2009

  • Aug - Dec

    Visible Progress

    • We totally stopped making him stand.
    • He did good standing in sand for 2 hrs and also some days he did sit-stand till 100 counts in one go.
    • He started to take weight on his hands and managed to do sometimes 5 pushups.
    • His ability to balance himself and maintain in one position improved.
    • I always tell him to be up on his knees for good balance when he is watching TV and nowadays he has became cheeky. When I am not around he will sit down and soon when he'll hear me coming he will quickly stand up on his knees. Shivraj didn't had this thinking I was bit shocked at first to notice but everybody in the house has noticed it. I am happy for this, atleast his brain is doing some thinking.
    • His communication skills and thinking skills have improved. For eg: When he is playing in the Playroom (with Kitchen set), he will nicely play with his sister and will ask her what to do next, what to cook, is it hot and sometimes will take turns.

    His ability to balance himself and maintain in one position improved.

    Shivraj - fine finger movements

2010

  • Jan - Jun

    Visible Progress

    • I gave him 10 spellings and asked him to read them and then write it down without looking. (Recalling). I just wanted to see if he can remember and to my surprise he was able to remember 6 words out of 10 and was able to write them down without any mistake.
    • Shivraj is able to do good knee walking now as compared to few days back.
    • He has gained good confidence in reaching on ball exercise.
    • Shivraj's counting skills have improved and he is able to write the numbers on instruction up to 500.
    • His addition skill has also improved. He is able to add numbers up to 10.
    • In writing skill little improvement is there.  He is trying to stay on the line and write.
    Shivraj attempting camel - cobra
  • Jul - Dec

    Visible Progress

    • Shivraj has in total reduced  7Kgs so far.
    • His skin looks fair than before
    • His legs muscles have definitely relaxed and also there is good flexibility in his body.
    • His pencil holding grip is better now. He used to find it difficult to make humps and zig-zig. His zig-zig use to look like humps but now he can do both very well and can nicely write "V" now.
    • His scissor using skills are getting better.
    • He finds easier to eat with hands rice and daal and he will make pieces of roti and try to take vegetable and eat himself.
    • He is able to move beads on string with first finger and thumb from one end to the other; still finds bit hard to do the same with left hand.

    His pencil holding grip is better now. He used to find it difficult to make humps and zig-zig. His zig-zig use to look like humps but now he can do both very well and can nicely write "V" now.

    Shivraj - performing Buddha posture on Ball

2011

  • Jan - Jun

    Visible Progress

    • After a long battle with the school and the Educational Governing body we managed to get admission for Shivraj in the same school.  Shivraj was very happy to be back into the school. We provided Shivraj with the powered wheelchair so that he doesn’t use the walking frame. Everybody noticed a good change in Shivraj. The teacher and his caretaker found his concentration and listening level had increased including his writing skills. They also found him more flexible in terms of reaching for the pencils on the table.  Shivraj would everyday come back from school and tell everybody what he did at school; this he had never done before. We as a parent were pleased to see this improvement. He would open his bag every day and would show us his reading book or any letter he got from school.  He got better day-by-day in his exercise too.
    • His social interaction with his sister also got better. They both would play nicely together most of the time picnic game. They enjoy sharing the music they like together and dance to the song too.
    • Shivraj also did start to dress up by himself for eg: putting t-shirt and track bottoms on. He brushes his teeth and goes to toilet himself.
    • Shivraj and Nikita (his sister) will play together and he enjoys playing hide and seek together.
    • His counting ability has improved too, mostly addition.
    • He likes listening songs and after he has listened couple of times he knows the rhythm/ lyrics and likes to sing as well.

    He likes listening songs and after he has listened couple of times he knows the rhythm/ lyrics and likes to sing as well.

    Shivraj - balancing on one knee
  • Jul - Dec

    Visible Progress

    • He is able to remember more and will tell me what he did or what happened at school in detail. He didn't do this when he used to go to school a year before. He actually remembers what he did in morning and afternoon i.e.  after lunch break.
    • Also while doing his exercise he doesn’t complain about pain as he used to do before when we started the exercises.
    • Shivraj’s speech has improved a lot than before.
    • He is enjoying his school and is progressing in his studies too. He does seem relaxed than before.  He looks forward to go to school every day.
    • We were very pleased when he himself came out of the sand bag one day. He with the support of the table pulled both his legs out of the sand.
    • He knows all TV channel’s numbers and starts the TV by himself and changes the channels too.
    • He is interested in gardening and will join me in digging and planting with some help.
    • We can see all the natural feelings coming in him now like getting angry, showing tantrums and happiness which a normal child does. Sometimes he gets angry with me and says 'mummy I am not talking with you because I am sad', on asking why you are sad he will say ' I don't want to do exercise as I am tired'.  He goes to school for five and half hours daily and still he is ready to
    • He does all his exercises after coming home and also some days does them in the morning itself before going to school. He wants to walk and will also ask us why I am not walking? Or when will I start walking?

    He does all his exercises after coming home and also some days does them in the morning itself before going to school. He wants to walk and will also ask us why I am not walking? Or when will I start walking?

    Shivraj standing up to switch on the lights

2012

  • Jan - Jun

    Visible Progress

    • He very well does pushups, rolling over, crawling up and down the stairs, one leg on bed and one on floor and bending back to reach for toys.
    • He will himself count the date for next few days for eg: today Wednesday it's 23rd,  then tomorrow Thursday 24th and so on.
    • He recently had been to school trip without me (first time in his school life), which shows that he has grown his confidence and have enjoyed his trip very well.
    • We do knee walking race (kind of game for him) which he enjoys and will try hard to win.
    • Also we play a small game of rhythm like clap + tap + twirl which he does it very well and he can keep up his rhythm with his sister.
    • Shivraj seems to be more alert and has got more awareness now.
    • Shivraj is able to remember his daily activity at school and will tell what he did. He also remembers what is going to happen at school next day for eg; "if it is the library on Wednesday and Art club on Tuesday".
    • Also his grip to hold the shirt buttons has improved in his right hand compared to left hand.
    • His levels in education have also improved. He is getting better in comprehension also (question & answers).
    • He is flexible in all his exercise.
    • He can play games on a small handheld (Nintendo 3DS), in which he has to hold it with both hands and use fingers (both hands).
    • Shivraj's interaction skills have improved.  For eg: when he is interacting with Nikita (sister) he will definitely come up with some new questions. He will ask her at the end of the school day 'What did you do at school today?  In fact he will also ask me 'what I did at home?'. He likes to be kept informed. If we are on road he likes to know 'what road we are on name/no. of the road?'
    • Emotionally he shows his frustration over the exercises and also gets very upset that he is not able to walk. In fact he asks me everyday 'when will I start walking?' Also during the exercise he will ask 'Is my pelvis still tight and why is it tight, I am doing the exercise every day?'.
    • Whenever I will write an email to madam, he likes to find out what madam said?
    • He will also help me make grocery shopping list and prefers to keep it, so that he can tell me what to buy.
    • Sometimes he speaks very clearly, but I have noticed that when he wants to sing a song (a line) he is not able to maintain the clarity.
    • Education wise his reading is improving. He has started to read a book which has more than 10 small lines. But sometimes needs reminder not to skip the line. He knows 2, 3, 5, and 10 multiplication tables and got better in single digit addition but still struggles with subtraction.
    Jan - Jun

    Shivraj's interaction skills have improved.  For eg: when he is interacting with Nikita (sister) he will definitely come up with some new questions. He will ask her at the end of the school day 'What did you do at school today?  In fact he will also ask me 'what I did at home?'. He likes to be kept informed. If we are on road he likes to know 'what road we are on name/no. of the road?'

    Shivraj - wearing clothes

2013

  • Sep '12 to Apr '13

    • Shivraj is doing good standing up (catching and throwing ball). He is able to stand continuously for 5 minutes at a time and do the ball activity, he will sit for a second or so and then he will stand up and continue.  We are doing this exercise for at least 30 minutes every day.
    • He is also doing good sit to stand and cycling indoors (weekdays) and outdoors (weekend).
    • He is also doing the dog-cobra, cobra, cobra with legs bent, camel with one leg kicking in air with powder and alternate legs in flexion and extension; his movements have become very swift now.  His body is becoming more flexible and loose with this.  The stiffness at pelvis is reducing.
    • Wrist extension on ball: doing very well with his right hand compared to left hand which is really stiff.
    • Now he comes on knees and catches ball thrown at him very well at the same time maintaining the posture.
    • Now he can do skating holding the rod overhead on his own, we just need to give him verbal commands and he follows them well.
    • His balancing in standing posture has improved. He is able to stand for at least 5 minutes continuously while doing the half an hour standing activity.
    • In monkey on rod exercise he is getting up by himself and trying to touch his knees.
    • He has started going school and everybody commented on Shivraj saying that he looks fresh, happy and very vocal.
    • All family members are very pleased with constant ongoing improvement in Shivraj's speech and communication.
    • When we came back to London, Shivraj was telling all about his India trip to his father and grandfather.  He even told them about the conversation he had with Dr. Vasa regarding to his walking.  They are very impressed with his standing up and catching-throwing ball. Shivraj for first time in month of April 2013 did cycling without me putting bandages (crepe bandage) on his feet. He only needed little help with his right foot to keep it on pedal. He did cycling indoors for half an hour as it was raining outside.
    • Regarding his studies, he has gone up by one level in both Literacy and Numeracy. On the GLOBE he is able to show where India, UK and South Africa is. He will go on the search engine (ipad) and will type what he wants to look into for e.g: if he wants to listen to any song he will log on to YouTube and type in the song to listen.
    • For first time in these many years he enjoys watching movies (kids movies) in cinema and will ask us to take him or will plan a weekend by himself. He remembers (date) when the movie is releasing and will not let anybody else forget it too. His understanding and sense of humor has also improved. He will laugh at appropriate scenes while watching movie or kids programs.
    • Recently he has shown interest in different TV programs related to 'Cars' and 'Train journey'. For that reason we also took him to 'London Transport Museum' to gain more knowledge on old cars. He enjoyed and was asking questions like 'How old is this car?'. Some cars were from movies so he enjoyed the museum trip for first time.
    • He enjoys watching cookery shows which is his favorite.
    • His gait and balance is improving since he started nearly 2 months back. He will confidently walk down the slope at home. Shivraj seems to be getting more and more flexible in all his exercises.
    • Even at school his Art teacher has noticed a good improvement in his fine motor skills. He enjoys his art club and looks forward to it. He has improved in his cutting skills, sticking and drawing.
    • He enjoys swimming and he has learned quite a lot in swimming like swimming on back while kicking legs, bend-open-together movement where he will actually say while doing it and his coordination has improved too.
    • He enjoys giving company while I am cooking and would like to help too in chopping and mixing.
    • In particular I have observed that previously in standing posture because of the contracture at hips Shivraj used to have a bent posture like Donald duck which has now got corrected.  He can now align himself straight while standing and catching a ball etc.

     

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