Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 I have a 9 year old son with PMG. He was diagnosed at 4 months old. is non-verbal, non-abulatory, feeding tube, nissen fundoplication and controlled seizures. vision and hearing appear to be perfect. Up until turned 2, he held his breath until he turned blue. He now sleeps through the night with the help of Chloral Hydrate. receives PT,Speech and consultation OT at school. He smiles each and every time you look at him. is an Angel to us and everyone who gets to know him. Take each day one at a time. Sharon T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 is 9 as well Sharon. I just posted you with questions on the Nissen Fundoplication?? is also non verbal, non ambulatory, feeding tube,controlled seizures (mostly) with exceptional vision and normal hearing. His biggest obstacles have been feeding problems, hip surgery on both hips, seizure control, and loss of swallow function/aspiration and respiratory problems. He also smiles every time you look at him, a warm, beautiful full face smile with this little sparkle thing in his eyes like he is flirting with you. My darling... that one, he is so darn precious...and snuggles too. Hasselberger, Sandy Hook CT...Mom to , age 9 bi lateral diffuse PMG... > > I have a 9 year old son with PMG. He was diagnosed at 4 months old. is non-verbal, non-abulatory, feeding tube, nissen fundoplication and controlled seizures. vision and hearing appear to be perfect. Up until turned 2, he held his breath until he turned blue. He now sleeps through the night with the help of Chloral Hydrate. receives PT,Speech and consultation OT at school. He smiles each and every time you look at him. is an Angel to us and everyone who gets to know him. Take each day one at a time. > Sharon T. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 Do you have oxygen at home for him? doesnt hold his breath, but during intense pain crying he stops breathing consistently...and because of the amount of times he has de-satted... in the hospital, they wanted us to keep the oxygen machine near him as a precaution. > > I have a 9 year old son with PMG. He was diagnosed at 4 months old. is non-verbal, non-abulatory, feeding tube, nissen fundoplication and controlled seizures. vision and hearing appear to be perfect. Up until turned 2, he held his breath until he turned blue. He now sleeps through the night with the help of Chloral Hydrate. receives PT,Speech and consultation OT at school. He smiles each and every time you look at him. is an Angel to us and everyone who gets to know him. Take each day one at a time. > Sharon T. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 wrote: is 9 as well Sharon. I just posted you with questions on the Nissen Fundoplication?? is also non verbal, non ambulatory, feeding tube,controlled seizures (mostly) with exceptional vision and normal hearing. His biggest obstacles have been feeding problems, hip surgery on both hips, seizure control, and loss of swallow function/aspiration and respiratory problems. He also smiles every time you look at him, a warm, beautiful full face smile with this little sparkle thing in his eyes like he is flirting with you. My darling... that one, he is so darn precious...and snuggles too. Hasselberger, Sandy Hook CT...Mom to , age 9 bi lateral diffuse PMG... > > I have a 9 year old son with PMG. He was diagnosed at 4 months old. is non-verbal, non-abulatory, feeding tube, nissen fundoplication and controlled seizures. vision and hearing appear to be perfect. Up until turned 2, he held his breath until he turned blue. He now sleeps through the night with the help of Chloral Hydrate. receives PT,Speech and consultation OT at school. He smiles each and every time you look at him. is an Angel to us and everyone who gets to know him. Take each day one at a time. > Sharon T. > > > Quote Link to comment Share on other sites More sharing options...
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