Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 Hi. Anyone there remember me? I've changed my email address, so maybe you won't recognise me, and I haven't dropped in for many a long month. But I've just spent a happy couple of hours reading through the more recent posts. It's good to see so many familiar names, and to recognise again the honesty and courage that make this list so special. I haven't anything particular to say, except hello. I'm doing OK, as far as I can tell - still doing The Work in this quiet corner of West London. I find myself hoping the world isn't really so confused that it needs to have a war - especially since no-one seems to have asked my permission... And it's inspiring to find a place, even if only in cyberspace, where people live in peace and goodwill, and resolve their differences in a loving and civilised way. Love to all, Katharine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 'Hi. Anyone there remember me? ' sweetheart.....how can you ask!!!!! I remember bawling one morning when you said you were leaving us. Great to hear from you. How's the writing going... or not? Please pop in as often as you're moved. Love, Margaret P. S. In passing ...about the ice-cream enlightenment thing...I'm wearing a T-shirt right now that has a picture of an ice-cream cone with Reality Rules sprawled beside it. I really like the Reality Is Always Right ..of this morning. > Hi. Anyone there remember me? I've changed my email address, so maybe you > won't recognise me, and I haven't dropped in for many a long month. But > I've just spent a happy couple of hours reading through the more recent > posts. It's good to see so many familiar names, and to recognise again the > honesty and courage that make this list so special. > > I haven't anything particular to say, except hello. I'm doing OK, as far as > I can tell - still doing The Work in this quiet corner of West London. > > I find myself hoping the world isn't really so confused that it needs to > have a war - especially since no-one seems to have asked my permission... > And it's inspiring to find a place, even if only in cyberspace, where people > live in peace and goodwill, and resolve their differences in a loving and > civilised way. > > Love to all, > > Katharine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Hi Carole...nice to have you with us. You have found a great group. ~ & Alina, & Jenna (19 months with PMG) Just to say hello Hi everyone, My name is Carole, I live in Hampshire, England. My grandson, , was born Oct 2003 and has had seizures since birth. In November, after all the tests under the sun, he was finally diagnosed with BPP. So far, his seizures are partially under control, which is a huge improvement from those early days when at times he was having them almost continually. He was tube fed for weeks, but now he can feed from a bottle with little trouble, though he still has the tube for medication. He's a beautiful little boy, who seems to be making slow progress. I'm not sure just how rare the condition is, and we know that it's impossible to say what the future holds, but I'm glad to have found this group and hope other's experiences will help us. Best wishes, Carole ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Hello Carole, and welcome to the group, My name is Harriet and I have a soon to be 3 yr. old with CBPS. He has other issues as well. He is beginning to crawl and is doing pretty well overall. I hope to hear more from you and your grandson. Harriet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Hello Harriet, I'm still getting used to all the abbreviations used.....CBPP, BPP, CBPS....so I'm assuming that your son, like , has been diagnosed with congential bilateral perisylvian syndrome, but please correct me if I'm wrong, which I'm also assuming is the same as congential bilateral perisylvian polymicrogyria.....can't they just use one abbreviation?! What other issues does your son have? I'm glad to hear that he's doing well. It's early days for us, so we will just have to wait and see, but the future seems so far away at the moment and it's hard to envisage anything other than what we are experiencing today. Thanks for answering, best wishes, Carole > Hello Carole, and welcome to the group, > My name is Harriet and I have a soon to be 3 yr. old with CBPS. He has other issues as well. He is beginning to crawl and is doing pretty well overall. I hope to hear more from you and your grandson. > > Harriet > > > Quote Link to comment Share on other sites More sharing options...
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