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..

 

The Cure - Episode 5 : Wearable Robot (courtesy- AlJazeeraEnglish)

I am goin to have a sleepless night because of this video I saw today!!!!!!!! I'm just SO SPEECHLESS!!

VIN GOES TO SEE THE TAJ MAHAL !! (DAY 4)

We returned very late in the night from Fatehpur-Sikri to Delhi. Next morning we rested and left for Raj Ghat (the ashes of Mahatma Gandhi laid to rest here) and then to Red Fort. Raj Ghat was a Beautiful place and if time was not a constraint, we would have liked to sit there a while in the cool breeze and listen to the famous song-' Vaishnav jan toh...' being played all the while..



RAMP AT THE ENTRANCE TO RAJ GHAT



VIN, HIS GRANDMOTHER AND SISTER AT RAJ GHAT

Thereafter we went to the 'Red Fort' which was nearby and our van was let in right upto the Ticket counter because of Vin! :) There was a good amount of Security there and when we went in, there was a flea market there! As we went in further, we visited a 'Pre-independance' Museum as well as a museum with stuff from the Mughal Ages. It was quite an eye-opener for Vin and his sis. The grounds were very extended and by the time we covered most of it, our legs ached from all the walking. Ramps were built everywhere and needless to say, I was very pleased with Delhi after all this.

So that was the last day of our visits to historical places in and around Delhi. Even though I have not put up pics here, but I must mention that in Delhi there were ramps all around even in public places, all the bus-stands, and I even saw a wheelchair-lift for taking them down to the Metro-station. So I shall conclude here by voting for Delhi as the 'Most Accessible' city in India. And a Very Special Vote of Thanks to the 'Archaeological survey of India' for making Vin and so 'our' trip a very 'accessible' one!

Oh wait! I had said in the 1st part of this Trip series that I would mention about the New Delhi railway Station again. So while we were boarding our return train, we booked two coolies again and as we were alighting from the stairs on to our platform, what do I see? A mini golf-cart on the station with 2-3 aged people on it. I stopped, asked the driver how he came onto the platform and he answered - there are two ways ma'm. but why? ' And I showed him Vin coming down the stairs in his very tired dad's arms and said- these coolies made fools out of us. He said -Please take my number and if you ever come down again, please call me and please know that we are always at your service.' I smiled. So New Delhi lived up to my expectations- Most wheelchair-accessible City :)

VIN GOES TO SEE THE 'TAJ MAHAL' !! (Day 3)

And so finally on Day 3, we were all set to visit the Taj Mahal in Agra. Agra is a city located some 200 kilometres from New Delhi and we can go there by train or bus or even hire a taxi. We opted for a Taxi because it would free us from the 'time-fixes' in all other modes of transport. We opted for the new 'National Highway' from Delhi to Agra. Its called the 'Yamuna-ExpressWay". Yamuna is the name of the river beside which the Taj has been built. It was the neatest and best Expressway I have ever experienced until now :)


THE 'YAMUNA EXPRESSWAY'


So we reached Agra after 4 hours, but it could have been earlier- our Taxi had a tyre puncture! We reached at around 12 noon. New rules!- we had to leave our Taxi at the stand and hire a'Battery-operated' rickshaw. This so, because the Taj was getting corroded due to fuel emmissions. Good thing. The bad thing was , that the fellow who's taxi we hired charged us a whooping hundred bucks for a ride of 3 minutes, when it should have been only Rupees 5 per head!(as we realised on our way back from the Taj). There were also available horse-tongas and camel-tongas, and although Vinisha saw them for the first time, she kept snorting her nose at the smell of animal-crap all around. You couldn't see them(the place was neatly maintained), but you got the stink :/

Then we bought tickets for the Entrance and we had to go in queue while Vineet the Great had Direct Access through the Main Gate with his dad as escort!! He really is a 'Maharajah'!! :D

Entrance to the Taj Mahal

A little tragedy happened here and it had to do with Vinisha's favourite 'Snow-white' Princess doll that she carried along till here in her bag- the security people naturally confiscated it- A doll was good enough to put bombs in it. Never mind it it was 'Snow-white' or a Princess doll, or Vinisha Victor's favourite doll- the lady-constable almost laughed at Vinisha!So I had to go all the way down the road to a 'Locker room' and deposit her doll for a small fee. When I returned, Vinisha was almost in tears and only when I consoled her that 'snow-white' was resting safely in a room, that she felt okay! :D Girls!
So we walked in, and my smile came back- there were ramps all around!!

 

FINALLY!! THE TAJ MAHAL!!!

 

AND THEN CAME THE BLOOPER OF THE ENTIRE TRIP- THERE WAS NO RAMP TO GO UP TO THE MAIN MAUSOLEUM OF THE TAJ

WE WATCHED  HELPLESSLY AND THERE WAS NOTHING ELSE TO DO EXCEPT CARRY VIN UP THE STAIRS.

THE GUARD WAS SO 'UN-HELPFUL', HE EVEN REFUSED TO LOOK AFTER VIN'S WHEELCHAIR HERE, SO VIN'S GRANDMA VOLUNTEERED TO STAY BACK DOWN ('COZ SHE HAD BEEN HERE EARLIER TOO)

 

 

NEEDLESS TO SAY - WE WERE TIRED AND DISAPPOINTED.................

So Vin's dad carried him up the stairs and with much difficulty reached the parapet where people could sit down. After taking a small rest , Vin, his dad and Vinisha went in and walked across through the mausoleum and then we took some pictures. Then we decided to go back down. Uh-Oh! More trouble. The wheelchair was at the Entrance side and the 'Exit' side did not have a Ramp!! Poor dad had to carry Vin some more after climbing down the stairs. He was totally exhausted! Someone Please TAKE NOTE!! Its not as easy as you would like to believe!!

 

 

We left tired and a little disappointed, but took care not to let Vin feel 'our' disappointment..

 

Next me and Vinisha walked to the Locker room again to collect her 'Snow-white' and the man at the counter didn't even check our token! One look at Vinisha and he knew the doll was hers!!LOL!!

:)

NEXT WE WENT TO SEE THE 'AGRA FORT' SITUTATED NEARBY

Here we got ourselves a 'Helper' to wheel Vin around and this was an intelligent thing to do we realised as we went up the slope towards the castle. Here too, we found wheelchair ramps all over the place and my smile came back :))

 

We made a quick survey, watched the Taj again through the castle windows and hurried towards 'Fatehpur-Sikri', a place well-known for being made by Akbar the Great Emperor and the 175 feet tall door called' Buland Darwaza'. It was supposed to be an hour or so ride from Agra and since it was already afternoon, we rushed. We reached just in time for the last bus up the hill to the castle, and Surprise of all surprises- There was a ramp leading up the adjacent door. So we had Vin being able to go up to see a 175 feet tall door called 'Buland Darwaza' made by Akbar the Great!

 

 

THANKYOU INDIA TOURISM DEPARTMENT AND ARCHAELOGICAL SURVEY OF INDIA! THANKYOU SO SO MUCH! YOU HAVE NO IDEA WHAT YOU HAVE DONE FOR A SMALL BOY ON A WHEELCHAIR!!

 

 YES, THAT WAS AS HIGH AS VIN WAS ABLE TO GO! THANKS TO SOME WOODEN PLANKS AND SOME HUMANE PEOPLE! :)

VIN GOES TO SEE THE 'TAJ MAHAL' (DAY 2)

The next day we went to see the 'Qutab-Minar'. It was evening time and the place was full of tourists. As we neared this very well-known ancient monument, what a surprise! There was a ramp leading upto it!

THE FIRST RAMP LEADING TO THE MONUMENT



I was overjoyed needless to say- all my worries of Vin being able to go upto the monument vanished!!It was a very very high structure and we had to crane our necks to see its end. There were some more ancient structures in the campus and Vin was able to go everywhere- Thanks a ton to 'The Archaeological Survey of India'. Our gratitude is beyond measure :)

RAMPS GOING UP TO THE "RUST-FREE' IRON PILLAR

THE 'RUST-FREE' IRON PILLAR IN THE BACKGROUND




 

It was a beautiful day and inspite of the sun, there was a lovely cool breeze all around. We then left the site to go to another beautiful monument- The Lotus Temple. Its built in the shape of a lotus and somewhat resembles the 'Opera House' of Sydney. But we ran out of luck - All monuments in and around Delhi shut down by 5 p.m. So we could only have a glimpse of it from outside the boundary. Here is how it actually looks like-

THE LOTUS TEMPLE IN NEW DELHI


That was the end of Day 2

 

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 4

So these are the 3 most important miracles I experienced with Vineet. And of course there have been hundreds of others which we experience everyday but eludes the memory. For example, the day when he toppled backwards in his wheelchair but didn't get a scratch because his head landed on a pile of thick blankets kept at that very place!! :) Amazing no? Then there was this instance when we were travelling and didn't get any lower berths and were just wondering what to do when we found that one of the lower berths belonged to a student of the school where Vin's dad works. And he not only switched places for us, he even readily went to the other compartment where our other ticket was. So such miracles do take place, which may seem non-existant to a non-believer, but for us who experience these small ones, it makes big differences. Oh , and I must add one more - its interesting. Vineet is super terrified of the noise of crackers which people burst during marriage ceremonies or during festivals. Now here in West Bengal, India, we have a festival wherein people burst crackers throughout the night right upto the wee hours of the morning. And every year when it approaches, we get ready with Vin's MP3 player, ear phones , etc- all charged for the night. :D Now when he was younger and we hadn't yet found out this earphone idea, One particular year during that festival, Vineet cried so much, and prayed so much, it rained throughout the night till morning . So much so that our locality which is famous for Rainy season flooding, it got flooded that night, so no one could burst any crackers!! Can you believe this??!!!

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'!! :))