we realised we were in a different world 😉😀

Here is a short video I made of our London Trip -

Vineet's LONDON- EUROPE TRIP 2017 Day 1 (Air Travel stories)

At Indira Gandhi International Airport, New Delhi, India

Our tour was to start from the 5th of June from London. For this,  we were allotted an 'Oman Airways' flight from New Delhi to Muscat (capital of Oman) on 5th morning at around 11 a. m. I made Vin's 'khichdi' in the morning before leaving and prayed to God it would pass through security 🙏 ( I had gone through a lot of posts online regarding what types / consistency of food that were allowed in-flight. We had breakfast and left.
       We opted for Vineet's wheelchair to be bubble wrapped alongwith our baggage and transferred Vineet to a wheelchair provided by the airlines as we had had a bit of a harrowing experience during our flight from Mumbai to Kolkata after the Justin Beiber Concert in May this year. (You can read about it HERE
         I was on top of the world when Vin's "khichdi" went through the security 😇😃😄 After a 2 hours flight we landed in Muscat Airport. We had a halting of about 2 hours and we raced to clear our immigration and we also had to feed Vin his lunch as it was past his time!  Add to that the emergency of changing his diaper as well. 😞
BUT!!
when we landed,  we were told we would have to wait for 10-15 minutes for a wheelchair to arrive. As we were short of time, we opted to carry Vineet from the airplane to the transfer bus. Only to find there was no wheelchair for us at the Airport gate!! I rushed in and asked the man at the gate where I could get a wheelchair and he pointed vaguely inside. There was hardly anyone inside and all our fellow passengers had proceeded towards the security counters which was quite some way off. I saw that Vineet's papa had been dropped off the bus with Vineet in his arms and panicked and proceeded to where I saw 2-3 airport lady workers to ask about the wheelchairs. Luckily by the grace of God,  at that instant Papa was shown the wheelchair room by some officials who saw him struggling. What the heck? 😠😑😒. We didn't get any airport escort for Vin at Muscat airport on landing and I thought to myself,  Wow,  and they call India a third-world country 😒😐😑

          So now we proceeded towards the security point but before queuing up, Vineet had his "khichdi" lunch. Now I was a happy mom 😊☺ We breezed through security and straight went for the washroom/toilet. We spotted the 'disabled'- toilet and YET Another obstacle!!
WE COULDN'T CLOSE SHUT THE DOOR AFTER WHEELING IN VINSY!  😧😯😖 The length of the toilet was too less to shut it back after wheeling in. In fact there was not much space to even push in the wheelchair unless it was folded. So now Papa had to scoop up vin, I had to fold the wheelchair and wheel it in, open it again and then Vin was seated again. We changed his diaper and wondered whether it would withstand the next 8 hour flight as it has a maximum holding capacity of around 7 hours according to Vin's water intake. We added another diaper folded into the first and hoped it would work.Keeping our fingers crossed, we proceeded towards the immigration and security again before the next flight which was also 'Oman Airways'.

 Now the boarding was grand 😏 You can see a video HERE
Vin was taken first into the airport bus.  Then from the bus we were led to the 'Hydraulic Lift Bus",  where Vin was transferred into the aircraft directly but then again had to be carried by Papa to his seat which was quite some space from the aircraft door. Anyway,  we were just relieved to be in the final stage of our long journey and soon we were served lunch. After around 4 hours of flying,  Papa asked the steward for some hot water for Vin and some baby food. We got a small packet of cereal powder mix,  but no hot water! 😠 They kept telling us we are looking into it,  but it didn't come. So I mixed some cornflakes in normal water,  let it soak for some time and then mashed it up for Vin. Then we all went in for a nap😴

                We landed at Heathrow Airport at around 5 p. m. G. M. T.  which was around 4. 30 hours behind I. S. T.  There was a long wait in this airport battery car as the escort had to collect all the specially challenged from our flight into it,to be taken to the immigration counter.We were hungry again and also worried about Vin's diaper,and luckily our Tour Manager, who took charge of us and the group at the airport,  settled us in our bus and took us straight to the Indian restaurant for dinner. There, our family was arranged to be seated on the ground floor while the rest of the group went up the stairs to the first floor. He made arrangements Vineet's hot milk and chapatis which I soaked as it was too thick to be had immediately.It was cold and windy with drizzling and we longed to be in the comforts of the Hotel soon which we did after dinner.By the time we had checked in, it was way past midnight !! (according to our Indian time watches and our bodies too!)

    And it was HERE that we learnt the FIRST LESSON of our Trip -
First we wheeled in Vineet into our Hotel room, then we started putting in the luggage one by one, and since the room was not so big enough, the suitcases got lined in the doorway and mummy went out to get another suitcase and 'BAM'!The door shut close behind her with Vineet inside the room with the keys!! OH NOOOO!!!! He couldn't open the door as his way was blocked and neither could we! As we panicked, Papa said he would go down and get the staff to open with the duplicate keys.As we were waiting for him to return, after 4-5 minutes, the door opened with a click from inside and Vin's face emerged and we asked how the hell did you do it??!! Vin said - I became Michael Jackson zombies from Thriller!! and grinned 😁😅 We went in and saw the suitcases lying by the sides. Awww.. I have a strong boy there 💪💪Papa came up (without anyone) and asked what happenend and we told him. From then on we decided that Papa would keep both  the room keys with him and Vin should never be alone in the room ever.
Hmmmmm. Aye Sir 😌😊☺
       
   

Vineet's First Overseas Trip 2017 (A preview)

Have I been waiting to write this very special event in Vineet's life or what 😃😀😀!!! It was a very special blessing by God in All our lives as we had thought of going on a Europe Tour sometime later in our lives,  but we had no idea that it would happen so soon!  This year itself!

            So going back a little into my earlier post on the #JustinBeiber Concert post, we were going through a  couple of travel brochures online just for fun,  and we stumbled upon this very attractive offer from #ThomasCookTravels for a Budget Europe Trip . We sat and calculated a lot of things 😌😀 and thought it was a nice deal considering our family of four.  We consulted friends and finally one day Papa clicked on the "Book" tab and there was no looking back then 😃☺
            To cut the story short,  let me just say that in the next few posts,  I will be sharing our travel details but mainly I will be focussing on the #accessibility issues and how we managed Vineet's incontinence. Also his fooding part. So if you are thinking of doing something as exciting (and adventurous 😁😜) as us,  you can read on and also contact us at - spinabifidainindia@gmail.com

P. S. - We stocked on Vin's diapers and all his stuff ( but naturally) and took 2 of each - one set for the main luggage and one smaller set for the hand luggage. We bought a small size 'Rice-cooker' for his daily "khichdi' lunch meal and rice and dal along with his fav cornflakes. I also took some meal supplements for emergencies ( airplane companies are playing up these days and can't be trusted all the time as I was about to realise 😒😒😑) And of course,  another folding wheelchair (coz the earlier one got spoiled by the sea waters of Puri)

I would also love to have feedbacks on these posts from travellers on wheelchairs and maybe some more travel tips and hacks for our future travels (hopefully 😊)

Thankyou for going through!  🙏💕

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. 

Vineet goes to JUSTIN BEIBER 's CONCERT in Mumbai! (Prelude)

Hello everyone! Been quite some time since I last wrote about Vinsy! And have we been busy or what! ! 😉 Awesome stuff happened and I shall start by first things first. I am going to write the story in two parts so 2 short ones will be easier to read as we are all short of time these days! 😃
             So early in Jan this year, we were toying with the idea of going for a trip during summer vacations this year as we had skipped it last year on account of Vin's Class 10 Board exams and then the results.We considered a lot of options and there were a lot of discussions and one day by fluke we clicked on the Europe Tour by a renowned Travel Company which was offering a very tempting early bird offer!! 😅

So I started to look around on the internet for some shows by artists or football matches in or around the places we were about to visit, and what do I find? A JUSTIN BEIBER CONCERT in Bern, Switzerland around those dates!! I got excited and started to search for reasonable tickets to the show there.I thought it would be an Awesome surprise for Vin 😊 Then one perfect day when I sat down to book the tickets, my cards wouldn't work! 😱 I tried and tried for half the night, but NO. I was shattered and went to sleep with a heavy heart and thought of alternate ways.
Next morning was 14th February and what do we see on the news? - JUSTIN BEIBER IS COMING TO MUMBAI , INDIA ON 10TH MAY 2017 !!! I was screaming from inside!! 😀😀How GOOD AND GREAT IS OUR GOD!! No wonder I couldn't book the tickets to his Concert in Bern!! This was nothing short of a very Big miracle! Seeing me so excited Vin was curious, and so I told him the story. He was amazed too!

So next week we booked the tickets for JB's Mumbai Concert and since Vin said that he wouldn't go if his cousins didn't, I ended up booking for 4 kids and 2 adults !! We bought JB Tshirts, we made hand written messages on large chart papers, the 2 younger kids even auditioned for the online dance competition JB has for dancing with winners on stage!! I ended up following JB everywhere on the social medias so we didn't miss anything or any chance to maybe end up meeting him!! LOL! I even wrote to 'Make a wish India' in case they could help Vineet meet JB. But all our efforts were in vain (as we later realised). But back then, we were ALL Beleibers!! LOL! We knew everything about JB. Of course its a different thing that Vinsy already knew some... After all, wasn't JB's  "BABY' song the first he played on his Octapad? 😇😊😊

Click HERE to watch Vineet's 'Baby' song by Justin Beiber on the Octapad

Few Funny SB things!!!

Hello Everyone!! This being my first post for the new year, Wish you All A Very Happy New Year!!
So I had started drafting this post some time back, then got busy with Christmas n the New Year until now.And to my disappointment, I was unable to find links to research materials, etc for some of my points herein.. :( So here's requesting to those who can help me with links to the related study materials, Please Please do comment in the Comments Section. So here they go -

I wish someone had told me earlier....which is why I want to tell new parents with SB kids...
There are a few things I have discovered over the years, which are similar among most SB kids. I discovered them by posts from other parents of SB kids/adults with SB in various Spina bifida support groups on Facebook. These groups are amazing and I will share their links at the end of this post.All are administered and are very safe places...

So. I shall put up a small list of 'funny things' (issues?) associated with spina bifida.

1. Noddy! -

Since childhood, Vineet has been nodding his head up-down while watching T.V., or maybe sometimes just like that. And I still tease him calling him 'Noddy' :) His dadi  (grandmother) made a point when she once explained that maybe because his head was so heavy, it eased the tension on the neck by nodding. I agreed. Then once when I was going through one of the groups, I came to know that its a common sight to see SB kids and adults nodding their heads so, and this was observed in one of the numerous 'Spina bifida Conferences" held in the U.S.
And I thought to myself - Wow, thats cute... :)

2. Picking at hands and fingers -

When Vinsy was in my tummy, I used to hear a thudding sound whenever I was hungry, and although I knew his legs weren't moving, I sometimes hoped and wished he was kicking when hungry.Then out he came and I realised that he was striking his hands against each other.Sometimes so vehemently that his tiny nails would make scratch marks on his tiny hands.So we made tiny mittens for his hands :) Now as the years went by, the scratching continued as vehemently,to the point that he kept picking at the scabs that were formed too! It would stop only during the winters when he would be wearing full sleeved clothes. Even then he would be picking at the nail base to the point when you could see raw flesh! Nothing stopped him and no amount of scolding helped.
Then again, I discovered in the group posts that it was another common 'funny thing' with SB. Nowadays I apply tape over his fingers that he had picked badly until it got well, threatening to put it back as soon as I saw any peeling!
And it still goes on... :/

3. Sudden Loud Noise -

This one should actually be the first point coz its familiar and common to all SB kids or adults - The unbearable sudden, loud sound of a cracker. It's actually kind of funny coz Vineet can sit through a Rock concert, but one cracker bursting nearby,or the sudden occasional thunder and lightening, can put him in hyper-scared mode for the rest of the day (or night for that matter ). So when he was a kid he would be crying throughout the night when the Indian  festival called "Mahalaya " was being celebrated-people  burst crackers throughout the night . I would be awake with him too, making sure no one burst  one near our house. But even a far off one with a loud noise would keep him awake.
Until we thought of earphones . Now as I write , I fail to recollect why we took so long to put earphones for him !! :/
So as I chanced upon an as article on the Internet about why this was a common topic of discussion in most groups especially with young parents of an SB kid, in short it has something to do with the VP shunt passing behind the ears . I think I should put a link to the article here at this point for those who would like to know more about this .

4. Gagging -

 Most kids and adults with spina bifida have an associated condition called Arnold Chiari malformation Type I or II . Due to this, even as babies, persons with spina bifida have difficulty in swallowing food (gagging) .Again , as spina bifida is a "snow flake" condition , meaning each one affected has different conditions , not everyone may have this problem . Vineet has. Unfortunately or maybe fortunately, as his unvarying food intake makes for regular stool formation and accidents are almost nil. Praise God!
And so for those who are curious to know how this condition affects eating and/or swallowing , here is the link  - http://www.mayoclinic.org/diseases-conditions/chiari-malformation/home/ovc-20249651

5. Dental Problems -

So I just found out that dental deformities in spina bifida (as well as kids with other neuro defects) kids are termed - 'DENTAL CARIES ' by the Medical fraternity. Vineet does have some amount of defect but it is mainly the front tooth which has been displaced by him during growing up years, nothing other than that. If you are interested in a clinical finding, I found a link- http://www.scielo.br/pdf/bdj/v20n5/v20n5a14.pdf

6. Sleep Apnea -

Man, I didn't know this too was associated with spina bifida. With Vineet, it has improved a lot now, but when he was younger and I was beside him while he slept, there were times when his breathing would just stop.I would wait... and wait...thinking what the heck was happening. And finally after a minute or so he would take a long deep breath, much to my relief!! Then I came across the term 'sleep apnea' being used for it in one of our SB groups.This can be caused by conditions like scoliosis , structural defects , or even the weakness of the abdominal or chest wall muscles. 
Here is a great link to some more of these issues - http://www.spinabifida.net/15-health-care-issues-for-adults-living-with-spina-bifida.html


So as I said at the beginning of my post, here are the links to a few of the Awesome Spina bifida groups on Facebook. They are very supportive of all my queries and very informative.

https://www.facebook.com/groups/UbSBGroup/
https://www.facebook.com/groups/28352543484/
https://www.facebook.com/groups/291783857503880/
https://www.facebook.com/groups/RollingWithSpinaBifida/
https://www.facebook.com/groups/spinabifidaassociationofindia/

Until next time, bye All, Thankyou for going through Vineet's Journey! God Bless you All!