2012

  • Aug - Sep

    • We started treatment with Dr. Vasa on 22ndJuly 2012, Gatha is 7 years old. Within two weeks of starting the treatment, one fine morning on 7th August, 2012, Gaatha started vomiting at around 6.45 a.m. and continued till 8.30 a.m.  We were panicked and called Dr. Vasa urgently and doctor enquired if there are any food particles and what is the content of the vomitus.  I answered it is all sticky mucous and no food particles.  She also asked how is Gaatha feeling now; I replied she is playing; she is fine and relaxed, not crying.  Dr. Vasa said that Gaatha's body has started responding to the exercises and her major physiological excretory system is actively expelling the waste products and therefore nothing to worry.  Do not get panicked if such an episode repeats; it is welcomed.  She also told me to talk to other parents so that I do not panic and came to know that other children also had gone through similar phase after starting the treatment with Dr. Vasa.
    • One day afternoon, I kept Gaatha on bed. But when I saw her after 15min, she hadmoved to other side of the bed. This had happened for the first time in 7 yrs.Her body was so tight like a log that she could not move from one spot to another on her own earlier.
    • At one instance, while I was dressing her in the evening in the standing position, she was initiating walking though there was scissoring of legs, but it was almost after 2 years that I saw my child lifting the left leg with hip dislocation taking it forward.  Her both legs always stayed in severe knee extension and I could never bend it even passively. Doctor banned me from making her stand even while dressing up. I was told Gath must stand up by herself, making her stand up passively is bad for her weak hips. This is one of the reasons why hips dislocate, premature standing, when hips are weak and adductor spasticity is severe with legs crossing.
    • Gaatha has begun doing cyclic movement of legs which she had never done before because of the severe extension posture of both legs.
    • Gaatha cannot use any of her hands.  Both her arms are sticking to the rib cage with severe pectoral tightness, both elbows remain bent, fingers remain closed.  She cannot reach for toys because extending the elbow is extremely difficult.  She has never played with toys.  Toys are just kept for show in front of her.
    • If I make her sit on the floor in the corner, she slides down because of the severe back extension spasticity and severe leg extension spasticity.
    • Gaatha has never been able to sleep on her back.  She always sleeps on the side with both knees flexed. A family friend and an orthopedic surgeon told us that it is because of lumbar lordosis and both hips having flexion contracture that Gaatha is unable to sleep on her back.
    • Surprisingly, at times her trunk remains warm and her arms and legs are ice cold; we are told that this is because of improved metabolism and soon the complete body temperature will be normal.
    • On 13th August 2012, for 1st time in her life, Gaatha sat without support for 4 minutes.....!!!!  It was a joy for both of us which we cannot express in words.
    • Gaatha has sleeping disorder.  She does not sleep for many many hours in the night and she never sleeps during the day but now with new exercises she has begun to takea small nap in the afternoon and at night she sleeps peacefully and she is able to sleep flat on the back as well. 
    • On 20th August, I noticed her sitting is slightly improved.
    • We find that her eye balls are getting stabilized.  Earlier she used to move her eyes a lot while focusing.
    • Gaatha is working out well. Slowly increasing time span of sitting in Buddha posture.
    • Now she keeps her fingers open when splints are tied to her elbows for better extension support.
    • On 23 August, she was sitting with one of my friends in Buddha posture, head up and listening to music on her mobile for 30 minutes at a stretch. My friend was very surprised to see that and was very happy too.
    • Frequency of jerks has significantly reduced despite discontinuation of all her medicines which she had been taking for such a long time. 
    • On 30th August, 2012 we had been to Andheri with Gaatha. We were out for almost 3 hours. Though she was making her body very tight while sitting in auto, her social response was very good. She was looking at everyone and smiling.Though we were out in the afternoon, she was not sleepy or drowsy.She enjoyed autorickshaw ride. When we got out from the auto, she was laughing.
    • Constipation is still a concern; she doesn't pass stools for 2-3 days.
    • On ball she sits in cross leg posture, but trunk is bent fully.
    • Once we had guests. They noticed lot of improvement in Gaatha. They felt that her face has changed significantly. Now she is more expressive.When she was doing ball exercises, one of the guests was calling her and she was trying to locate them.
    • At times, she tries to come forward a little in prone position.
    • On 21st September 2012, for the first time in 7 years, Gaathapassed stool consecutively for 2 days.
    • On 27 September, 2012 I took her out in auto.  Earlier she used to stiffen the body, but that day she was sitting very relaxed and comfortably.
    • Gaatha Sitting Independently
    Gaatha dog cobra
  • Oct - Nov

    • Gaatha looks fresh now; we observe that her oxygen intake has improved as her rib cage can now expand more due to reduced stiffness; she had pigeon chest, no visible movement in the rib cage and kypho-scoliotic dorsolumbar spine. This improvement has been observed after starting with 1 minute of chest pumping done every hour.
    • Gaatha’s body has become very relaxed; her body which was previously like one piece of wood can now move as individual separate parts.
    • Corner sitting is improved.  She doesn’t slide down much as before.
    • Now she does dog to cobra very well; though it is passively helped by us.
    • She is able to sustain dog position for about 4 min.
    • Her pelvis is much relaxed and touches more to the floor while in cobra posture.
    • Gaatha's behavior has significantly changed. Gaatha has become very fussy about the food.  Gaatha cries loudly for small things.She has become very stubborn.
    • Emotionally, she has become very attached to me and doesn't allow me to leave the room.  She cries even if am reading a paper or I openmy laptop and don’t pay attention to her.  In real sense she now realizes the presence of her parents being around and she getsthings done from us whatever she wishes. She never was like this before and now Gaatha has become quite demanding and only does what she wants.
    • Gaatha has started eating faster than ever before. She eats food in 20 minutes.  Earlier she used to take almost an hour for her lunch/dinner and I had to keep the television “ON” so that she eats. But now she does not need any other entertainment while eating.Now at times she even cries looking at the empty bowl after finishing her lunch/dinner. We guess her appetite is improving and she needs more food!!
    • Her head drooping has reduced.She seems to be observing things with more focus; her head neck control has developed and she can maintain the eye-to-object contact and focus more on the objectwithout the eyeball being unsteady.
    • Now Gaatha balances her trunk better on ball.
    • Now when I make her color on paper, I find her hand movement is swift (I hold her hand).  Earlier the movement was very rigid from severe elbow flexion contracture and pectoral contracture.
    • In dog to cobra, moves right leg backward. Now getting her in cobra position is little easy.
    •  Now she keeps her left hand relaxed, straight; earlier it used to be in flexion always.  Gaatha is now keeping her palms wide open.Her fingers are relaxed, not stiff as before; she can make use of her fingers to hold objects.
    • On 3rd OCT 2012, Gaatha rolled over 2-3 times on her own; we as parents were so excited to see our loved one to be moving actively.
    • On the ball, now she tries to come up while ball is moved forward; she tries to balance her trunk so that she does not fall and stay upright on the ball no matter to whichever side the ball moves. Earlier the trunk would just bend completely. What a change big gym ball exercises can do, if we know how to do, we used big ball even before but trunk did not support itself!
    • She also tries to move forward in dog position.
    • Now she passes stools every alternate day.
    • Eating and sleeping well.
    • Grinding of teeth has reduced.
    • She had got some white spots on her nails. Family doctor friend said they are due to calcium deficiency, now they have disappeared which means her calcium absorption must have improved.
    • When someone calls Gaatha and asks her to come, she takes out hand from my shoulder and tries to move towards them.
    • She is more expressive about her needs.
    • Her sitting posture is getting better.  She sits almost independently in Buddha posture; she supports the posture with her own two hands flat on the floor, elbow extended with splints.
    • When she is lying down on floor or on bed, she maintains her position on back for long time; earlier she never used to lay down on back at all.
    • When she is tired, her head drooping starts; otherwise her head holding is better.
    • Her trunk holding seems improved on ball. Earlier she used to fall within few seconds.
    • Hands are so relaxed. I can make her do NAMASTE which was never possible earlier.
    • Now whenever she sees exercise mat, she gets excited. So even I am happy that she is working out willingly.
    • On 26th Oct 2012,she could identify colors on piano.  Piano has red, yellow and blue color press buttons.
    • We are observing since few days that she goes to sleep on her own at night, without patting; this was almost impossible before. Previously I had to pat her for hours and still she wouldn’t fall asleep.
    • On 2ndNov 2012, in the afternoon when I and Gaatha were resting, Gaatha was listening to songs and I went off to sleep for some time. Generally she bothers me a lot; either she will hit me or start crying, but on that day she was very much on her own entertaining herself. I was happy as well as surprised.
    • Her knees appear to be aligned; previously they appeared to be atvery unequal height and deformed.
    • Her sitting balance with temporary splinting has improved. She sits in cross leg posture without my support for 5-8 minutes.
    • In Christ posture, I can now take her right leg on left side swiftly. Now hip is relaxed.
    • When I put her in prone, she tries to move forward. She bends her right leg and keeps left leg straight.Bowl of food is motivating her to move forward.
    • Gaatha Single Leg Cobra
    Gaatha Sitting Independently
  • Dec '12 to Jan '13

    • On December 3, 2012, at afternoon one of my close friends had come home alongwith her husband. Gaatha knows them well. When they came inside, Gaatha was lying on bed in supine and enjoying music on headphone. As soon as they came, she lifted her head and came up almost upto her shoulder to see them. In that position, she was looking on both sides. In the evening too, she did the same while I was dressing her.I had never seen her lifting her body on her own for a purpose.It was amazing.
    • When Gaatha is not exercising, we give her rattler to hold or keep a piano on her lap so when she moves her hands, buttons gets pressed and music starts. We also keep moving doll around her; Gaatha keeps tracking her movement.
    • 19 December 2012:  We would like to mention one instance; it is generally observed that Gaatha’s sleep is unstable. Small ray of light or even petty door bell sound are reasons for her sleep disturbance. To avoid this, as soon as I get up from bed, I make a point of covering her head and face with 2 pillows with small opening and she remains in that situation till finally she wakes up. But today’s incidence was stunning. Just within a minute, she threw away all the Pillows and the blanket from her face and went back to Sleep.  I kept on staring at her!!!
    • On 25thDec 2012, Gaatha could do dog to cobra 380 times with our support.
    • On 26th December 2012, after sitting in Buddha posture for almost half an hour, I left her in the same posture.  She was sitting in Buddha posture without support, without elbow splint for approx 10-12 min.
    • On 26th December 2012, in the evening, one of the kids from neighborhood came to see her. Gaatha likes her company. But then she left in just 2 min as she wanted to go down. Gaatha got upset. For the first time I saw that emotion on her face. Then I explained her that if she works out well, she will be also able to play with them very soon. I took her out for some time then.
    • On 28th December 2012, Gaatha was very much fine; no fever or any other issues despite doing dog to cobra for approx. 400 times in a day.
    • Now she is passing stools daily.
    • Spine looks straight and not scoliotic and kyphotic as before.
    • People seeing Gaatha after a month’s time or more are getting surprised looking at Gaatha. They find significant changes in Gaatha's behavior as well as understanding.
    • Now she can keep elbow straight and control her elbow movement (not allowing it to collapse) during dog to cobra.
    • Now she vocalizes a lot. She is enjoying swinging on rod.
    • After starting with rod exercises, I find her body has become very light.
    • Gaatha has become tall and it seems she has gained weight.

2013

  • Feb - April

    • Ball balancing has improved and she can maintain her trunk erect even upon moving the ball in any direction.
    • Maintaining sitting in Buddha posture has improved.  She can maintain it for around 10-12 minutes independently.
    • Gaatha sleeps well at night.  Now she doesn’t need to be patted for long hours before falling asleep as before.  Now she stretches both hands upwards when she gets up from sleep. She had never done this in the past.
    • Her hands remain open now.  No more fisting is seen.
    • On March 4, 2013, Gaatha did 450 dog cobra and 60 single leg cobra.
    • Gaatha previously had dark patches on her back, they have reduced a lot.  Her skin no longer looks yellow but is more of pinkish color due to good blood circulation.
    • On March 13, 2013 Gaatha could sit comfortably in bean bag. She sat for 45 minutes at a stretch. She sits in the bean bag and observes movement around her. She enjoys sitting in kitchen.
    • On 13 March, she took weight on hands in camel position. I was holding wrist. She was managing on her own.
    • We are not going ahead with surgery for hip dislocation as advised previously by the orthopedic surgeon because Gaatha is not crying and willing to do exercises, and we are waiting with conservative approach for the timebeing for possible future active remodeling of the bone and reduction of adductor stiffness. Orthopedic surgeon said hip may dislocate again with this severe adductor muscle tightness.

    Gaatha began to sit independently with her own hand support in April 2013; she joined us in July 2012. Her face looks more bright, skin looks clean and she looks more happy and healthy.  She was just like a log before, we were not able to bend her even passively at the elbows and the knees, now you can see how  relaxed and independently she sits.

    Gaatha sitting independently

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