Visible Progress

Tanvi started treatment under Dr. Vasa on 19^th August 2012 at age 16 yrs, when I had given up all hopes as every other doctor that I consulted told me she is too grown up and I should accept her condition of quadriplegic cerebral palsy; she is severely brain damaged.

• Within the first two weeks of starting treatment with Dr. Vasa, Tanvi was able to take weight on her hands in cobra posture and manage herself on her own in cobra posture with little external support at elbow to keep it extended by me.  By doing so, she was able to keep her trunk lifted with arm support and she could have good visibility of the surroundings.
• She was so unstable always and used to shake her head, neck, and arms involuntarily. Tanvi’s neck always rotated to left side so much that she hardly could focus on anything without shaking and therefore she was not able to get the picture of what she saw enough long to know fully. We all know that there has to be eye-object contact for sufficient time in order to form an image on the retina; only then we can visualize any object.
• She soon became stable in dog posture and stopped falling sideways from Dog posture. This made me very happy; she kept her own balance in Dog posture for few seconds. Shaking reduced.  No other doctor ever thought of doing anything to correct those involuntary movements or give any medicine to correct the condition.  The therapists had already told me that Tanvi will have to manage with those involuntary movements for rest of the lifetime.  I was so much worried because these movements looked so odd in my growing daughter besides hitting us if we came on her way.
• She has also now begun crawling forward on her knees from dog posture.
• She is still not opening her left palm completely. Her wrist still remains hooked.
• Tanvi is sitting more erect now.  By doing dog to cobra her arms and trunk muscles have become stronger.
• She can now maintain in Namaz posture for 3 minutes without any support.
• From dog to cobra posture she is trying to take her legs back in extension, but not able to maintain weight on hands; we have to externally support her elbows in extension to remain straight manually.
• She is able to maintain dog posture for 2 minutes now.
• On 25^th August 2012, suddenly at the center, she walked 3 -4 steps independently for the first time in her life without any splints, without any kind of external support, without any one of us holding her to walk. This was amazing to see.  I got so confident now that my child is going to only progress hereafter.  There is going to be no deterioration in her health any more.
• She is attempting to do Namaaz to knee stand exercise and reaching for toys (15 times).
• She jumps on the trampoline with me supporting (20 jumpsat a time).This is helping her with her foot getting in shape; she has right greater than left hind foot valgus+.
• By the end of September month, Tanvi had begun doing exercises for 3 hours per day (though it is less as compared to other children working with Dr. Vasa, it is much more as compared to the kind of passive exercises she had been doing till date with other therapists).  In between she also does sit ups and hand extension by herself.
• In cobra posture, with her hands supported she is stretching her legs backward on her own now, which she was not able to do before.
• After 4 weeks of exercises, on the trampoline now she is able to jump holding the rod; though the jump is not too high.  It was impossible for us to imagine her jumping at a spot and at the same time enjoying doing the same.  She had always been forced to walk with support and forced to stand with support.
• Because of the adductor muscles tightness and hip flexion contracture and internal hip rotation contracture her knees used to touch each other while we forced to stand and walk. Now by doing dog to cobra, sit to stand, jumping on trampoline, etc, her adductor tightness has reduced and hitting of both knees to one another is not seen any longer.
• She is trying to move forward on her knees.
• Her sleep has improved.
• There were lot of skin impurities in the form of dark patches and skin eruptions on Tanvi’s back and legs; with improved blood circulation, this is getting cleared too.
• In the month of October, I could see that her elbows which would always remain bent and her arms constantly involved in doing involuntary movements have improved to a greater extent with all the exercises which were designed to keep her hands engaged in supporting the various postures given.
• Tanvi’s body which was very stiff earlier has become reasonably flexible now.  Her trunk appears straighter now; earlier her trunk would remain bent with a C-shape on sitting.
• She seems more happy and relaxed now.
• Now she is able to maintain cobra posture for 5 minutes with little support at the elbow. 
• She is able to wear bangle in her left hand by herself which she was not able to do earlier at all.  I was shocked to see her do this.  She is becoming conscious about her beauty which is quite age-appropriate.
• Now she also tries to open tap with right hand.
• Her response to any external stimulus is much quick than ever before.
• Now she is able to sit cross leg and have dinner. Earlier she was not able to sit in this posture as there was lot of stiffness at the knee. I feel for my child so bad in thinking that how much she suffered from stiffness and how painful it must have been for her to bear the stretch that previous therapists did to her which is why the moment I used to dress up Tanvi to take to the therapists, she would begin crying.  As I am a working mother, I always depended on the therapists for her treatment. 
• Now she is crawling faster.
• For the first time in her life, she was able to eat a banana with her hand; earlier we had to feed her. As involuntary movement is reducing, her hand-to-mouth coordination as well as hand movement has improved remarkably.
• Time limit for hanging on the rod has increased for both the hands; previously she was not using her left hand to hang on the rod.
• Previously she was keeping her left hand bent all the time, now she is able to keep it straight for much longer time even when is she is not doing anything.  This change we have observed after starting with the exercise of loading left hand while she is lying sideways on the ball.
• Now she is able to sit much longer, at least for 5 minutes continuously in the Namaaz posture.
  In the month of November, Tanvi managed to keep her leftarm straight while in dog posture. Though the hands get fisted frequently, she is trying to keep them open.
• In standing position, the left knee is getting internally rotated, but the degree of rotation has decreased and knees no longer hit one another.
• Our family members, who saw her after long time, commented that she looks fresh, happy and better than before and since her involuntary hand movements have decreased a lot, she looks more stable and calm in appearance.  Everybody notices her improved complexion now; this is because of her improved blood circulation.  Outside people also feel that Tanvi has become very vocal now; previously she was a very quiet person, not speaking at all.  Now that she understands about beauty and presentation, she demands attention from everyone around.
• In so many years of her various types of treatments, I never noticed these many number of changes in such short duration.
• Tanvi’s babbling has also increased a lot.  She tries to speak new words.
• If I ask her any question, she tries to recollect things before answering.
• Now she has started getting tickling sensation in her feet when she is sitting in one posture for long time.
• Now she also manages few times to bend from the chair and to stand. Not only this, she also manages to throw the ball in standing position.
• Now she tries to do cobra on her own.
• She has realized she looks good when standing erect. Crooked bent posture is a thing of the past for her.
• She is insisting on standing in front of mirror with the walker.
• Her appetite has increased and also the urine output has increased. Constipation is no more an issue; her constipation is gradually decreasing.
• In the last week of November, we focused more on cobra and sit-to- stand. Cobra she is able to maintain for quite long time. In sit-to-stand from the chair some improvement is seen as she is able to get up when trunk is kept bent forward.
• Now she can keep her feet flat on ground when standing with ball support, no more heels going up in standing. 

Visible Progress

• Tanvi can now stand straight for at least 10 minutes with little support at her pelvis.
• Tanvi vomited a hell of a lot one morning and it was all highly sticky like thick gum with foul smell, I got worried and called Trupti and to my surprise Trupti reacted very happily saying this is good, now Tanvi will see some more light in her life, there will be bigger physical and behavioral change in her and asked me not give her drug to stop vomits, rather make sure she gets more episodes of vomiting so as to get to new and higher development. This, to me was a bit scary but I followed their advice and tried to remain calm hoping for the best. Tanvi was normal after vomiting and slept well, ate well and was cheerful as well.
• One morning after doing exercise with Tanvi, I had left her alone on the floor to do crawling. Suddenly she put her hands on the bed and came into cobra posture and was also trying to get into camel and hanuman posture.
• I make her sit on chair and put some toys down on floor.  Tanvi is able to get up from chair, extends her hands actively and picks up the things from ground and again sits in the chair.  From this I know that her body which was very spastic before has become quite flexible now.  While doing this her knees are quite apart.
• Tanvi is able to speak few words like Mama, Aaba, Uncle very clearly and with confidence. Even some of her friends can understand her speech to some extent.  She also tries to communicate with gestures.
• Her interest and curiosity in knowing the surroundings has increased.  She constantly keeps asking me questions about the surroundings. Earlier as if she was not part of all of us, her existence was simply for us to take care of her and she would lay passive and disinterested and drowsy and not one among us. It is an incredible change that now she is part of all what is going on in the home.
• Sleep is quite improved as compared to before.  Now she can sleep peacefully for 5-6 days in a week, sleep still bothers her 1-2 days a week.
• Her tendency to pull her own hair has reduced to a great extent now.
• Now, the duration of sitting in Buddha posture has increased and she is able to sit at least for half-an-hour.
• Now we are in 2013 January, Tanvi appears more erect and in proper posture.   Her back doesn’t appear scoliotic C-curved now.
• Now she tries to attempt exercises like cobra, sit-to-stand on her own.
• Whenever I am dressing her I get her into standing for a while, but now there is no more joining of knees as was seen before.
• Now, she is able to stand straight with one hand support.
• Now she tries to get into camel posture on her own.
• While standing and bending, she is able to keep her feet flat on the floor; now her tendency of standing and walking on toes has decreased to great extent.
• Now her memory has improved.  For instance, when I return home from work and ask her about daily events, she would never answer without prompting; now she is able to describe her daily activities by herself.
• Namaaz to knee standing on the ball has improved and also her jumping on trampoline.  Now she jumps on her own; we need not hold her hand, we just stand by her side to safeguard her.
• In the month of February, I noticed her questioning has increased now, like why some children are kept in hostel; how did you prepare this food; questions related to television shows.
• She is very keen to stand on her own from the chair.
• Now days she wants to do cobra, sit to stand on the ball without any support.
• She is trying on her own to get into cobra posture.  She stops me from supporting her hand. 
• Now she has become very interested in cooking and wants me to try new recipes and when I am cooking she sits and watches.  She was trying to roll a roti the other day.
• In the month of February, I noticed that she is now able to sit in Buddha posture for more than an hour.
• She used to frequently get skin eruptions; this has almost stopped now without any medicines. Even her back has become clear of the dark patches.
• Her involuntary hand movements have totally stopped now.  Last week in a restaurant she was sitting completely stable and I had no issues feeding her with spoon. She voluntarily brings her mouth forward while feeding.  I had never even dreamt about stopping her involuntary hand movements.  Dr. Vasa designed such postures and exercises for Tanvi that her hands got engaged into maintaining those postures and the dyskinetic movement got diverted to co-contraction to maintain dog and cobra posture.
• Her observation and choices about the food taste has improved.  Now she tells me if the food is bitter or salty in taste; previously she never could make out the difference in taste.
• In the month of March, I see that during knee walking she is keeping both hands down by her side; previously her left hand used to always remain bent on to the chest.
• In cobra posture, her pelvis touches the floor without any external pressure.
• Now she even tries to get into camel posture from standing posture by putting her hands down on floor.
• Now when she is sleeping at least for one to two hours, she is keeping her hands and leg straight; previously while sleeping her posture would be like that of a baby in the mother’s womb, hands bent, knees bent and brought towards abdomen.
• Now she can stand for good amount of time with support of ball and that too with both feet flat, knees straight and not internally rotated; previously she used to stand on her toes with knees internally rotated and bent inwards.
• Her water intake has increased; previously she used to drink only 2 glasses of water a day, now she drinks 4 glasses of water.
• I am looking forwards to more development in my Tanvi.