Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 Don't tone down your excitement whatsoever!!!!!!!! you are more than welcome to jump and say "yippeee"...... thats how i felt... by the way my name is tonikka and my son is lynden who is now 9, he had his 1st surgery at 6 weeks old! welcome to the grouptonikkaedmonton alberta CANADAOn 11-Mar-07, at 4:28 AM, macster74 wrote:Thanks for the welcome and thanks for responding. I am still getting over my excitement at finding this group. It really is great to know that others are experiencing similar things to us and I dont feel like we are the only ones anymore! It just seems amazing because for the past two years we have had to constantly explain Jessie's BPES to everyone we meet, as no-one seems to have ever come across it. I really feel connected now! For those of you that are older members, I guess this is 'old news' so I will try and tone down my excitement!! - Just really glad to be here! Tonikka & Chrischeck out our blogwww.nottynurse.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 My daughter just received a follow up report from 's (her Son) last visit to his Neurologist. BPEI was noted as a possible diagnosis. The first thing I did was go online to see what I could find out about it. Everything seems to be in medical terms and I don't really understand. Can you refer me to a site that a regular person can understand or am I there? Do I just start asking questions, like how long did it take to diagnose it? Were there other issues besides the eyes? has been labeled as globally developmentally delayed. When he was born he his eyes were recessed and wouldn't open, even when the doctor tried to force them. After a few days they opened and as time went by, his eyes were less and less recessed, but it's always noted that he has set back eyes, as well as small eye openings, minimal eyelashes. He has other issues but I'm not sure what all could relate to the syndrome and what may be something else. I'm happy to find this site and hope to learn more about 's health issues. Thank you... > > > Thanks for the welcome and thanks for responding. I am still getting > > over my excitement at finding this group. It really is great to know > > that others are experiencing similar things to us and I dont feel like > > we are the only ones anymore! It just seems amazing because for the > > past two years we have had to constantly explain Jessie's BPES to > > everyone we meet, as no-one seems to have ever come across it. I > > really feel connected now! For those of you that are older members, I > > guess this is 'old news' so I will try and tone down my excitement!! - > > Just really glad to be here! > > > > > > > > > Tonikka & Chris > check out our blog > www.nottynurse.blogspot.com > > >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 I am very new to this so again all I have to offer is our own story. I'm not sure how old is, my son is 5 mos and when we got referred to an eye specialist it took him about 20 minutes to diagnose it. Some cases are more severe than others. This seems to be the only health issue- he's developing at a normal rate. However, at this early age it is hard to say for sure. I have not found many sites that are extremely helpful, I've just read everything I can find and try to make sense of it all. Talking here with people who understand it has been most helpful for me. Best wishes, > > > > > Thanks for the welcome and thanks for responding. I am still > getting > > > over my excitement at finding this group. It really is great to > know > > > that others are experiencing similar things to us and I dont > feel like > > > we are the only ones anymore! It just seems amazing because for > the > > > past two years we have had to constantly explain Jessie's BPES to > > > everyone we meet, as no-one seems to have ever come across it. I > > > really feel connected now! For those of you that are older > members, I > > > guess this is 'old news' so I will try and tone down my > excitement!! - > > > Just really glad to be here! > > > > > > > > > > > > > > > Tonikka & Chris > > check out our blog > > www.nottynurse.blogspot.com > > > > > >  > > > Quote Link to comment Share on other sites More sharing options...
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