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!

CONGRATULATIONS TO VINEET AND ALL OF US !!!

Vin's exams went on for a month and he was allowed to sit in a seperate room with his writer and an Invigilator from different schools.Most of the papers were good and easy and if I had to give those exams a second time ,I would have done a better job than I did some twentyfive years back!! LOL!

VINEET WITH HIS DADI AND HIS WRITER ON THE LAST DAY OF EXAMS

So days passed by and finally the last day of the exams came. It was also the last day the boys would meet each other . I had some momentos for these precious classmates of Vin and we took lots of fotos for the memories....

So on 15th May 2016, Friday, the much awaited Class 10 Board Results were published. Vineet and us were a nervous wreck since morning and so was his writer for the exams! So Vineet passed in the First Division with an average of 68 percent in a total of 10 papers!! YAY!!!

(A small note- his marks in the 'Arts' papers were better than the 'Science' ones.So he's an Arts student.)

But since the Arts stream was in a school located far from home, Vineet is currently studying in the Commerce stream which he abhors :/ Lets see where he's headed...

 Here's a link to my Fb post on his results -
https://www.facebook.com/photo.php?fbid=10209569446097751&set=a.1885774228829.110337.1375597855&type=3&theater

Vineet, Math and Academics

This is an important post which I had started drafting some time back. But I have to respect Vineet's wishes and not relate this topic entirely to his situation. So this is going to be a general topic mostly and I hope it helps you who are having similar situations, especially people in Eastern India.

So, as the story goes, Vineet was doing mediocre in his mainstream  school until middle school. Only when he went to high school did we realise that his handwriting had turned illegible and he was also having problems with arithmetic part of mathematics. I now understand that both are problems related to spina bifida. I was supposed to take him to "Manovikas Kendra "  in Kolkata for his evaluation, but unfortunately we couldn't do it for time constraints  (which is a bad excuse I guess...) :/

Fast forward to today. Vineet is going to appear for his class 10 board exams from Monday, and he has gotten himself a writer. Math is still a problem but he is concentrating on the algebra and has worked hard on arithmetic too. Geometry is still a problem though...

So here's a small request for you dear friends, kindly keep Vineet in your prayers as he goes for his board exams from Monday. It will go on for a month till 28th March. Please pray that he may get back his self confidence with the results later this year....

Thankyou so much!

Vineet needs a new mattress. But it can't be the 'normal' one.

For years now, Vineet has been using the normal mattress that we all mostly use - the coir one with thin foam lining. Maybe there are springs inside as well, I don't know. In India its the number one brand by the name- 'Kurl-on''. We have known this brand since our childhood and we know no other.

Vineet has a very severe type of scoliosis associated with his condition and I am told that it might be called ''LORDOSIS". I don't know whether surgery will be beneficial for him, and frankly, I dread it. Coz the Orthopaedic doctor at 'Christian Medical College and Hospital, Vellore' had told us that he could put in rods, but rehab would take around 6 months or so. Now Vin and me can't stick around at any hospital for a period of more than 7 days, 6 months??!!! NO NO NO!! is what we both said :P So we left it at that. Vineet has been very gracious enough to allow me to put up the fotos of his back at an earlier age in this blog. He said its okay since its supposed to help parents of other similar kids :) Isn't he an Angel :)

Top viewof his SB site
 at age 5

Side view at age 5

   

Now at 15 years of age , Vin suddenly lost all his baby fat and with all the changes of the body at 15 years old, suddenly I find his bone deformity at the SB site has risen up like a mountain! Its uncomfortable to the eyes and though Vin does not have much probs with it considering he uses his back as a support, I know what it means. It means all his organs inside are crushed including the lungs - which is Dangerous as his Uncle Dr. Nitesh says. Any kind of surgery or therapy correction, etc can now happen only after his Class 10 Board Exams next year in February-March. So as of now, I try not to make him sit at his wheelchair for long hours at a stretch at home. Can't help much at school though....but there's a rest cushion for his back. Its always been there....

So now Vin complains of a backache at times and we do a massage. But he's also tired of sleeping on his sides all the time and now wants to sleep on his back. So started our search on the internet for the most suitable mattress for his condition. First I asked in my various spina bifida groups on Facebook. I received a variety of answers but the most prominent of them was the usage of air mattresses by most respondants.Some were also using water-beds and normal foam mattresses. But I had seen 2 friends and family using air-mattresses and thought they worked fine. So I just walked into a pharmacy and got one - it was cheap so to say, Rupees Two Thousand for the brand Karma. I chose Karma because they had a free replacement policy-no questions asked.

Although Vinsy found the bed very comfortable, it didn't serve our purpose. Even after pumping air to its full volume, it was not high enough to fit-in his bony deformity. Now I had to search online. I searched a lot but couldn't get a satisfactory answer. All I could make out was that you didn't need to have a stiff mattress for backaches anymore. It was completely a wrong notion. Neither are you supposed to use a very soft one. Below are a few sites I stumbled upon searching for the right kind of mattress -
http://myergobed.com/best-mattress-for-scoliosis.php

https://www.novosbed.com/mattrepedia/how-to-find-the-best-mattress-for-scoliosis/

http://www.ebay.com/gds/Which-Mattress-Is-Best-for-Back-Pain-/10000000177628320/g.html

http://www.spine-health.com/wellness/sleep/selecting-best-mattress

https://www.resurgensspine.com/education/resources/frequently-asked-questions-faqs/78

http://www.spine-health.com/wellness/sleep/mattresses-back-conditions

So I deduced and gathered after all the searches of various kinds that there is this mattress called "My Ergo Bed' which they claim is very good for scoliosis. Then there's this 'Memory Foam Mattress' which is the best type that has been developed by NASA scientists. I think this post will be way too long to say more about it, so I am posting a link about it.
http://www.bedinabox.com/history-of-memory-foam-mattresses.php


Now just like you, I too was getting confused between the My Ergo Bed and the Memory Foam Mattress.But blogs and forums like these helped me make a decision -

http://scoliosisnutty.blogspot.in/2007/12/scoliosis-and-memory-foam-mattresses.html
http://scoliosisscoliosisscoliosis.blogspot.in/2010/10/best-mattress-for-those-with-scoliosis.html
http://www.scoliosis.org/forum/showthread.php?1027-Get-a-new-bed

(This is why I blog- we help each other :)

Secondly, I doubt if 'My Ergo Bed' was delivering to India coz it had to be custom made.
Third was the price factor. I found that it was exorbitantly priced.

And then as usual, my dear God helped me :) One day as I was returning home from work, there was a billboard near Vin's school saying - The number One International mattress company was here! In Asansol! A small town in West bengal India! - ECLIPSE. I googled at home and sure enough, they had the Visco Memory foam Mattress! Below is the link to their official website -
http://www.eclipsemattress.in/mattressingredients.html

When we went to visit the store, we had no idea that the memory foam mattresses were so expensive! There were so many varieties, for a moment we got puzzled. Then we tried on a few samples and decided on this one- The 'Ortho Visco' memory foam mattress. We were told it would cost us around Rupees Thirtyfour Thousand for the size of Vin's bed! okay.....hmmm....okay.....so we'll take it. Maybe we 'll  have less pizzas ;) .Papa can sleep next to Vin on it as he's got a slight back prob as well ...
I wished they had a trial period as well....

So the order has been given and we should receive it within a few days. Do please check in the Comments section for my reviews on the mattress when it will have arrived, as also after using it for a month or so.
Wow, this post got lengthier than I thought! Thankyou All for going through and sharing our journey with Vineet - our very special child :)


(P. S.  Please leave your valued comments and suggestions in the comments section, I love going through them  :)

Standing Power Wheelchair

In seated Position

In standing Position

A standing wheelchair is the dream of most paraplegics I could say. And ever since I showed it to Vineet on youtube he had been eager to experience it. For him , as he said, it would be the first time he would stand on his own.

In my post about his power wheelchair I had mentioned that our Surgico-pharma shop had conveyed that the standing power wheelchair would be available for demo soon. So on 11th July 2015 , we visited the shop and indeed, there it was! We were as excited as Vineet to try it. Maybe a little apprehensive too, thinking what if the knee support wasn't strong enough to hold him? Or what if the knee support was too tight on him and he wouldn't know if the pressure was crushing him? Nevertheless, Vineet sat on the wheelchair and slowly he began to rise up from his seating position. And then it struck us all - The huge bony deformity of his 'Lordosis" wouldn't let him rest on his back on the back seat. So as much as my brave Vin tried, he kept falling in front. Daddy was very worried about the knees too....And our demo personnel decided that the model being an adult size did not help much either. So after taking a foto of Vin in it (which he wanted to put up on his FB page :) , we switched it back to the sitting position.

 Our dealer has assured us that he will be on the lookout for a 'Paediatric ' model for Vin. So we came back home a little  disheartened, but our motto in life being - "NEVER SAY DIE", we will still be looking into it. ...... Maybe we'll get ourselves a neat Paediatric model into which I shall get a cutout for the back part and get an elastic cover with a cushion. ..... Or maybe they'll make a model where you can rest forward and not backwards........ The options are endless and our hopes and dreams will lead us to them..... :)

Here is the link to the official video of the product from Ottobock - Its beautiful!
https://youtu.be/uGwHwPx3qsI



THANKS TO ALL WHO ARE GOING THROUGH OUR JOURNEY WITH VINEET !
God bless you! 

Vineet is Prefect in School !!!! YAY!!

I was pleasantly surprised and a bit unbelieving when Vineet told me he was going to be Prefect; as soon as he started his Class 10 classes.But then his brothers told me it was true! He was selected to be "Extra-Curricular" Captain of the School.Then came the Invitation to attend his Investiture Ceremony on 14th May 2015. We as parents were overwhelmed.
            Gratitude and Thankfulness are small words to describe our feelings for Vineet's school and all the teachers in here. They have been the wind beneath Vineet's wings ever since he joined in Kindergarten. Yes, it was an advantage at that point that his dad was one of the teachers, but we were sometimes apprehensive whether he being specially-challenged would be admitted. All we knew at that time, some 15 years ago was that children in wheelchairs don't attend normal school. They have special schools.Here in India there is no difference in treatment of an 'Orthopaedically challenged' person and a "mentally-challenged' person. So a deaf and dumb child goes to a Special school alongwith an Autistic child and a child with Cerebral Palsy. I wonder if Vineet's dad would not have been a teacher in this school whether he would have been admitted. But yes, these apprehensions of parents of other special kids have been taken care of now by our government. ALL kids irrespective of their challenges- physical or mental, have to be taken in by mainstream schools.

To read more on INCLUSIVE Education by UNICEF click here

It is heartening to see ramps all over the 2 Christian Brothers Schools here in our small town of Asansol. Vineet's struggles have paved the way for many more specially-challenged children in school who are younger to him and his story is inspiring to so many parents. So, THANKYOU ALL you loving and caring teachers, students, supervisors and of course, Mr N. D'souza, Vineet's beloved Principal. He never misses a chance to help Vineet fly....

           So below is the link to some of his fotos of the Investiture Ceremony. As you all can make out, he's very serious about his post ;)

Click here to see fotos of Vineet's Investiture Ceremony

Click here to see a video of Vineet taking oath