Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 Beth, I can't believe that that mother didn't do anything to correct her child....I had a similar problem when my teenage daughter came home from the hospital from having chemo treatments...She refused to go to school because some of the kids would tease her about being bald....It was a rough time, but we made it thru it and she loves school. Her hair is growing very quick, but she still keeps a bandanda on it. She now realizes that it doesn't matter what kids say....she's happy on the inside and I tell her all the time how beautiful she is as a person. I haven't had anyone say anything to me about with the BPES, but her case is so mild that it's hard to tell. The doc said as she grows older and her eyes don't develop, we will see it more. To me she is perfect as are all these kids and adults I have seen on the website... If you are a church member...you should ind a babysitter from thier...teenagers are always eager for money!!! And you would feel more comfortable than leaving Lily with a woman who allows her child to poke at your daughter!!! Blessings, amy West Mifflin, PA > > > > Hello All, > > > > I have been browsing this site for a little over a month now. > > > > Finding all of you has been overwhelming for me. Until I met > > > Gwen's > > > > Mother Pam in June I felt very alone with my son 's BPES. > > She > > > > is the one who told me about this web site. It has helped me > to > > > see > > > > some of the pictures and read some of the stories. Thank you > > all. > > > > My son is 2 years old. He is the 1st person in our > family > > > with > > > > BPES. He had Frontalis Sling Surgery when he was 5 months > old. > > > Our > > > > Oculoplastic Surgeon, Iliff, from s Hopkins U > > > Hospital > > > > in Baltimore MD, used a temporary material for his slings > > because > > > of > > > > his age. They should last until he is around 3-5 years old at > > > > which time he will have a more permanent material (Fasha) > > > > (spelling??) put in as well as a bit more plastic surgery at > > that > > > > time. We have decided thus far to take a wait and see > approach > > > with > > > > . We will likely let most surgery wait until he is more > > > > physically developed. > > > > I do have one question. Is there anyone out there who has > BPES > > > who > > > > has had a child without BPES? > > > > I look forward to being part of this site. I posted my son's > > > photo > > > > to share with you. > > > > Thank You again. > > > > God Bless all of you, > > > > Beth, 's Mommy > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2005 Report Share Posted July 29, 2005 Thanks for the messages, I appreciate your kindness. I work, I need daycare. I am a teacher and going back to work soon. I think I finally found someone good, another teacher who is running a licensed home daycare while her kids are small. Lily visited yesterday and had fun. Totally different than the other place we visited. > > > > > Hello All, > > > > > I have been browsing this site for a little over a month > now. > > > > > Finding all of you has been overwhelming for me. Until I > met > > > > Gwen's > > > > > Mother Pam in June I felt very alone with my son 's > BPES. > > > She > > > > > is the one who told me about this web site. It has helped > me > > to > > > > see > > > > > some of the pictures and read some of the stories. Thank > you > > > all. > > > > > My son is 2 years old. He is the 1st person in our > > family > > > > with > > > > > BPES. He had Frontalis Sling Surgery when he was 5 months > > old. > > > > Our > > > > > Oculoplastic Surgeon, Iliff, from s Hopkins U > > > > Hospital > > > > > in Baltimore MD, used a temporary material for his slings > > > because > > > > of > > > > > his age. They should last until he is around 3-5 years old > at > > > > > which time he will have a more permanent material (Fasha) > > > > > (spelling??) put in as well as a bit more plastic surgery at > > > that > > > > > time. We have decided thus far to take a wait and see > > approach > > > > with > > > > > . We will likely let most surgery wait until he is more > > > > > physically developed. > > > > > I do have one question. Is there anyone out there who has > > BPES > > > > who > > > > > has had a child without BPES? > > > > > I look forward to being part of this site. I posted my > son's > > > > photo > > > > > to share with you. > > > > > Thank You again. > > > > > God Bless all of you, > > > > > Beth, 's Mommy > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2005 Report Share Posted July 29, 2005 I just read this part of the post! I am so sorry about your little one's eye! Poor baby! Hugs, April --- bethgordon03 <bethgordon03@...> wrote: > Thanks for the messages, I appreciate your kindness. > > I work, I need daycare. I am a teacher and going > back to work soon. > I think I finally found someone good, another > teacher who is running > a licensed home daycare while her kids are small. > Lily visited > yesterday and had fun. Totally different than the > other place we > visited. > > > > > > Dear Beth, > > > > Wow. > > > > You have given me much to think about. I > suppose I know what > > you > > > are talking about everyone looking alike in the > 70s. I think we > > are > > > about the same age. Also, I agree children are > more tolerant of > > > differences now days than they were when your > father grew up or > > even > > > when we grew up. You make so much sense. > > > > Yes, Dr. Iliff is nice. He seems to care > about people. He is > > > thoughtful, quiet and gentle. He even looks > that way, kind of a > > > willowy scientist type. According to the > surgery staff his > > > concentration is unparalleled while operating. > > > > We were overwhelmed. was 4 months old > when we went to > see > > > Dr. Iliff. I was heartbroken and confused. We > did not > understand > > > Bleph at all. Dr. Iliff was the 1st Dr. we saw > who took the > time > > to > > > explain Bleph to us. We left his office feeling > like it was the > > > only good medical experience we had had in 4 > months with the > > > exception of 's healthy birth. He at first > was so quiet > that > > I > > > was thinking " oh no here we go again another > pompous jerk who > > won't > > > take time for us " but, after he looked over > very carefully > he > > > turned to us, smiled, and didn't stop talking > for about 5 > > minutes. > > > Then he took a lot of time to answer all of our > awkward > questions > > > and told us stories to help us accept and > understand. Sometimes > > he > > > is all business but I think that is because he > is so busy. I > > > consider him very kind and gentle. > > > > To answer your question about another baby > with the chances of > > > bleph. I can only say I would not change > anything I have for > > > anything different. It sounds like you want to > have more > children > > > so you should. You took the chance the 1st time > and you wound > up > > > with a wonderful child who will grow up to be as > brave and > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2005 Report Share Posted July 30, 2005 Beth, glad to hear you found someone new and that Lily had fun...Atleast now you concentrate on working knowing she is happy!!! blessings, amy West Mifflin, PA > > > > > Dear Beth, > > > > > Wow. > > > > > You have given me much to think about. I > > suppose I know what > > > you > > > > are talking about everyone looking alike in the > > 70s. I think we > > > are > > > > about the same age. Also, I agree children are > > more tolerant of > > > > differences now days than they were when your > > father grew up or > > > even > > > > when we grew up. You make so much sense. > > > > > Yes, Dr. Iliff is nice. He seems to care > > about people. He is > > > > thoughtful, quiet and gentle. He even looks > > that way, kind of a > > > > willowy scientist type. According to the > > surgery staff his > > > > concentration is unparalleled while operating. > > > > > We were overwhelmed. was 4 months old > > when we went to > > see > > > > Dr. Iliff. I was heartbroken and confused. We > > did not > > understand > > > > Bleph at all. Dr. Iliff was the 1st Dr. we saw > > who took the > > time > > > to > > > > explain Bleph to us. We left his office feeling > > like it was the > > > > only good medical experience we had had in 4 > > months with the > > > > exception of 's healthy birth. He at first > > was so quiet > > that > > > I > > > > was thinking " oh no here we go again another > > pompous jerk who > > > won't > > > > take time for us " but, after he looked over > > very carefully > > he > > > > turned to us, smiled, and didn't stop talking > > for about 5 > > > minutes. > > > > Then he took a lot of time to answer all of our > > awkward > > questions > > > > and told us stories to help us accept and > > understand. Sometimes > > > he > > > > is all business but I think that is because he > > is so busy. I > > > > consider him very kind and gentle. > > > > > To answer your question about another baby > > with the chances of > > > > bleph. I can only say I would not change > > anything I have for > > > > anything different. It sounds like you want to > > have more > > children > > > > so you should. You took the chance the 1st time > > and you wound > > up > > > > with a wonderful child who will grow up to be as > > brave and > > > === message truncated === > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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