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 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

Vineet's First Power Wheelchair!!!

WHEELCHAIR  NUMBER  8

I had my eyes on the Power wheelchair for Vin long enough now and was under the impression that it would cost us the moon. So I told myself to wait for some more time till Vin really needed it. And one fine day when I was going through some local companies for it, I stumbled upon the official site of 'KARMA' wheelchairs in India and was pleasantly surprised to find a decent model that cost only Rupees Ninety Thousand!( Fourteen hundred dollars approx). It was even amazing that there was a dealer right in our small town!! We spoke to them for a demo which they readily agreed for and we took Vin to the shop. He was just as excited as we were coz he was getting a little tired of 'being pushed around'!! hahaha! And he's too lazy to push himself except when he's on his fav wheelchair at home.

We came back home and pretended to Vin that we would not be buying it - it was way too expensive! :P We planned to surprise him on Valentine's Day which was just after a few days and he's 'Our Valentine' of course :) So on Valentine's Day 2015 we surprised him in the evening with his new Power chair and he was overjoyed! I took some snaps and few videos too, but by mistake they got deleted from my phone :( A few that got saved which I uploaded to FB are here in the links - Have a look and BE HAPPY!!!! Share our small and big joys! Thankyou!

The link to a small video on the first day! --

Click here to see a small video of Vineet in his new power wheelchair

Vineet scalded his feet. Yet again for the second time ( Puri ,March 2015)

I can't believe its been more than a year since my last post last year. Well its not that nothing related to Vineet has not happened, maybe it was just procrastination on my part. So let me go back and shake up my 'getting-old-brains' and give you all an update. So as far as I can remember , the Most important thing that happened these past few months is that Vineet burnt/scalded his feet. Again. This time not below, but above. I mean the last time it was when he accidently rode on a bike with an Uncle with his feet up on the 'silencer'. It was only the next morning when I saw his right foot with 2 big blisters underneath that we rushed him to the medics. So as the story goes, this time we were travelling in a different city and the roads were very crowded due to construction work going on, and a biker (again) wouldn't let Vineet's wheelchair cross the road. Daddy picked up a verbal fight with him and while that was happening, another biker onlooker stuck his bike silencer (again) very close to Vineet's foot(right one again) and scalded him unknowingly. We noticed it only after crossing the road. Vineet was about to go to the beach but instead we ran for medicines. After a preliminary treatment, he sat at the edge of the waters as his sister and cousins enjoyed... It was a sad day for him as well as for us....

You cannot expect a mommy to see her son like that. So I decided, What the heck. Let him go and have fun on the beach. We've seen worse days and worse wounds.  They ALWAYS heal.... :) At first Vin didn't want to go and after a lot of persuasion that I would take care of the burn, he agreed. And look at all the fun he had that day!!!

Mommy and papa were super happy and Vin was over the moon!!! What more can we ask for...... :)

Okay, so now about the wound. Yes the blister had punctured and now it was a wound. After coming back to the hotel room, I got all those medicines and paraffin gauzes, etc that I had used last time. I spent 3-4 days doing the same dressing. But when we returned back home, we had to see a doctor. He changed the ointment and gave some antibiotics as well. Naturally. I kept doing the dressing and finally the wound closed.

Those were some real trying days...Its perfectly alright now, Praise God! Thankyou  All for going through our 'Journey with Vineet' :)

Vineet's 'Confirmation' on 19th January 2014

'Confirmation' is a Christian religious ritual in which a boy or girl renews his/her Christian faith in a more mature way. Which is why it is imparted to them when they are in their teens. Now this post may be a little bit emotional (as it was for me), but please bear with me... :)


So as the story goes, the children who were to receive Confirmation this year had to attend their Catechism classes since last year. Now Vineet was given the special option of staying at home and learning some notes. Which was fine, until in the last month, i.e. December, we got to know of a Test for it just before the week of the Confirmation. Vin studied for it and when he went for the test, he was told that it was difficult for him to receive Confirmation without having attended any classes. I was stupefied when I heard of this from my husband, having become extremely angry (and quite the Mother Bear as I become at times for Vinsy ) and was ready to fight on this. However, Vin's dad said that he would be attending Special classes for a week and then the Final decision would be taken. I gulped down my anger and frustration and offered everything to God - in full confidence that He had never let my Vinsy down till now ever....


After 3 or 4 days, Vin was called for the Ceremony's practice sessions to Church and it was then that we realized that he was in. I went with Vin the first day and saw his Catholic friends - some from school as well. They ALL are very fond of Vin, and that was the First time it struck me - Vin's friends were so tall, they looked so good, they were already looking like teenagers with facial hair, deep voice....and there was my Vin among them....still looking like a small kid in a wheelchair. My eyes welled up. Some of them even had girlfriends. Ah yes, there were girls in there too- all his age or maybe a year older and they looked big too. And I noticed...that none of the girls noticed Vin. And as I type this, I hope to God that maybe I am wrong....Maybe he was noticed, but in a different way...


And so finally on 19th January 2014, my Vinsy received his Fourth Holy Sacrament - The Confirmation. As luck would have it, we couldn't get a foto when he was being given it from the Holy Bishop. I am putting up a foto of the group that was clicked right at the end and am ending this post with a heavy heart and a prayer that whoever reads this may put up a silent prayer for Vin that God may always be by his side ever... Amen.

FINALLY ! The search is over - New wheelchair for Vineet

KARMA- AURORA 3 +

WHEELCHAIR NUMBER 7

So we had long decided that when we would be visiting Kolkata for my Godson's First Holy Communion on the 17th of November , we would allot one day to search for Vin's new wheelchair. So on the morning of 16th, we left for the place in Kolkata renowned for All types of  Mobility stuff- Chittaranjan Avenue. I was looking out for Model 938 by Vissco as Vin had tried it out in a hospital and suited him and us well. Then a store showed us this- Karma(number one brand in India as of now). It had swing-away handrests, removable leg rests, removable big wheels, foldable, etc. But the Best Part was - Vin's legs fitted on to the rests PERFECTLY.

 His papa was happy it could be made so small as to fit inside the car's boot comfortably. But in the first store, the left leg rest was not swinging back into position with a click as the right one. So they made us wait for over an hour saying they would get another piece for us. Only there was no other piece with them. So Vin's dad walked down the lane and found the same model in another shop and a few hundred cheaper. It took us 5 minutes to check that one out and load it into our car :). Vin looks very comfy in it, and I am happy for the legs :)

VINEET THE ROCKSTAR!!!! [SPECTRUM 2013]

28th September 2013. Saturday. 12 noon approx.
Vineet performed on his Octapad for the first time in front of approximately 200 or more people (mostly participants, teachers , parents, guests from the 5 Topmost schools of Asansol). The venue was his own school - St. Patrick's Higher Secondary School's Auditorium.

So as the story goes, Vin was supposed to take part in his Annual Talent show in school in August. I had in mind Justin Beiber's 'Baby' song for it and by pure chance, even got a video song of it where Justin sang the song only with a guitarist. It was the Best option and Vin started practising for it with the help of his Octapad Teacher (who's very kind enough to give him his classes at home once every week). At first Vin was a bit reluctant- he said there was not much time. Then we got news that the Talent show was only for kids upto Class 7. Then came the Half-yearly exams and we forgot all about it. Then after exams we came to know that the Annual Inter-school Fest of St. Patrick's School - ''SPECTRUM 2013'' was going to be held and Vin would perform the very same song. Vin was a bit nervous again, but his Sir gave him confidence that he would practice with him and it would be just fine. So they practised some more for 2-3 days and then his Sir had to leave for somewhere Outstation for an emergency, then our player (was supposed to be) conked out, and I was all worked up.I made Vin practise the last part with a 'roll-over' with the computer's help, but Vin would get worked up. I thought he wouldn't be able to perform. Then , as I believe , 'God Helps those who help themselves', things started falling in place. The night before the Programme it suddenly struck me that I had 'cut' the video from the point where Justin is playing the fool and laughing with his guitarist , at Vin's behest and had saved it in a format which my player was unable to read. And at 11.30 p.m. I tried out the original piece without cuts and it played perfectly well. So my player was perfectly alright. I beamed 'coz Vin's Sir would be coming early morning to help him practise last minute before he went on stage. By now Vin was already playing like a pro and I left for my work with a lighter heart :)

When Vin's part came, I gave the 'cut' CD to the person in charge of the music and during our short conversation , I think I confused the poor fellow. He stopped the CD seconds before it ended. So Vin could not do the roll-over. But inspite of it, the performance was great and everyone cheered for him. He even got a 'Participant' token! :)

He was Vineet, the Rockstar that day!!!

Click here to see the video of Vin's performance

Urinary Tract Infection after 6 years....

The last time Vin had a Urinary Tract Infection was way back in 2007, when his ureters had developed a false passage and CIC was becoming increasingly difficult. And then one night I punctured something and blood started coming out in the urine to my Horror!! We then rushed first to Kolkata for the tests and then to 'Christian Medical College Hospital, Vellore'. It was there that we were introduced to overnight draining, etc.
          I don't know whether this infection was related to the seasonal flu that Vineet had just had the week before. He was on antibiotics for it and hence loose motion due to them. And then the fever came back. It couldn't be anything else, so we did the Urine culture and there it was.... a UTI. Well, he got antibiotics again, they are over now, and his fever is gone too (Praise God), but UTIs do something worse- weaken him. He's still recovering though he looks better. So our strategy of thinking that 'we need not do a CIC during the day because he has overnight draining' is not going to work perhaps. And of course there is always a Bigger problem - Vineet does not drink adequate water. Especially in school. It leads to his urine being stagnant for longer periods in his urinary bladder and hence the more chances of infection. I'm supposed to give him Cranberry juice which works well for bladder - flushing, but its not regular in supply here in India. I might have to try the online shops now. So thats all for now folks...thought I'd pass on the details...
                       The latest is, Vineet is preparing for his Talent show this year to be held soon and this time he plans to play the Octapad for Justin Beiber's 'Baby' vocals :) Will let you know how it was....till then..