Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 Do NOT worry. I don't think anyone was " upset " . Min is a friend of mine and I think her email was just a beautiful expression of BPES and an explanation of how it can effect any child anywhere at anytime. And I totally agree with everything she said. I think the group's response to her email was just that - an agreement on something that was eloquently put. I know anytime there is something " different " about a child it is normal to try to find a reason, an explanation. But I think sometimes bleph gets " blamed " for other characteristics that the doctors cannot explain. For example, a nurse here told me she had met one other child with bleph. But that he was severely mentally impaired so the doctors, never having seen a patient with bleph before, attributed it to that. She was very surprised that Micah is such a " normal " child. But as Min said, bleph is small eyes. And depending on the type can involve POF. But other than that, there may be other things coming into play. I see this happen in the adoption community all the time. Anytime a child is having health issues, learning or behavioral problems, etc. it tends to get blamed on " adoption issues " . When in all reality, biological children can have all of the same problems. I know that institutionalized children will have a different set of challenges they need to overcome when they come home. I would recommend you read the book, " The Waiting Child: How the Faith and Love of One Orphan Saved the Life of Another " . The book does a great job of taking one child's story (a child old enough to remember her story) in a Chinese orphanage and then through adoption into an American family. I know after adopting Micah as an older child able to share his thoughts and feelings we see things in a whole new light from when we adopted our girls as infants. I think you will find this group does not " attack " or 'flame " . At least I have never seen them do so. So don't worry - if someone disagrees they say so and that is respected. We are all here for the same reason - and I am so glad we all found each other. April Eisele, Colorado, USA Wife to Jon Mommy to Mira, Micah & Misha --- " mieritz7@... " <mieritz7@...> wrote: > Yikes friends, i sure didn't mean to offend anybody. > My heart hurts, it sounds like i have. I was just > sharing what was on my heart and mind. I only asked > about ethnicity, due to that fact that i never > noticed any Asian families in photos, I love looking > at the photos, i look at them often, we have a > beautiful group. My doctor also mentioned to me that > BPES generally, (using his words,not mine) did not > effect the Asian population. But again, i am so > sorry if i offended anyone. Know that my heart, of > course, is so sensitive to all of your feelings, we > are all going through the same trials, and i have > always felt " safe " to say or ask just about anything > to you all. I consider all of you my friends, i > never would say something rude or insensitive, at > least not intentionally. But Boy, i guess i have. > hope you all forgive me for any offenses. > kk > __________________________________________ DSL – Something to write home about. Just $16.99/mo. or less. dsl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 I am always interested to hear about your family and how it was formed... There are kids who have BPES type characteristics combined with other birth defects. You would think doctors and nurses would pay more attention to things, but, I don't think they all do, when you are talking about your basic pediatrics or family practice. Every time I take Lily to the pediatrician, one of the doctors or nurses says something like, " can she see or what " or " why are her eyes so small " . I just say yes well she is like her mama. It's a big practice but I just can't believe they can't remember us, or that one of them hasn't been curious enough to Google BPES, if there were any other peds near my house, believe me, I would have switched by now. Sorry for the rant > > > Yikes friends, i sure didn't mean to offend anybody. > > My heart hurts, it sounds like i have. I was just > > sharing what was on my heart and mind. I only asked > > about ethnicity, due to that fact that i never > > noticed any Asian families in photos, I love looking > > at the photos, i look at them often, we have a > > beautiful group. My doctor also mentioned to me that > > BPES generally, (using his words,not mine) did not > > effect the Asian population. But again, i am so > > sorry if i offended anyone. Know that my heart, of > > course, is so sensitive to all of your feelings, we > > are all going through the same trials, and i have > > always felt " safe " to say or ask just about anything > > to you all. I consider all of you my friends, i > > never would say something rude or insensitive, at > > least not intentionally. But Boy, i guess i have. > > hope you all forgive me for any offenses. > > kk > > > > > > __________________________________________ > DSL – Something to write home about. > Just $16.99/mo. or less. > dsl. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Hi all, Beth, thanks once again for your thoughts. As others have mentioned, it is always so great to read your postings. Ok, since you shared some of your rants, here is my rant...( from North Carolina here). I recently went to the doctor the see about any repair needed for my left eye that seems to be drooping as of late (since my sugery was completed 25 years ago) and I wanted to make sure there was no follow up necessary. The doctor proceeded to tell me that he could see the difference in my left eye but stated that the invasiveness of the surgery to repair it would not be worth it for the improvement I would get, if any. I was fine with that, I only wanted to make sure. But then he went on to say, "Look, you are an attractive woman who probably notices a slight assymetry in your eyes and you would like to have it corrected, but most people wouldn't notice it." LIKE I WOULD CARE ABOUT MY APPEARANCE THAT MUCH NOW AFTER LIVING WITH BPES FOR 31 YEARS. It made me so angry that he would think that I was seeking his opinion strictly for cosmetic reasons and that I would be that vain. ly I am tired of holding my eyelid up with my finger at the end of the day after my eyebrow muscles get too tired to hold it up. If I was that concerned about my appearance, I think I would have gone in to have additional surgery when I was getting teasted EVERY DAY of the first grade! Anyway, that is my rant. I'm sorry for dumping it on all of you. It's just that sometimes it's so hard to get people, especially doctors to understand that it isn't just cosmetic. The fact is, I can't see as well as other people because my eyelids hang down, and my eyebrows get tired. Sorry to go on. HAPPY NEW YEAR!!!! bethgordon03 <bethgordon03@...> wrote: I am always interested to hear about your family and how it was formed...There are kids who have BPES type characteristics combined with other birth defects. You would think doctors and nurses would pay more attention to things, but, I don't think they all do, when you are talking about your basic pediatrics or family practice. Every time I take Lily to the pediatrician, one of the doctors or nurses says something like, "can she see or what" or "why are her eyes so small". I just say yes well she is like her mama. It's a big practice but I just can't believe they can't remember us, or that one of them hasn't been curious enough to Google BPES, if there were any other peds near my house, believe me, I would have switched by now. Sorry for the rant> > > Yikes friends, i sure didn't mean to offend anybody.> > My heart hurts, it sounds like i have. I was just> > sharing what was on my heart and mind. I only asked> > about ethnicity, due to that fact that i never> > noticed any Asian families in photos, I love looking> > at the photos, i look at them often, we have a> > beautiful group. My doctor also mentioned to me that> > BPES generally, (using his words,not mine) did not> > effect the Asian population. But again, i am so> > sorry if i offended anyone. Know that my heart, of> > course, is so sensitive to all of your feelings, we> > are all going through the same trials, and i have> > always felt "safe" to say or ask just about anything> > to you all. I consider all of you my friends, i> > never would say something rude or insensitive, at> > least not intentionally. But Boy, i guess i have.> > hope you all forgive me for any offenses.> > kk > > > > > > __________________________________________ > DSL – Something to write home about. > Just $16.99/mo. or less. > dsl.> DSL Something to write home about. Just $16.99/mo. or less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 That's interesting, because my rignt eye has dropped and my doctor said basically the same thing. I am tired, I get facials sometimes and always the facialist says, your poor temples,your poor facial muscles. It made me feel badly for what my daughter has gone through, if the surgery is so invasive. I am sorry you had this bad experience, it makes me feel confused. > > > > > Yikes friends, i sure didn't mean to offend anybody. > > > My heart hurts, it sounds like i have. I was just > > > sharing what was on my heart and mind. I only asked > > > about ethnicity, due to that fact that i never > > > noticed any Asian families in photos, I love looking > > > at the photos, i look at them often, we have a > > > beautiful group. My doctor also mentioned to me that > > > BPES generally, (using his words,not mine) did not > > > effect the Asian population. But again, i am so > > > sorry if i offended anyone. Know that my heart, of > > > course, is so sensitive to all of your feelings, we > > > are all going through the same trials, and i have > > > always felt " safe " to say or ask just about anything > > > to you all. I consider all of you my friends, i > > > never would say something rude or insensitive, at > > > least not intentionally. But Boy, i guess i have. > > > hope you all forgive me for any offenses. > > > kk > > > > > > > > > > > __________________________________________ > > DSL – Something to write home about. > > Just $16.99/mo. or less. > > dsl. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 hi...I went to the dr. last week b/c my right eye lid was dropping more than b4. I have surgery scheduled for March 8th. They are going to be able to raise my lid higher and besides the fact that it will be noticable for an appearance point, it will be higher so i would be able to see things on a side view more. (hopefully!) my dr. explained it to me as since i wasn't a natural muscle (its a muscle from my leg, surgery from about 10 yrs ago and a sling that's about 13 yrs old) that sometimes it just needs to be tighten b/c it isn't as tight as it was b/c of the use of raising my eyelids. hope all is well w/ everyone:) -stayce > > > > Hi all, > > Beth, thanks once again for your thoughts. As others have > mentioned, it is always so great to read your postings. Ok, since > you shared some of your rants, here is my rant...( from > North Carolina here). > > > > I recently went to the doctor the see about any repair needed > for my left eye that seems to be drooping as of late (since my > sugery was completed 25 years ago) and I wanted to make sure there > was no follow up necessary. The doctor proceeded to tell me that he > could see the difference in my left eye but stated that the > invasiveness of the surgery to repair it would not be worth it for > the improvement I would get, if any. I was fine with that, I only > wanted to make sure. But then he went on to say, " Look, you are an > attractive woman who probably notices a slight assymetry in your > eyes and you would like to have it corrected, but most people > wouldn't notice it. " LIKE I WOULD CARE ABOUT MY APPEARANCE THAT > MUCH NOW AFTER LIVING WITH BPES FOR 31 YEARS. It made me so angry > that he would think that I was seeking his opinion strictly for > cosmetic reasons and that I would be that vain. ly I am tired > of holding my eyelid up with my finger at the end of the day after > my eyebrow > > muscles get too tired to hold it up. If I was that concerned > about my appearance, I think I would have gone in to have additional > surgery when I was getting teasted EVERY DAY of the first grade! > > > > Anyway, that is my rant. I'm sorry for dumping it on all of > you. It's just that sometimes it's so hard to get people, > especially doctors to understand that it isn't just cosmetic. The > fact is, I can't see as well as other people because my eyelids hang > down, and my eyebrows get tired. > > > > Sorry to go on. HAPPY NEW YEAR!!!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 The problem for me is, I never have had slings put in, so I would have to have new ones, from scratch. Of course it is important to see first and foremost, but cosmetic is important, too. I am not going to enlist in the beauty pageant circuits, but I also think I deserve symmetrical- looking eyes. It's crazy to have to think of all this stuff. I wish you luck and a speedy recovery in March, thanks for your message > > > > > > Hi all, > > > Beth, thanks once again for your thoughts. As others have > > mentioned, it is always so great to read your postings. Ok, since > > you shared some of your rants, here is my rant...( from > > North Carolina here). > > > > > > I recently went to the doctor the see about any repair needed > > for my left eye that seems to be drooping as of late (since my > > sugery was completed 25 years ago) and I wanted to make sure there > > was no follow up necessary. The doctor proceeded to tell me that > he > > could see the difference in my left eye but stated that the > > invasiveness of the surgery to repair it would not be worth it for > > the improvement I would get, if any. I was fine with that, I only > > wanted to make sure. But then he went on to say, " Look, you are > an > > attractive woman who probably notices a slight assymetry in your > > eyes and you would like to have it corrected, but most people > > wouldn't notice it. " LIKE I WOULD CARE ABOUT MY APPEARANCE THAT > > MUCH NOW AFTER LIVING WITH BPES FOR 31 YEARS. It made me so angry > > that he would think that I was seeking his opinion strictly for > > cosmetic reasons and that I would be that vain. ly I am > tired > > of holding my eyelid up with my finger at the end of the day after > > my eyebrow > > > muscles get too tired to hold it up. If I was that concerned > > about my appearance, I think I would have gone in to have > additional > > surgery when I was getting teasted EVERY DAY of the first grade! > > > > > > Anyway, that is my rant. I'm sorry for dumping it on all of > > you. It's just that sometimes it's so hard to get people, > > especially doctors to understand that it isn't just cosmetic. The > > fact is, I can't see as well as other people because my eyelids > hang > > down, and my eyebrows get tired. > > > > > > Sorry to go on. HAPPY NEW YEAR!!!! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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