Anixety about Tylers Operation (long)
need some reasurance please start from the beginning my DS which is now seven months old was born with Aperts syndrome which is is a genetic defect and falls under the broad classification of craniofacial/limb anomalies.Apert syndrome is primarily characterized by specific malformations of the skull, midface, hands, and feet. The skull is prematurely fused and unable to grow normally.Apert syndrome is a result of genetic mutation. The change is in a gene on chromosome number 10 called 'Fibroblast Growth Factor Receptor 2' .This one tiny change in the FGFR2 gene results in the physical features of Apert syndrome." sorry thats the tecnical stuff to tylers condition in saying that tyler was blessed with only having a mild condition of Aperts syndrome resulting in have only two bones fused together and having small face features which people can hardly notice onless you tell them.. Any way he is having an operation this friday on his head to unfuse the bones for his brain to be able to grow. i am so scared and worried and anxious because i know he has to have the operation but im so scared of something going wrong and losing him. There are risks in this operation like many head operations and i know there only small risks and probably unlikly to happen and i know he has to have this operation we have no choice sorry but i just dont know how to handle my fear i have to be strong for him and the operation is so close to christmas i just want my baby boy to be home...
The poor little guy has been through so much already since he was born i just hope and pray for the best.. see his web page to see pictures....
Please if anyone has been through what i am about to experince i would love to hear your stories and maybe it might give me better strength and reasurance everything will be ok..
sorry its so long i just dont know who else to talk too...
