We had some relatives come over to Bangalore this weekend. They were my wife's uncle's family. These were the first visitors to our new home in Bangalore. Sayan also enjoyed the weekend due to the tiny visitors. Uncle has 3 kids. Sayan was happy to play with them. In fact Sayan loves it when there are more people in the house.
Saturday we went to the HAL (Hindustan Aeronautics Limited) heritage museum. The kids loved seeing the planes. Sayan loves planes and cars. Amongst the many toys he has, the maximum would be planes and cars. There are many planes of the past on display there. He gets more excited when going closer to them.
Went to Lalbagh gardens. Spent the evening. Sayan did lie down on the grass lawns. This is the first time. Earlier attempts used to make him cry. He enjoyed rolling on the grass. Later went to some of the many malls.
Sunday we went off to Wonderla Amusement Park. Tried to take Sayan to the many rides, but he was scared. The only ride he sat in was the Merry Go Round ( carrousel). He in fact wanted to sit in the same ride many times. He loved to sit on the horses. He infact sat on the horses 3 times and was still asking for more rides. It was so nice to see him enjoy the ride. I had to go in the ride myself to catch hold of him (lest he hurt himself).
But one thing I noticed is how people don't at all care. When I took him in the ride more than once, I could see that some other parents were unhappy. I do not blame them, but I think for children in general, people should be careful. I did not want to explain Sayan's condition, so I did not care. In fact in some of the crowded areas, I have to be extremely careful, else someone could mistakenly bump on to us.
Monday, May 28, 2007
Thursday, May 03, 2007
What is Osteogenesis Imperfecta?
Osteogenesis Imperfecta (OI)-- commonly known as the "brittle bone" disorder-- is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. A person with OI may break a rib while coughing or a leg by rolling over in their sleep. OI has been documented in all ethnic groups, and affects a person throughout their lifetime ref: www.oif.org
Many of you may not be aware as to my sons condition. He has been diagnosed with OI Type I. This is indeed a very rare genetic disorder. He is prone to fractures. He has already has 3 major fractures.
He was first diagnosed when he cried out in pain when he was 7 months old. The diagnosis was very difficult and took a very long time. After a lot of tests at Manipal Hospital, Manipal, it was finally concluded that he suffers from Osteogenesis Imperfecta Type 1. This was in the month of Nov 2005 when he was also diagnosed with having Septic Arthritis in the right hip joint. He was admitted and medicines cured that.
Doctors from the Department of Pediatrics at Manipal Hospital, Manipal advised various options to help my son. Department of Pediatrics, strongly suggested to go in for Bisphosphonate treatment. This would be a regular dose of Pamidronate every 4 months. We took the advice and guidance of many other doctors in Mangalore and Bangalore. We finally decided to go in for a Bisphosphonate (Pamidronate) in April ’06. This is now continuing with injections already given in the months of April ’06. Aug ’06, Dec ’06 and April '07. The next one is due in August ’07. For the injections he is admitted in the hospital for at least 3 days as it does have some side effects.
Other than this he has had major fractures. These fractures were not due to a fall. This just happened when he either exerted or hit himself. One was to the left hand (Left Humerus Dec ’06), Right Thigh (Right Femur Dec ’06), Right Leg close to hip joint ( Left Femur March ’07). For each of these fractures he was placed in a cast. For the last 2 fractures he has been in a cast from chest to toe.
He is otherwise a very smart child and just celebrated his 2nd birthday. He was all excited on his birthday (but in a cast). He has grown normally with no other known deformities. He is also much active in his other activities with good intellect, good speech. He is presently trying to walk on his own.
We have been a very careful with him and not exerting him physically. Doctors advise that he would learn to take care of himself after the age of 4 years.
Many of you may not be aware as to my sons condition. He has been diagnosed with OI Type I. This is indeed a very rare genetic disorder. He is prone to fractures. He has already has 3 major fractures.
He was first diagnosed when he cried out in pain when he was 7 months old. The diagnosis was very difficult and took a very long time. After a lot of tests at Manipal Hospital, Manipal, it was finally concluded that he suffers from Osteogenesis Imperfecta Type 1. This was in the month of Nov 2005 when he was also diagnosed with having Septic Arthritis in the right hip joint. He was admitted and medicines cured that.
Doctors from the Department of Pediatrics at Manipal Hospital, Manipal advised various options to help my son. Department of Pediatrics, strongly suggested to go in for Bisphosphonate treatment. This would be a regular dose of Pamidronate every 4 months. We took the advice and guidance of many other doctors in Mangalore and Bangalore. We finally decided to go in for a Bisphosphonate (Pamidronate) in April ’06. This is now continuing with injections already given in the months of April ’06. Aug ’06, Dec ’06 and April '07. The next one is due in August ’07. For the injections he is admitted in the hospital for at least 3 days as it does have some side effects.
Other than this he has had major fractures. These fractures were not due to a fall. This just happened when he either exerted or hit himself. One was to the left hand (Left Humerus Dec ’06), Right Thigh (Right Femur Dec ’06), Right Leg close to hip joint ( Left Femur March ’07). For each of these fractures he was placed in a cast. For the last 2 fractures he has been in a cast from chest to toe.
He is otherwise a very smart child and just celebrated his 2nd birthday. He was all excited on his birthday (but in a cast). He has grown normally with no other known deformities. He is also much active in his other activities with good intellect, good speech. He is presently trying to walk on his own.
We have been a very careful with him and not exerting him physically. Doctors advise that he would learn to take care of himself after the age of 4 years.
Saturday, April 28, 2007
Moved In after much delay
Finally.. I have moved into my new house. There were delays after delay. First it was the hospitalization of my son for his fracture in December. I thought I would move in during the Christmas holidays. But sons situation was bad... he had to be hospitalized for his quarterly injections. But then there was some complications with his right leg. An earlier fracture had not healed properly and had deformed.
Doctors advised to put him on anesthesia and then re break the healed fracture so that it joins and fuses properly. When administering the anesthesia we had a hell of a nightmare as he behaved absolutely mad. We were all very scared. Till he recovered back it was a very difficult situation. After 4 weeks his cast was removed and his fracture did fuse properly.
Next delay was from the builder. The final completion of the apartment was delayed. The interior furniture also took some more time. Then in the month of March when we were just about to move into the house...son had another fracture on his left thigh. This was not as serious as the earlier fracture but since it was close to the pelvic joint.. doctors advised a cast again. Just 2 weeks back the cast was removed and the fracture has healed fine.
Now finally I have moved into my new house in Bangalore. Still have not been able to set up everything.. will take some more time. My wife and son would join me next week and I hope everything would be set up by then.
Doctors advised to put him on anesthesia and then re break the healed fracture so that it joins and fuses properly. When administering the anesthesia we had a hell of a nightmare as he behaved absolutely mad. We were all very scared. Till he recovered back it was a very difficult situation. After 4 weeks his cast was removed and his fracture did fuse properly.
Next delay was from the builder. The final completion of the apartment was delayed. The interior furniture also took some more time. Then in the month of March when we were just about to move into the house...son had another fracture on his left thigh. This was not as serious as the earlier fracture but since it was close to the pelvic joint.. doctors advised a cast again. Just 2 weeks back the cast was removed and the fracture has healed fine.
Now finally I have moved into my new house in Bangalore. Still have not been able to set up everything.. will take some more time. My wife and son would join me next week and I hope everything would be set up by then.
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