Shirdesh makes further improvements
May 2nd, 2009
Hi
Ok Shirdesh now talks a little. Not in sentences though. He is learning words and is battling to make them into sentences. He understands when you tell him stuff like ” go to the kitchen baby” he gets up and walks straight to the kitchen. He now knows all the bedrooms in the house and who they belong to. My son who works and lives in Johannesburg came home over the easter weekend and left to go back to Johannesburg soon thereafter. Shirdesh did not know he had left early that morning. We all were sitting in the lounge that morning. Shirdesh walked from the lounge and straight to the entrance of his bedroom and called out his name for the first time. The room ofcourse was in darkness so he could not see clearly in the room but the amazing thing here was he was looking into the room inquisitively as if trying to see where my son is in the bedroom. Satisfied that he was not there he walks straght back into the lounge, sits on the sofa and watches the TV. Just stares at the tv. How much he is seeing on TV, we dont know.
I have 2 recent video clippings of him which are real shockers. If you want to see them you can email me. I will glady send you these. email address is jeevansingh@telkomsa.net
The first clipping – my wife holds a piece of paper in her hand in front of him. He sees it but pays no attention to it. My wife then asks him “what is this baby” He just smiles. He continues to smile and laugh and when my wife repeats her words ” what is this baby”, he looked at the piece of paper in her hand and says ” PAPER”
The 2nd clipping – I sway my body in a funny way and asks him to do the same. He sees me do this but pays no attention initially because he has a piece of paper in his hand and concentrates on this paper. I try to get his attention to imitate me and after his mother says to him ” DO BABY DO ” He sees what I am doing and belive me he actually tries to also sway his body in a funny way. I almost fainted.
“Seeing is believeing” and these 2 clippings is a must see. Again, If you want them I have got them. Email me if you want them.
I will update the blog again once I observe further constructive mprovement with Shirdesh. We still have another 7 mths to go before he levels up with his vision and we continue to observe baby Shirdesh.
I want this to be a breakthrough, not only for Shirdesh but also for the sake of all of GOD’S children out there who so desperately needs THE GIFT OF SIGHT” and my prayers are to GOD is to please make this miracle happen for their sake also.
To all those wonderful parents out there, Your child is a divine gift from GOD. Do not be saddened with their condition. Love them with all your heart,soul and mind. Hug them as much as you possiblably can. This is what GOD wants you to do. Your child will feel this love and a sense of belonging and know he/she is wanted, at the same time God will ease your pain also. Try it after you have read this note and tell me if I am wrong.
God bless
Jeevan
Entry Filed under: rop,Uncategorized
6 Comments Add your own
1. Joyce O'Keefe | May 22nd, 2009 at 7:15 pm
Hello,
My daughter was born 24 weeks 1 pound 5 ounces and has ROP.
She is legally blind! She has a detached retina in right eye and minimal vision out of left.
I would love to follow your son’s experience. I am very excited and amazed. We are hopeful after reading this our daughter will someday be able to see better. I was wondering how many treatments he had? How much did it cost? Was it painful? Did he have sid affects?
I wonder if you could help me! Thank you…Words cannot explain how I feel for you and your son and others with ROP.
2. kiran salagala | July 26th, 2009 at 2:40 pm
Hello Uncle,
Yes, your words are completely true. I saw one clipping which you have sent me and it was great. I am also planning to go to China for my baby’s treatment. I am planning this in this year end. Yes, i also would like to know about the cost of treatment, and the facilities offered by the hospital (if we have to stay in lodging in the city, how much it will cost?), type of food that we will get, any extra food materials we have to carry for baby.
Please let us know all the details. If you can give me your contact number, then i can talk to you….
My email address:salagalakiran@gmail.com
Best Regards
Kiran Salagala
+91-9673338841
3. kannan | July 29th, 2009 at 11:38 am
Hello Shirdesh Parents,
My son is 4 year old and born with Hypofibergenimia, which is a rare bleeding disorder, because of this, he had brain hemarrahges, His retina is detached and legally blind. I reallly felt very happy about your son’s successful stemcell treatment in china. I just got the confidence that one day my son Krishanth will be able to see this world. We would like to visit china for Krishanth’s treatment also. if possible, could you please provide us some details about hospital facilities in china and costof the treatment etc.
If possible, could you please send ur ph, i would like to discuss with you guys regarding your trip details.
Thank so much for updating this blog regarding shirdesh’s developmental growth.
Eagerly waiting for your reply.
Kannan
I wou
4. shirdesh | August 11th, 2009 at 5:58 pm
My phone no is +27315783404
5. shirdesh | August 11th, 2009 at 6:03 pm
sent you an email with my contact details
6. lindsay pelser | September 20th, 2009 at 2:54 pm
Hi I have been reading about your story and we also have a 2 year old son with retinal detachment in both eyes. We are also from durban but now living in Australia you are lucky the doctors there have more knowledge than the specialist in Australia there are no specialist to treat or look at this condition so we went to India and had our on operated on.
Unfortunatly the retina did not attach so we are also looking at takng our son to china.
Has your son had his catarac removed and how is he doing.
Please let me know
regards
lindsay
iaqc@bigpond.net.au
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