Tuesday, April 04, 2006
DiGeorge Test
Dr. McOmber just called. He cannot find in Evan's files if he was ever tested for DiGeorge. He apologized saying that he had assumed it had already been done as he tests his patients upon diagnosis with Tetralogy and had always figured that our old office had already done the testing. He is going to look into it more and see if the file is at the hospital or not, says he will be surprised if he was never tested as it is so commonly linked with Tetralogy. He said that Evan is smart and doing well however, it is a possibility, and that we will wait for the results and not to worry until we are told he has it. Also to remember that a diagnosis doesn't change the fact that Evan is doing exceptionally well. He said that DiGeorge or CHARGE is not a syndrome that progressively gets worse although signs sometimes show once school starts like, problems with math, etc. I guess we'll just have to wait. Why can't next Wed. just be over with already? Sometimes I think the waiting kills you, once it is over with you can deal with the results but the waiting seems like the game we have been playing since Evan's birth. You hate to wish time away because he is so precious right here and now but, always seems like we are waiting for the next test or procedure. We just love our little boy and want the very best for him. We need strength to be thankful for our circumstances and realize that things could be much worse, which I know they could.
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Our daughter,Sophia, was born with TOF w/pulmonary trunk atresia (pulmonary artery is missing the connection to the ventricle). She also has Digeorge Syndrome. She is 17 months old and has had two surgeries. Her VSD has not been repaired. She is scheduled for a cath and possible balloon angio this month. I just found your blog and would like to link to it from mine. Do you mind?
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