Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Hi Jacki, Thanks for the welcome. WOW! I knew you said Siobhan was getting the VEPTR but I didn't know it was this soon. Good luck. You guys will be in our thoughts and prayers. We will be missing you by a week. Hopefully we will cross paths in SLC again. Siobhan is such a little angel and Ty and her had fun together. I would love to talk to you on the phone. Email me when it would be a good time and I will call you so we can catch up. Regarding the connective tissue disorder. I am sorry Siobhan has Marfans but I am glad you guys finally got a definate diagnosis. It helps to know exactly what you are dealing with. The boys have been to the genetics doctor and they have mentioned a possible connective tissue disorder but each time I ask they say if they do have one it is mild. They have never given me a name or a type. They at this time keep telling me they might have some type of syndrome. Again no definate diagnosis. We had some blood tests and all came back negative. But I will bring it up to DR. D when we go back and see what he says. Thanks. Take Care Tawney Quote Link to comment Share on other sites More sharing options...
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