Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 , , n, Barbara please keep the mails coming they are going to be of immense help to my son Amrit and his wife Poonam, your experiences will be a guiding light for us, leading us through the first difficult year, yes my children are alone in a new place and hardly know many people, they just moved in April, we are living miles away from them and feeling helpless, all that we can do is to resort to prayers, and my children could do with all the moral and other support they can get from people around them. Yesterday Aman had the surgery for his G Tube so that they can bring him home, it is a saving grace that he doesnt need any other surgical correction as of now. My children have been blessed with a very positive attitude, this is what Amrit wrote to me< Doctors say he is stable and can start feeding in 1-2 days time. He has done so well, and is a very strong boy. After coming out of the operating room, he was awake for a while, and did not cry at all. We put the soother in his mouth, and he sucked on it vigorously, enjoying it, as if nothing had happened. As his father, I fret at the thought of getting my wisdom tooth extracted, and this boy was unfazed. Hats off to him, I learn something from him everyday...he is my master. I am proud of my son, and he will be a great man someday!> From all the kind letters we have been receiving I can only say God gives special children to special people.lots of questions are now racing in our minds as to what the future holds for Aman, he has been diagnosed as having laryngo malaise which is a condition they say will get fine as he grows but at the same time he has slight palsy on his right side so we wonder how long it will take for him to get to oral feeding. He has zero testosterone and undescended testicles as the pituitary gland is not sending the right signals, how long will it be before all this is resolved? His hearing is impaired the right ear more than the left, he has colobama wherein he has no vision to the extent of 25 % he has slight palsy on the right side of his face. His aorta to the heart is narrow. But he is gaining weight in the normal way and is now 7 pounds as compared to his birth weight of 5.5 pounds. For all these diagnosis he was airlifted to Vancouver Hospital. Please anyone knowing about these conditions send us all the information Barbara thanks for all the encouraging support, Aman will be on the infant development program and attended to all the professionals he needs at this time, and yes we will not let the doctors predictions become our reality, its true since the conditions vary, every child is different, Michele it was wonderful reading about your experience about tactile stimulation, a positive attitude and accepting Gods Will goes a long way in life, the advice of your pastor about asking for help is wonderful, Thanks everyone once again and keep the mails coming. Pushpa grandmother to Aman, 7 weeks old, Amrit my son his father and Poonam his mother. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 Pushpa-- From a grandmother's experience, it is very hard to watch your children go throught this and watch your children worry about their child and your grandchild. My grandson, Josh, is 18 months old and a cHARGEr. From my experience, the first year was the hardest. He is now progressing very much and is trying to walk. He is still not oral fed, still fed with the G-tube. In fact, today he took a can to his mom to be fed!!! He tries to assist with the feedings now. It does get better. But it may seem, at times, that it will not. Josh's biggest problems is ear infections which cause alot of drainage. From one grandmother to another---congratulations and good wishes Iris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2001 Report Share Posted December 18, 2001 Iris, it was good to hear from another grandmother, but I still havent seen my first grandson Aman, as the children are in Canada and Iam in India, so am trying to help them get information and guidance in whatever way I can, Pushpa Quote Link to comment Share on other sites More sharing options...
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