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..

 

VINEET GOES TO SEE THE TAJ MAHAL !! DAY 1

It happened so soon, I am still amazed its over - Vineet's trip to Agra to see the Taj Mahal!

 



So apparently a year or two back, Vin told his dad he wanted to see the Taj Mahal. I don't exactly recollect why he specifically wanted to see it and not another. So his papa said there will be a school term break in March and we can all go then. Then we forgot all about it. In January this year, Vin was chatting with his grandma who had just returned from her holiday to my younger BIL's home in Abu Dhabi. And he repeated about the Agra trip. That was how we were reminded of it and immediately we did the bookings. Time flew and on 22nd March, we boarded the overnight train to New Delhi (Agra city is just another 200 kms from Delhi).
                    No sooner did we reach New Delhi railway station, when we searched for a ramp, we were told by the coolies there-' The ramp is way off- around one kilometre away. Save time and hire two of us and you'll be out in no time.'Seemed okay to us and we hired two coolies and even then we had Vin being carried by his papa. Papa was very exhausted by the time we climbed a flight of stairs, then walked quite some distance and then another flight of stairs to go down. And all this while I kept thinking to myself- This is my country's capital city and look at its state - ramps have been made miles away!! Our Asansol city railway station is so much easily accessible. Nevertheless...This story is to be carried forward. So please read the end part about New Delhi Railway Station again...

VINEET IN FRONT OF INDIA GATE, NEW DELHI, INDIA

So the first day we planned to around the nearby areas such as 'Rashtrapati Bhawan'(the President's residence) and the 'INDIA GATE". It was a beautiful evening and there was cool breeze all around. Vin took lots of snaps with his camera and saw the R B through locked gates. Many other tourists were also there. Then we took a walk towards India Gate situated nearby. We passed beautiful gardens and the Parliament House as well on the way. But Alas! when we reached India Gate no one was allowed to go up to it, 'coz there had been a haul of bombs by terrorists the day before. So we had to satisfy ourselves by taking snaps from a distance. It was a beautiful place- the parks in front of it- there were families sitting and chatting, small babies in strollers, young couples and plenty of snack-vendors. It was a very homely sight :)

 

MIRACLES Part 3

Vineet was in Class 1, so he must have been 6 and a 1/2 years old in April 2006. He wasn't being cathed until then, and he suddenly got a UTI ( he hates to drink water and the hot summer was too hot). Like all previous instances , we took him to the Doctor who put him on Antibiotics - Only, this time they wouldn't work. Vineet finished 2 courses, but they did not work. Everyday he had high fever and he was reduced to bones within a month. Finally we had no other option except to take him to Kolkata's CMRI Hospital and there he was diagonised with ' HYDRO-NEPHROSIS"- water in the kidneys. The kidneys had been affected very badly and the Doctors out there painted a very grim and dismal picture of Vin. We thought we were going to lose him. There they started another round of Antibiotics- this time he was being injected, and it was just too painful, not just for him , but for us as well...

 7 days passed and we saw no improvement or response, so we decided to go to some other Nephrologist and show Vineet. We got a good Surgeon who admitted Vineet again and this time it was more needles. It was a dismal place (as are all hospitals) and Vin and me became mentally weak. We would hold onto each other and cry.Sometimes I would pray.... And then after 9 or 10 days the Surgeon announced- Since the pus, etc in the kidneys is not being drained out even after putting in a Foley-catheter, they would have to make an incision in his lower belly and wash it out for good. It sounded okay, only when I consulted my dear brother over this, he said- 'Just pack your bags and leave!!' I really don't know what we thought or did, but we told the Surgeon that Vin was mentally affected and that we needed some more time to come back and do it. So we would come back later.
We really packed our bags and left the hospital the following day.

As we were leaving, I silently prayed to my God- ''Please God, I don't want Vin to come back to this place ever. Please have mercy on him, and on us.....''

The very next morning, Vin's fever of more than two months or so, was GONE!!!! Praise be to God Almighty!!! He simply loves my (His) Vin! :)

 

MIRACLES Part 2

I remember that Vineet must have been 4 or 5 years old (he was in Prep School then), and I returned home from work one day in the evening, and as I checked him all over, I saw a round, small , gaping wound on his SB site - the highest spot  on the backbone deformity. That was the first time he got a bruise there and I was in a fix. I tried various ointments, creams, lotions, medicines to make it heal fast - nothing would work. Then came the most horrifying part - he got tiny rashes all over his body and went beserk scratching them! His stools turned green and watery!! And they wouldn't stop too!!The Doctor gave him medicines, antibiotic, lotions - only they wouldn't work. I was at my wits' end and cried desperately seeing Vin suffer so.... Then there was a 2 day Retreat held in Vin's School by a Paster (forgot his name). I went with my Mother-in-law and took Vin along. On the second day, when the Pastor called out to bless the sick, I went to him with Vin. He blessed us both and I really made a good retreat. We came back home and I found that Vin's sore was bleeding again. I did the dressing as usual, and as I did so, I silently prayed to God and pleaded Him to take away Vin's rashes. I told him- ''From tomorrow morning onwards, I am NOT going to check for his rashes. You will have to take them away, and I won't listen to anything more. I will believe that you have taken them away. And You have to listen to me.''

Dear People, Believe it or not, I didn't look at Vin's rashes the whole of the following day, and on the day after next, Believe me - THE RASHES WERE GONE !!! SO WAS THE GREEN STOOL !!

After a few days, Vin's back sore also healed. I remember that it healed really fast....:)

MIRACLES Part 1

I have always wondered about the presence of miracles in Vineet's life. I mean I've always wondered about the fact that they have ALWAYS been there in his life. Some small and some, not so small....some believable and some Unbelievable!! which is why I chose to blog about them....

So, as far as I can take my (albeit poor) memory back, I remember the First Big One-

HEALING OF VIN'S HYDROCEPHALOUS (2002?)

We had gone to the 'Divine Retreat Centre' in Kerala upon insistence of friends and family coz they had been there and had brought along with them a CD with the numerous miracles that had been taking place there, and among them, a baby girl from Goa who had Spina bifida , and had been completely cured! Our entire family had watched the video with amazement and more belief than us, that Vin too could be healed there.We were told to 'Keep the faith', and off we went.

Kerala was a beautiful place and the 'Divine Retreat Centre" was a very big place. From the very first day I experienced 'Para-normal' things, things which I can speak of here, but it would make the blog very long. So to cut the story short, I have to admit that I didn't make so good a retreat as I would have loved to...I was very distracted , and when the last day arrived and Vin was not healed, I burst into tears. The friends I made there consoled me and said- Keep the faith, sometimes you have to come here again and again to be healed'.

So we came back home. A week or so later, Vin was sitting on the floor and playing and we were higher up beside him- on the bed. Suddenly Vin's dad said- "look, the place on his forehead where there used to be a bulge due to Hydrocephalous, has sunken in and instead there's a dimple!' I looked and sure enough, suddenly the bulge was gone!! We praised God for his mercy on our baby and Believed that He had healed the Hydrocephalous and for good- I told Him- Never again am I going to test Vin for Hydrocephalous- I will keep my faith and You keep yours :) Touchwood, till date Vin has never ever had any Hydrocephalous issues anymore. And its going to be that way for the rest of his life, Amen!!

Another SB Story near our home - Saideep Singh

It was 16th December 2012 and I was returning home after the Sunday evening mass with my Sister-in-law. I urged her to take me to the house of her aquaintance who had had a baby with Spina bifida, and who resided in our neighbourhood. She readily agreed. It was just a 3 minute walk from our church. When I saw the mother, I immediately recognized her- we often crossed paths when I went to Vineet's school for his CIC. And she would always give me a beautiful smile.She herself was very smart and good-looking, but at that time she looked miles away from how I had seen her... And then I saw the baby- head gone big due to Hydrocephalous , legs deformed, and then I froze! - The Mylomeningocele on his back had Still Not been operated upon and he was going to be 2 years old in April 2013! I was speechless for a moment or two and then I asked what his name was . 'Saideep' came the answer. I asked how could he be in that state for so long? (And I was begining to get sick in my mind). So the mother answered - We took him to various hospitals and they refused to take him in, and those who did,asked for Rupees Five lakhs and Seven lakhs for the entire Package, and we don't have all that money. I couldn't believe my ears. Its true the repair costs a good deal, but after13 years also it shouldn't go so high that babies must be left to die...But this fellow? this fellow wants to live- he's been putting up with all those sufferings all this time...I don't remember what else I spoke, but I promised the mother that I would do everything that was within my reach. I asked permission to take Saideep's fotos and use them for online donations. I seriously didn't know where I was heading - I just knew I couldn't let a baby suffer thus...

SAIDEEP SINGH on 16th December 2012 before his surgery

I came back home and showed my family members his fotos on my mobile and unable to bear the pain, I burst into tears.Seeing me so, Vineet too started crying.I was unable to sleep that night and kept thinking what to do..what to do...I messaged a few friends and relatives about going online with his case for donations.There was a second line of action which was more important- the medical route. I researched about that one too, rang up doctors and friends. One friend said- Put up his page and leave the rest to God. I sat up late in the night on 17th and floated Saideep's page on Facebook. I urged and invited people to start liking and sharing the page so it would reach out to those who could actually help. 24 hours passed by and the Page had only 18 'Likes'. I was angry so to say- I had around 175 friends and all they had to do was 'Like" the page, and spread the word, and the right people would come along. Then I realised, this is reality- Everyone was not supposed to think the way I thought, or wanted them to think my way. This is our world and each one thinks differently. I was a little disappointed, but kept at it. On the other hand, one of my very good friends, managed to procure the phone number of the Neurosurgeon who had operated upon Vineet 13 years back in Kolkata. I was nervous about ringing him up directly, but I had to do it. The phone rang but no one answered. I thought maybe God is telling me, This is not the day, and left it at that. Then I went asked Saideep's mum for his previous Medical papers and she immediately brought them to my house. She brought along Saideep so Vineet could have a look at him. She seemed to be carrying him around well.

So the papers said that he had been diagonised with 'Chiari Malformation Type II' as well. There was also an MRI done. But all they did was do tests and refer to another hospital. At least they could have shunted him so his head would not have increased so much in size..but no...What has the world come to.... So I rang up Vineet's Neurosurgeon again the next day and finally got to speak to him. He said he was still doing meningocele repair. He told me to ring up the Hospital for the expenses involved. So then I rang up the Hospital and they said it would be around Rupees Two to Three lakhs. I was a little depressed- we would never be able to collect that much money. Then Vin's dad rang up one of his Doctor friends and narrated the story and asked for some other Hospital where we could have this Special surgery. He suggested- 'Institute of Neurosciences, Kolkata". We looked it up on the net and found reasonably pleased with the site. So we decided we would first go to IN-K, check it out, and if it didn't work, we could always go to CMRI (Calcutta Medical Research Institute).

Christmas was at hand, and although I was dying to take Saideep to Hospital soon, Vin's dad made me understand that it would be better if we went after Christmas- everyone would be free and the holidays would make it easy. I agreed. Only, on 20th December, Saideep's mum rang me up and told me that his Mylomeningocele tumor on his back had started leaking!! She asked me if we could take him to a Doctor in Kolkata. I was in shock! I didn't know what to do. I spent the entire afetrnoon sitting on the stairs leading to the terrace not knowing what to do. I made up my mind that if I had to spend the money I had been saving for my kids, so be it. God will definitely help me find a way, of this I was confident. God bless my dear husband who was with me all the way- he helped me in his own silent ways...The ways looked so grim and hazy...

And then on 24th morning my dear friend Linny called from US. She had already promised me help for Saideep, but the amount she collected from her community there was unbelievable!! Oh I was so full of joy and thankfulness to her and to All those who had so generously donated for Saideep. And of course, to my God...Now I was confident that with that money, my money , and with some money coming into Saideep's bank account(which I opened immediately so my friends could do money transfer) as well as cash, we could get him admitted to any Hospital in Kolkata. And then on 24th evening, Vin's dad slipped and twisted his ankle on the stairs. So we had to wait some more. Finally on 28th December, me,Vin's dad, Saideep and his parents left for Kolkata. We first went to Institute of Neurosciences, Kolkata, and we were very impressed with this Speciality Hospital regarding Neuro cases. We met the Neurosurgeon in-charge, narrated Saideep's entire history and emphasised that we wanted surgery as soon as possible. There was another MRI done and the surgery was scheduled for 4th January 2013. Saideep's dad is an educated man and handled the Hospital errands very well. Maybe he was also used to them by now.So me and Vin's dad returned late at night that very day, while Saideep and his parents stayed back at a relative's place in Kolkata.

On 4th January, I left for Kolkata early morning and when I reached the Hospital, Saideep's mum was in tears.I was a bit jittery too. She hadn't had anything from the morning and no amount of coaxing would make her eat anything.Then Saideep was taken to the OT around 12 noon, and we waited patiently. While we were waiting, I went to have a look at the other patients on that floor (as is my old habit when I am in a hospital, you can say), spoke to some, and then I saw the SWEETEST, PRETTIEST, FAIREST ANGEL I have ever seen in my whole life!! She was an eight month old baby girl and she had Hydrocephalous( CS fluid in the brain). She had come down with her parents to have her 3rd shunt revision. I got talking to her parents and when the child's dad came to know about Saideep and Vineet, he said - Didi( sister), I request you to give me your phone number, so I can contact you when I have any queries. I did, and he rang me a couple of days back to inform that his daughter's head circumference was decreasing, but it was a very slow process. So I had to tell him that for Vin it took around two years to get to his normal size. So around 4.30 in the evening, Saideep was taken out from the OT and taken directly to the NICU. He was doing fine- we were informed. Praise be to God!


I had to be back with Vineet, so I left for home that day without having a look at Saideep, while others stayed back. I got some fotos and videos per kind favour of my Very dear friend, Germaine, who lives in Kolkata, and went to visit Saideep in the Hospital. Saideep was discharged from Hospital on 10th January and he stayed back some more at his Uncle's place in case any complications arose. Then finally on 14th January, Saideep returned home to us - cured of his pain and happy :)

And this is not the end of his story. Rather its a new begining for him as well as for his family. So much still to be done- the next step is to get his deformed right feet corrected by surgery- we all feel Saideep has very low sensations in his lower part of his body. How much, we'll know only when he starts to talk- and we are praying that God may help him do so soon. For now, we are happy that his appetite has improved drastically and his mum loves feeding him too. Its a good thing :)




SAIDEEP SINGH ON 14TH JANUARY 2013 AFTER HIS SURGERY

(FOR THOSE WHO ARE MORE INTERESTED IN SAIDEEP'S LIFE AND STORY, YOU ARE WELCOME TO LIKE HIS PAGE ON FB. I PUT UP UPDATES THERE NOW AND THEN. THIS IS THE LINK -

http://www.facebook.com/saideep.surgery#!/saideep.surgery

 

 

A newly renovated home with a Front door Ramp!!!

This is probably going to be my First post for 2013! Been busy..very very busy. Had been busy with Saideep's story first which started in mid- December and went on till 1st week of January 2013. All this, while we had already started the renovation process of our home since 1st week of December 2012. So we shifted to the first floor with the rest of the family. There were more wall cabinets added (to make more free ground space for Vin), a low basin for Vineet to wash himself on his own, a low kitchen cook-top ( for Vin to cook if he Ever will!!LOL!)'' i will never ever learn to cook'' --- this has been typed by Vin who was watching me write this blog :) And the BEST part - the front door ramp!! That was the Totally Coolest idea that Vin's dad got while the entrance to the front door was being shifted from one side to right in the middle. Only a small drawback arose - its a wee-bit steep and maybe risky for Vin to be on his own on it. The side railings are yet to be constructed but I'm putting up the foto nevertheless...

Thats the front door ramp (side view)

Ramp (front view) without the side rails yet
 

So now the entire problem of Vin being lifted up right from his bedroom to the car has been solved! :)) God is SO SO Good!! Thankyou Jesus for loving Vineet so much!! Now Vin can go anywhere he pleases around the house. He can also reach his school books cabinet, story books cabinet, toy cabinet, secret cabinet ;) , and now he can also go to the staircase basement and call out for his cousins on the first floor! Nowadays I see him go right up to the other door and he sits and watches people go by. Now he can go play cricket with his cousins or simply wheel around the by-lanes, even when me and his dad are at work. And for Vin ,the Bestest part is- Now NO ONE can hide from me! not even in the kitchen like earlier, while playing 'Hide -n-seek'!! :))

Bed Sores and Pressure Sores

2 days back I checked Vin's back (as I always do- its become a habit now), and to my utter dismay found a small round bruise just below his SB site. For half a minute, all the memories associated with his previous sores came back. First I scolded him for not taking note of his back and then I thought why does it always happen in winter when the sore would take longer to heal due to layers of clothing . Then I told Vineet- We both can make it right, only you have to help me.ok? And he nodded his head in affirmation. Now I have to personally take charge of changing his diapers once in the morning before going to school and then again in the evening after lunch. But the very next day when I came home from work, I saw that it had increased in size.My daughter told me that he had acted naughty with her and the maid and had lied on it. I am at my wits' end. Now Vin has to turn around 6 times while wearing his pants- twice for the diaper and 4 times for the pants.Its going to be worse when winter sets in properly and he will have to wear warm inners along with his pants.

WHY DOES IT HAPPEN  
Well, Vin's backbone is curved right in the middle - his SB site. It is called SCOLIOSIS. So it is prone to scraping and bruising. The dry winter makes the thin skin over it easily breakable. The tumour did not have a skin in the begining at all. The Doctors took skin from elsewhere and and grafted onto it. I don't know if they could have done a better job or not, but its quite unsatisfactory for me.....



PREVIOUS HISTORY


Vin had his first back sore when he was in Prep school at the age of  4 (?). He had come back one day from school and there was this small round wound and at that point I didn't know what to do. We took him to the Doctor who prescribed an antibiotic cream and another one. It took a very long time to heal is all I remember. Then it happened again and this time we used a particular ointment that a Doc had prescribed to heal Vin's burnt feet (he had accidently gone on a bike ride without his shoes in our absence, and the exhaust cylinders had burnt his feet), and it worked just fine. Then happened the Third sore and it took our patience away - it stayed for a year and half!!! We tried every possible kind of treatment, but nothing would work! It healed only when we went to Vellore in 2007, and the Doc told us - Keep the wound moisturised with ointment or coconut oil and leave it open all the time. It was the month of June- July (rainy season with high humidity) and when we returned from CMC, Vellore, I followed the Doc's advice and BELIEVE IT OR NOT, the bedsore healed exactly within a month!!!!

So last year when he had a small one again, it healed after 2 months(I think), because of the winter clothing. And now this.......

 

 (I AM WAITING EAGERLY FOR VIN TO TURN 18 SO WE CAN HAVE HIS BACK SURGERY AND IT CAN TAKE CARE OF A LOT OF PROBLEMS......and then the Doc has also told us thats its going to be a MAJOR  RISKY Surgery and Vin will have to stay in bed for 6 months!!! :(((( Its certainly a big price to pay for.....for what?? 'HIGH ESTEEM' , as an SB gentleman, aged 40 or so said in an SB Group.....)

 

I would like to share this link with all SB-associated people. Have a look-

 

Phenix Rod

 

 

 

PRESSURE   SORE now I think that a pressure sore is different from a bed sore, or is it?? Well actually I want to talk here about this particular clot I noticed on Vin's soles in the right leg sometime last year. At first I thought that it was because of his new AFO's that we had just got for him. I thought that the cast had been defective. So I stopped putting them on. But it stayed on and at times it used to go very dark. Then I noticed that when I was putting him to sleep on his left side, the right leg's feet was tilted at an angle so that the heel's position stayed in the same position till he turned around later in the night. I wasn't sure about this being the reason , so I discussed with my brother who is a Doctor, and he said 'Try putting a pillow under his legs and see what happens. See if it improves..". I tried it, and within a week the clot had turned pale and I could see colour returning there :)))  I AM A HAPPY MOM NOW!!!

 

 



About Wheelchairs

Suddenly I find FOUR wheelchairs in my house - of different sizes , colours and make, of course. I keep shuffling them according to 'when' they are needed, and the living room sometimes resembles a parking lot! LOL! So as the story goes, Vin had his first wheelchair when he was about 5 years old. It looked like this

Vineet's First wheelchair (2004)

 

I had cried when it first rolled into our home..it tore my heart,but, of course. But for Vin, it was like a 4 wheeled car! He could not wheel it, but it was enough for him that he could be moved around everywhere. It was the Best option we had in the year 2004, because it was the only one which had the smallest rear wheels.We couldn't be bothered about the front wheels as such... We hardly knew anything about wheelchairs!! It was bought from a shop in Kolkata's Chittaranjan Avenue -its a very long road with Medical Equipment shops on both sides. My daughter Vinisha was just born, and must have been a few months old when I had gone with my husband to check out the wheelchairs there. We ordered this one for the seat dimensions,etc, and since we wanted a foldable one with built-in potty, they said it would take them some time for them to deliver. So Vin's papa went and got it some days later when it was ready. It was made totally of iron pipes, and as we realised later, the foldable part was hardly of any use - it got jammed because of the iron nuts and bolts :( Vin had already made it apparent by then that his favourite colour was 'green'. So I painted the wheelchair green(all by myself, of course, haha), coz the silver looked a bit sickly for a vibrant kid like my Vin :) So now it looked like this

 

Phew! It was hard work!!

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WHEELCHAIR NO.2    

 

 

 

 Errrrr...wheelchair no 2 was hardly ever used. It was totally miscalculated because we thought that with small wheels, Vin could not reach the wheels and wheel it himself, so let us get him one with big wheels with small dimensions.(By now, the shop was ready to make custom-made ones for us - It was a great thing for us back then...) So now we had big rear wheels, Vin's seat size, a little bit bigger front wheels, etc. Vin's dad had gone to order for this one, I made the dimensions myself, but when it came down home, it was a total failure :(  It was just TOO HIGH. We used it for school when Vin started school in April 2005,but when the third wheelchair came over in Feb 2006 , we kept it aside for emergencies as the first one was getting old now. We began our hunt for another decent one as Vin was now was going to start regular school. This wheelchair stayed with us for some time - sometimes people borrowed it for use(say broken legs, etc) , and in the end we donated it to someone needy. I have very few pictures of it. This is one of them

 

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WHEELCHAIR NO. 3   

 Aaaahhh!! What can I say about Wheelchair no 3...I just LOVE it...and so does Vin. One day I noticed an ad about wheelchairs in a small column of our newspaper. I don't remember if they mentioned anything special, because the next moment we had called them up and asked about their address in Kolkata. The person in -charge told us that his agency had acquired some imported wheelchairs from Germany(?) and we could have a look. He told us they cost around Rupees Seven Thousand - a very big amount for us those days...(the iron ones cost only Rupees One thousand eight hundred back then!!) but we still wanted to have a look.
So it was a sort of a warehouse in Kolkata's narrow lanes and the moment my husband saw it, he knew this was the one. But I was a little sceptical about the seat size- it was an adult size, but the gentleman was very very kind enough to call over his own son who was younger than Vineet, and showed us that even he could move it around. As we discussed, the gentleman and Vin's papa got an idea- the foldable wheels could be fixed with velcro straps and not opened fully.Then the adjustable rexine-leather seat and backrest could be folded inside. Of course that would make it a little bit higher, but otherwise, it was Super. The wheels just glided so smoothly and they had tyres you didn't need to pump air into- rubberised I think. Everything about it was just so fine. We were happy except the price part, but we had to invest in this one. It looks like this- we have not put the foot-rest because it was too low for Vin's feet and it was non-adjustable. We would have to find a way to put something there....

The pic date says 28th Feb 2006, at 7.11.a.m.
I think it came a day earlier and this was the first day of school when Vin went with it? But maybe not, as I see that the seat and backrest have been adjusted for Vin and the wheelchair is a little high. Oh! I don't seem to recollect...old age duh! So he was just finishing Kindergarten and about to go to Class I. About the footrest now, it had a clip-in system which was super, but not working for Vin as of now. So we got an iron-welder to fix  iron grooves on both sides like the one he had for his old ones, and put in one of the old footrest.We could put in only one of them because they were big and the breadth of this wheelchair was small.Both wouldn't fit together. It worked somehow...though I was always unsatisfied about this factor, but then we couldn't find any other way....Its the one we take for journeys and outings because because of its big front wheels,it easier to move about. Plus it just snaps shut with a raise of the finger!!:)

Touchwood, its still the BEST we have had till now..as if its blessed by GOD himself. Thankyou Jesus! Praise you Jesus! Its one of the many miracles we have witnessed in the path with Vineet...
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WHEELCHAIR NO  4     



 By now the first potty wheelchair was in bad shape and we needed another potty wheelchair for the house. So off we went to our favourite shop on Chittaranjan Avenue and ordered another one with our own dimensions for Vin. Oh what Super luck this time- it turned out just so fine and right in all ways.The arm-rests were lower as was the back rest.The arm rest was just about enough for a cardboard to be rested on it, so Vin could have meals by himself and even do some home work on it! Super!! :))

I see fotos of it as early as 30th April 2007. Although its potty is no more in use, Vin still finds it most comfortable for meals.
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WHEELCHAIR NO 5       



 Aahhh!!! What can I say about wheelchair no 5 ..... ITS AMERICAN!!!!! LOL!!! I'm laughing with pure joy because never in my wildest dreams did I imagine that Vin would be able to have one of those wheelchairs that looked SO damn Fabulous on the internet. Its a Quickie G T i and I had known about it from various places and SB Groups on the internet even before this one came. Now that I am writing about it, I feel it was a dream of sorts - the homecoming :)
Maria Linny is my messenger from God - she's been sent to help me and Vin in all our difficult times...I became friends with her on the net via the Spina bifida group that I have made on ORKUT. I shall have to have a seperate place for her here later I realise now. Coz Vin's journey is incomplete without me telling you about Linny (hugs for you Linny). So Linny was coming down to India in June 2009 and was bringing down her daughter Teena's extra wheelchair which was battery-operated. I couldn't believe my ears when I heard about it. She was coming down to Bangalore and we decided we would meet there. It was so un-imaginable that someone whom I had never met in my whole life was taking all the trouble to get a wheelchair with batteries and two sets of wheels, all the way from USA. Till the time we both met in Bangalore, both our husbands were so sceptical about the whole episode! haha! They kept phoning each other up to ensure it was actually happening!! But then miracles do happen....

It has jazzy light-up front wheels (which amaze people here all the time :), a pair of back-wheels for support and to avoid toppling , detachable armrests and everything about it so USA-made. He removes the armrests when he's practising his Octapad. I sometimes can't believe there ARE people who make a wheelchair so lovingly....So one set of wheels can be 'hand-pushed', while the other has batteries attached. So even at the slightest push, it can go faster than hands.Now Vin got a scare the first time when he sat on it in Bangalore with the battery-wheels,so he's still afraid to try them out, but the hand-driven ones are his favourite as of now.He can even play cricket on it!! :) Yes, we have to pump air sometimes. The footrest was high with the 'pressure-seat' Linny gave us, and low without it. So now we have our own-made cushion seat for him. I decorated it with white ribbons for Vineet's First Holy Communion in 2010. :)

            14th November 2010

WHEELCHAIR NO 6        





Now Vineet's second potty wheelchair (the comfortable home one) was getting old and rusty. So we had to get him a new one. Now inspite of me tediously taking measurements, Vin's papa tediously taking it down on the phone, and ordering it , it came with one disaster - high armrest. In fact too high an armrest. Now Vin does not want to let go of his 'comfy-wheelchair'.


SO THAT IS HOW THERE ARE 4 wheelchairs in my living room!!! Hahaha!! Not that I mind at all ;P Its good for the other kids of the house who sometimes like to race!!

(A small note-
And now I have my eyes on the 'beach' wheelchair wheels. Recently I was going through my old saved fotos and I came across fotos of beach wheelchairs. It looks like this-

Most of them were motorised and out of reach for us. I thought let me see if there have been any new improvements in them. I googled and saw some videos ,and then I came across this site-
CLICK HERE FOR THE LINK TO THE WEBSITE HOTSHOT PRODUCTS

This guy Hank is good coz he's given the option to just change the normal tyres of a normal wheelchair into balloon tyres with the help of some attachments at a price we can afford. I'm very very keen to proceed into this thing because our family loves the beach and so does Vin. In fact he's told me -Lets go to Goa again!! So I have told my dear friend Linny to look into it, and of course she too is working on it :) Love you Linny!