Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 , Been where you are for a year and a half from a federal facility. Fight is all I do when I have the strength. Hang in there. God Bless, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 , Been where you are for a year and a half from a federal facility. Fight is all I do when I have the strength. Hang in there. God Bless, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Hi , Welcome to the group. Unfortunately, your story rings a bell with me, and many other people working in school districts across the country. I had much the same story...roof leaking.....mold growing....people supportive at first until they were threatened....too sick to work....fighting for disability. I am so tired right now that I can't write very much, but I just wanted to let you know that you will be supported and understood here. It is a terrible battle to fight...but much easier when you have friends in your corner. God Bless, ML Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Hi , Welcome to the group. Unfortunately, your story rings a bell with me, and many other people working in school districts across the country. I had much the same story...roof leaking.....mold growing....people supportive at first until they were threatened....too sick to work....fighting for disability. I am so tired right now that I can't write very much, but I just wanted to let you know that you will be supported and understood here. It is a terrible battle to fight...but much easier when you have friends in your corner. God Bless, ML Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 Hi Beth, I just looked at your pix you posted of ryan:) He looks just like our wee guy Ethan, (age 21/2) with the blonde hair, blue eyes:) but only with s left eye, as Ethan had had no surgeries. Has s left eye dropped over time, or was it not operated on? It doesn;t look as if it has been? Ethan won't be having any surgeries until about age 4-5, his opthalmologist said as long as his pupils are exposed then he see's like you or I, you would never guess he had bleph (only by looking) by the way he runs around, he looks straight ahead, and never had the chin up posture at all. There are pix of him wearing a pumpkin suit at the site....nice to hear from you and welcome to the group:) Leanne and family NZ > 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 24, 2005 Report Share Posted July 24, 2005 Dear Beth s mummy my husband has Bleps we have three children our first born thon was born with the most beautiful big brown eyes we were told that steven was a one in a million baby and that our children would not have this condition so when our second son was born with bleph we were devastated then we went on to have our daughter who also has bleph through this site we found out had we had only had johnathon the line in our family would have stopped however we now face this again if our children have children take care julie uk steven age 4o johnathon age 16 christopher age 14 stephanie age 12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Hi Beth, My husband Dana is the first person in his family to have Bleph. His brother does not have it, and no one else in his family has been found to have it. His mother was not working when she was pregnant and was not exposed to any chemicals that we know of. It's just one of those things. We have two children, our son Cameron who is 15 months does have it, and our daughter is 3 1/2 and doesn't have it. My husband had four surgeries as a child and they were quite successful. Fortunately we are able to wait on surgery for Cameron until he is older. We only recently had the diagonisis. My husband always thought he had only ptosis and epicanthic fold issues, but when we saw the genetecist for Cameron they were both diagnosed. Anyway, I am so glad I found this group - it is nice to know that there are others out there. Take care all, How California --- Beth <srmrmm@...> wrote: > 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 26, 2005 Report Share Posted July 26, 2005 Hello Leanne, Yes, your Ethan does remind me of my , Blond hair and all. Some of the other poses as well. I would have liked to post more photos of for you to see but I was unable to post the same way you did. I tried all available to me. Anyway, to answer your question. would not have had to have surgery so early had it not been for his left eye being effected so much by Ptosis. His Right was just fine for sight to develop properly. The doc did sling both eyes for the sake of symmetry, which was achieved at the time. I supposed they have slipped over the past two years but his sight is developing normally (we have him tested 2x per year by his Pediatric Ophthalmologist). He walks around normally and you wouldn't know he had Bleph other than the obvious. He actually uses his left eye more than his right because he has developed Stribismus (Lazy Eye) in his right. Not enough to effect his vision at this time and I am told it is not related at all to his BPES. Who knows??? Maybe I should post a question to see if anyone else suffers from Strabismus. Perhaps I will. All my best. Beth leanne30nz <tltne@...> wrote: Hi Beth,I just looked at your pix you posted of ryan:) He looks just like our wee guy Ethan, (age 21/2) with the blonde hair, blue eyes:) but only with s left eye, as Ethan had had no surgeries. Has s left eye dropped over time, or was it not operated on? It doesn;t look as if it has been? Ethan won't be having any surgeries until about age 4-5, his opthalmologist said as long as his pupils are exposed then he see's like you or I, you would never guess he had bleph (only by looking) by the way he runs around, he looks straight ahead, and never had the chin up posture at all. There are pix of him wearing a pumpkin suit at the site....nice to hear from you and welcome to the group:)Leanne and family NZ> 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 Start your day with - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Hi Beth, My husband did have the lazy eye too. I understand that there is a weak correlation to Bleph. --- Beth Mullane <srmrmm@...> wrote: > Hello Leanne, > Yes, your Ethan does remind me of my , Blond > hair and all. Some of the other poses as well. I > would have liked to post more photos of for you > to see but I was unable to post the same way you > did. I tried all available to me. Anyway, to > answer your question. > would not have had to have surgery so early had > it not been for his left eye being effected so much > by Ptosis. His Right was just fine for sight to > develop properly. The doc did sling both eyes for > the sake of symmetry, which was achieved at the > time. I supposed they have slipped over the past > two years but his sight is developing normally (we > have him tested 2x per year by his Pediatric > Ophthalmologist). He walks around normally and you > wouldn't know he had Bleph other than the obvious. > He actually uses his left eye more than his right > because he has developed Stribismus (Lazy Eye) in > his right. Not enough to effect his vision at this > time and I am told it is not related at all to his > BPES. Who knows??? Maybe I should post a question > to see if anyone else suffers from Strabismus. > Perhaps I will. > All my best. > Beth > > > leanne30nz <tltne@...> wrote: > Hi Beth, > > I just looked at your pix you posted of ryan:) He > looks just like > our wee guy Ethan, (age 21/2) with the blonde hair, > blue eyes:) but > only with s left eye, as Ethan had had no > surgeries. Has s > left eye dropped over time, or was it not operated > on? It doesn;t > look as if it has been? Ethan won't be having any > surgeries until > about age 4-5, his opthalmologist said as long as > his pupils are > exposed then he see's like you or I, you would never > guess he had > bleph (only by looking) by the way he runs around, > he looks straight > ahead, and never had the chin up posture at all. > There are pix of > him wearing a pumpkin suit at the site....nice > to hear from > you and welcome to the group:) > > Leanne and family NZ > > > > 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 26, 2005 Report Share Posted July 26, 2005 Hi & Beth Have a look here: http://www3.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=110100 The trouble is - I don't know what some of these things mean, but I am pretty sure that if you show the list to your optician they'd be able to help you out. As you can see Strabismus is on the list. Regards Shireen > > Hi Beth, > > My husband did have the lazy eye too. I understand that there > is a weak correlation to Bleph. > > > > --- Beth Mullane <srmrmm@...> wrote: > > > Hello Leanne, Extracted: ------------ > > He actually uses his left eye more than his right because he has > > developed Stribismus (Lazy Eye) in his right. Not enough to effect > > his vision at this time and I am told it is not related at > all to his > > BPES. Who knows??? Maybe I should post a question to see > if anyone > > else suffers from Strabismus. > > the way he runs around, he looks straight ahead, and never had the > > chin up posture at all. > > years old at > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2005 Report Share Posted July 27, 2005 Hi Beth My name is Beth, also. I have BPES and so does my daughter Lily. My dad has it, my brother does not, it's always 50/50. In my family, we really hoped Lily would not have it and it would " end " in our family. But it wasn't meant to be, I suppose. Lily has slings, she will be one yr. old on Saturday. I am interested to know about Dr. Iliss. We live in North. Virginia, Lily had surgery at Children's with Dr. Gavaris but we are going to see Dr. Iliss next week as a second opinion. I just want to be sure we are using the right surgeon when she has her epicanthus surgery in the future. Please write me or call me - 540-751-1560. I know you said you met Pam, do you live in NY or do you live in the Balto area? Beth Gordon > 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 27, 2005 Report Share Posted July 27, 2005 Hi I have a lazy eye, my dad doesn't, we are watching Lily hoping she doesn't develop it. For me, it's always been the " worst " (most noticeable) symptom. How it was explained to me, it is correlated to BPES because the obstructed vision causes the lazy eye to develop. If one eye is less obstructed than the other, you depend on that eye more. I could be totally wrong but that's how I have understood it. Beth > > > 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 27, 2005 Report Share Posted July 27, 2005 Beth Mullane wrote: > Not enough to effect his vision at this time and I am told it > is not related at all to his BPES. Who knows??? Maybe I should post > a question to see if anyone else suffers from Strabismus. Perhaps I > will. No need to ask separately, judging by the responses. :-) I have strabismus. Had a 'lazy eye' when I was a child, with occular therapy, eye patches, etc. Today, I look with one eye at a time and get a bit confused if I try to look with both at once. My binucular vision is therefore hopeless, so '3D' movies and photos are a waste of time for me, and getting my train ticket into the barrier slot each day is a hit-or-miss affair. I think it's probably a bit disconcerting when I'm talking to people and switch eyes, as the 'off' eye relaxes and floats inwards until I switch back to it, at which point it snaps back to centre and the other one has a rest and wanders inwards. Ha! I had a number of operations ('squint' procedures) to try to correct it when I was young, but I'm not sure how successful they've been. Whether it's related to BPEI is another question. I think it's one of the many 'other' eye issues that come with the territory, along with trichiasis, entropion, floaters, myopia, etc etc. Comorbid, but not " officially " a defining part of BPEI. Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2005 Report Share Posted July 27, 2005 Hello Beth, 's doctor is Dr. Iliff not Iliss. He is Director of Oculoplastic and Reconstructive Surgery at Wilmer Opthalmological Institute at s Hopkins in Baltimore MD. I think very highly of Dr. Iliff. He is definitely the right person for . We travel from Lockport, New York (close by Buffalo, NY) into Baltimore to see him and we think it is worth the trip. Buffalo has a Children's Hospital with a Pediatric Ophthalmology department but we choose to see a Oculoplastic person for all surgery. Who was your surgeon growing up? We have a local Oculoplastic Doctor but he seems to mostly work on people with Ptosis and geriatric patients. Thank you for sharing your family information with me. This is all so new. Were people mean to you and your dad growing up? Or is it just another thing to deal with? After all, who of us is perfect and who of us hasn't had most of it pointed out to us at some time or other? I am so accustomed to 's eyes I think he is Beautiful and I tell him so! Do you think this is a mistake because other people wont see him the way I do? What was your experience? Just curious. If you care to share. I am always looking to improve my parenting skills. ( or lack of them) All the best. I hope to hear from you. Beth bethgordon03 <bethgordon03@...> wrote: Hi BethMy name is Beth, also. I have BPES and so does my daughter Lily. My dad has it, my brother does not, it's always 50/50. In my family, we really hoped Lily would not have it and it would "end" in our family. But it wasn't meant to be, I suppose. Lily has slings, she will be one yr. old on Saturday. I am interested to know about Dr. Iliss. We live in North. Virginia, Lily had surgery at Children's with Dr. Gavaris but we are going to see Dr. Iliss next week as a second opinion. I just want to be sure we are using the right surgeon when she has her epicanthus surgery in the future. Please write me or call me - 540-751-1560. I know you said you met Pam, do you live in NY or do you live in the Balto area? Beth Gordon> 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 Start your day with - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2005 Report Share Posted July 27, 2005 This is the same doctor, it was late and I had the name wrong, Lily will see him for the first time next week. I see that he is qualified, but is he nice? I have been so disappointed by how little doctors seem to care about our little family. Yes, people were sometimes mean. Not all the time, but sometimes. I hate to say it but it's the truth, and what is even more sad to me is you just become desensitized. It got better as I got older. It's better today, too because kids are more used to kids with differences. I grew up in PGH in the 70s, if you lived in Buffalo in the 70s you may be able to imagine, everyone looked the same. This might not be politically correct but it's the truth. It was worse for my dad, in the 40s. For our kids, I think yes they will get their feelings hurt and they will get tired of explaining it but they will be fine, and they will be the people God intended them to be. I think all kids are beautiful, because of their innocence. But let's be realistic, there are plenty of people who don't have bleph or any other cranio facial issue that aren't beautiful, it's all relative. Beauty is in the eye of the beholder and all of that. I wish my mom were more email savvy, I think she did a great job helping me, I love her so much more now when I realize everything she did for me and she was very young and she and my dad didn't have much family support. She made me believe I was special. That's what any good mom should do. Keep telling your child he is beautiful, his sense of self is going to be determined by YOU and how you love him. As long as he feels beautiful and loved, it doesn't matter what others say or do. Other people really do think your son is beautiful,too. Don't assume that he isn't cute because he is. This is true for all of us, when you feel frumpy and your husband says you are gorgeous, it doesn't matter unless you believe it. When Lily was born it brought back all the pain for me. But I thought about two things, my whole life I felt absolutely adored by my parents, and it has given me the strength to deal with every obstacle I have ever faced, and when it comes down to it, I wish Lily didn't have bleph, but I don't wish that I were anyone else but me. I have to also add, I have a great husband, it's been hard on him, too, he helps me. And I think it's great he doesn't have as much baggage as I do about having this, and in other ways it's good I can just say to people, " she is like me " and they accept that or they at least shut up about it. My surgeon as Dr. Weiser in PGH but he is now deceased. He was wonderful. If you knew that you carried the gene (like I do) would you have another baby knowing the risks are 50/50? I struggle with this all the time. Beth > Hi Beth > > My name is Beth, also. I have BPES and so does my daughter Lily. My > dad has it, my brother does not, it's always 50/50. In my family, we > really hoped Lily would not have it and it would " end " in our > family. But it wasn't meant to be, I suppose. Lily has slings, she > will be one yr. old on Saturday. > > I am interested to know about Dr. Iliss. We live in North. Virginia, > Lily had surgery at Children's with Dr. Gavaris but we are > going to see Dr. Iliss next week as a second opinion. I just want to > be sure we are using the right surgeon when she has her epicanthus > surgery in the future. Please write me or call me - 540-751-1560. I > know you said you met Pam, do you live in NY or do you live in the > Balto area? > > Beth Gordon > > --- In blepharophimosis , " Beth " <srmrmm@y...> wrote: > > 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 27, 2005 Report Share Posted July 27, 2005 Ok Beth .....You have me crying here ...Not in a bad way either. i think my kids are truly beautiful inside and out. I am going thru it with the new baby everytime we go out people make a comment like " oh she is so sleppy" or " look she is just waking up" breaks my heart sometimes i say yah...other times i explain depends on my mood and the person....but my kids are the most beautiful things in the world and they grow up knowing so :-) thanks so the post i enjoyed it Sharon bethgordon03 <bethgordon03@...> wrote: This is the same doctor, it was late and I had the name wrong, Lily will see him for the first time next week. I see that he is qualified, but is he nice? I have been so disappointed by how little doctors seem to care about our little family. Yes, people were sometimes mean. Not all the time, but sometimes. I hate to say it but it's the truth, and what is even more sad to me is you just become desensitized. It got better as I got older. It's better today, too because kids are more used to kids with differences. I grew up in PGH in the 70s, if you lived in Buffalo in the 70s you may be able to imagine, everyone looked the same. This might not be politically correct but it's the truth. It was worse for my dad, in the 40s. For our kids, I think yes they will get their feelings hurt and they will get tired of explaining it but they will be fine, and they will be the people God intended them to be. I think all kids are beautiful, because of their innocence. But let's be realistic, there are plenty of people who don't have bleph or any other cranio facial issue that aren't beautiful, it's all relative. Beauty is in the eye of the beholder and all of that. I wish my mom were more email savvy, I think she did a great job helping me, I love her so much more now when I realize everything she did for me and she was very young and she and my dad didn't have much family support. She made me believe I was special. That's what any good mom should do. Keep telling your child he is beautiful, his sense of self is going to be determined by YOU and how you love him. As long as he feels beautiful and loved, it doesn't matter what others say or do. Other people really do think your son is beautiful,too. Don't assume that he isn't cute because he is. This is true for all of us, when you feel frumpy and your husband says you are gorgeous, it doesn't matter unless you believe it. When Lily was born it brought back all the pain for me. But I thought about two things, my whole life I felt absolutely adored by my parents, and it has given me the strength to deal with every obstacle I have ever faced, and when it comes down to it, I wish Lily didn't have bleph, but I don't wish that I were anyone else but me. I have to also add, I have a great husband, it's been hard on him, too, he helps me. And I think it's great he doesn't have as much baggage as I do about having this, and in other ways it's good I can just say to people, "she is like me" and they accept that or they at least shut up about it.My surgeon as Dr. Weiser in PGH but he is now deceased. He was wonderful. If you knew that you carried the gene (like I do) would you have another baby knowing the risks are 50/50? I struggle with this all the time.Beth> > 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 27, 2005 Report Share Posted July 27, 2005 I know Sharon, because I go through the same things, it's getting easier now that she is trying to walk, talk. My mom said it is hardest when the babies are tiny because it's all about how they look. Your is beautiful, and I am so glad she can open her eyes. Lily couldn't. I admire you very much you had two boys close together and now the third, I don't know how I will handle another baby with bleph (if we try for one) plus working and life and marriage and all of it. You seem like a really great mom. And I only know you from email. Beth > > > 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 27, 2005 Report Share Posted July 27, 2005 AMEN!!!! Mine too!Sharon A <besilly12000@...> wrote: Ok Beth .....You have me crying here ...Not in a bad way either. i think my kids are truly beautiful inside and out. I am going thru it with the new baby everytime we go out people make a comment like " oh she is so sleppy" or " look she is just waking up" breaks my heart sometimes i say yah...other times i explain depends on my mood and the person....but my kids are the most beautiful things in the world and they grow up knowing so :-) thanks so the post i enjoyed it Sharon bethgordon03 <bethgordon03@...> wrote: This is the same doctor, it was late and I had the name wrong, Lily will see him for the first time next week. I see that he is qualified, but is he nice? I have been so disappointed by how little doctors seem to care about our little family. Yes, people were sometimes mean. Not all the time, but sometimes. I hate to say it but it's the truth, and what is even more sad to me is you just become desensitized. It got better as I got older. It's better today, too because kids are more used to kids with differences. I grew up in PGH in the 70s, if you lived in Buffalo in the 70s you may be able to imagine, everyone looked the same. This might not be politically correct but it's the truth. It was worse for my dad, in the 40s. For our kids, I think yes they will get their feelings hurt and they will get tired of explaining it but they will be fine, and they will be the people God intended them to be. I think all kids are beautiful, because of their innocence. But let's be realistic, there are plenty of people who don't have bleph or any other cranio facial issue that aren't beautiful, it's all relative. Beauty is in the eye of the beholder and all of that. I wish my mom were more email savvy, I think she did a great job helping me, I love her so much more now when I realize everything she did for me and she was very young and she and my dad didn't have much family support. She made me believe I was special. That's what any good mom should do. Keep telling your child he is beautiful, his sense of self is going to be determined by YOU and how you love him. As long as he feels beautiful and loved, it doesn't matter what others say or do. Other people really do think your son is beautiful,too. Don't assume that he isn't cute because he is. This is true for all of us, when you feel frumpy and your husband says you are gorgeous, it doesn't matter unless you believe it. When Lily was born it brought back all the pain for me. But I thought about two things, my whole life I felt absolutely adored by my parents, and it has given me the strength to deal with every obstacle I have ever faced, and when it comes down to it, I wish Lily didn't have bleph, but I don't wish that I were anyone else but me. I have to also add, I have a great husband, it's been hard on him, too, he helps me. And I think it's great he doesn't have as much baggage as I do about having this, and in other ways it's good I can just say to people, "she is like me" and they accept that or they at least shut up about it.My surgeon as Dr. Weiser in PGH but he is now deceased. He was wonderful. If you knew that you carried the gene (like I do) would you have another baby knowing the risks are 50/50? I struggle with this all the time.Beth> > 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 27, 2005 Report Share Posted July 27, 2005 Someone thought my son was sleeping while he was standing up one time. Can you imagine a 2 year old child standing to sleep? She was surprised when he looked up at her. I did not have to explain that time. BethSharon A <besilly12000@...> wrote: Ok Beth .....You have me crying here ...Not in a bad way either. i think my kids are truly beautiful inside and out. I am going thru it with the new baby everytime we go out people make a comment like " oh she is so sleppy" or " look she is just waking up" breaks my heart sometimes i say yah...other times i explain depends on my mood and the person....but my kids are the most beautiful things in the world and they grow up knowing so :-) thanks so the post i enjoyed it Sharon bethgordon03 <bethgordon03@...> wrote: This is the same doctor, it was late and I had the name wrong, Lily will see him for the first time next week. I see that he is qualified, but is he nice? I have been so disappointed by how little doctors seem to care about our little family. Yes, people were sometimes mean. Not all the time, but sometimes. I hate to say it but it's the truth, and what is even more sad to me is you just become desensitized. It got better as I got older. It's better today, too because kids are more used to kids with differences. I grew up in PGH in the 70s, if you lived in Buffalo in the 70s you may be able to imagine, everyone looked the same. This might not be politically correct but it's the truth. It was worse for my dad, in the 40s. For our kids, I think yes they will get their feelings hurt and they will get tired of explaining it but they will be fine, and they will be the people God intended them to be. I think all kids are beautiful, because of their innocence. But let's be realistic, there are plenty of people who don't have bleph or any other cranio facial issue that aren't beautiful, it's all relative. Beauty is in the eye of the beholder and all of that. I wish my mom were more email savvy, I think she did a great job helping me, I love her so much more now when I realize everything she did for me and she was very young and she and my dad didn't have much family support. She made me believe I was special. That's what any good mom should do. Keep telling your child he is beautiful, his sense of self is going to be determined by YOU and how you love him. As long as he feels beautiful and loved, it doesn't matter what others say or do. Other people really do think your son is beautiful,too. Don't assume that he isn't cute because he is. This is true for all of us, when you feel frumpy and your husband says you are gorgeous, it doesn't matter unless you believe it. When Lily was born it brought back all the pain for me. But I thought about two things, my whole life I felt absolutely adored by my parents, and it has given me the strength to deal with every obstacle I have ever faced, and when it comes down to it, I wish Lily didn't have bleph, but I don't wish that I were anyone else but me. I have to also add, I have a great husband, it's been hard on him, too, he helps me. And I think it's great he doesn't have as much baggage as I do about having this, and in other ways it's good I can just say to people, "she is like me" and they accept that or they at least shut up about it.My surgeon as Dr. Weiser in PGH but he is now deceased. He was wonderful. If you knew that you carried the gene (like I do) would you have another baby knowing the risks are 50/50? I struggle with this all the time.Beth> > 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 27, 2005 Report Share Posted July 27, 2005 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 thoughtful as you are. Beth bethgordon03 <bethgordon03@...> wrote: This is the same doctor, it was late and I had the name wrong, Lily will see him for the first time next week. I see that he is qualified, but is he nice? I have been so disappointed by how little doctors seem to care about our little family. Yes, people were sometimes mean. Not all the time, but sometimes. I hate to say it but it's the truth, and what is even more sad to me is you just become desensitized. It got better as I got older. It's better today, too because kids are more used to kids with differences. I grew up in PGH in the 70s, if you lived in Buffalo in the 70s you may be able to imagine, everyone looked the same. This might not be politically correct but it's the truth. It was worse for my dad, in the 40s. For our kids, I think yes they will get their feelings hurt and they will get tired of explaining it but they will be fine, and they will be the people God intended them to be. I think all kids are beautiful, because of their innocence. But let's be realistic, there are plenty of people who don't have bleph or any other cranio facial issue that aren't beautiful, it's all relative. Beauty is in the eye of the beholder and all of that. I wish my mom were more email savvy, I think she did a great job helping me, I love her so much more now when I realize everything she did for me and she was very young and she and my dad didn't have much family support. She made me believe I was special. That's what any good mom should do. Keep telling your child he is beautiful, his sense of self is going to be determined by YOU and how you love him. As long as he feels beautiful and loved, it doesn't matter what others say or do. Other people really do think your son is beautiful,too. Don't assume that he isn't cute because he is. This is true for all of us, when you feel frumpy and your husband says you are gorgeous, it doesn't matter unless you believe it. When Lily was born it brought back all the pain for me. But I thought about two things, my whole life I felt absolutely adored by my parents, and it has given me the strength to deal with every obstacle I have ever faced, and when it comes down to it, I wish Lily didn't have bleph, but I don't wish that I were anyone else but me. I have to also add, I have a great husband, it's been hard on him, too, he helps me. And I think it's great he doesn't have as much baggage as I do about having this, and in other ways it's good I can just say to people, "she is like me" and they accept that or they at least shut up about it.My surgeon as Dr. Weiser in PGH but he is now deceased. He was wonderful. If you knew that you carried the gene (like I do) would you have another baby knowing the risks are 50/50? I struggle with this all the time.Beth> > 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 28, 2005 Report Share Posted July 28, 2005 Well put! Rae AnnBeth Mullane <srmrmm@...> wrote: 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 thoughtful as you are. Beth bethgordon03 <bethgordon03@...> wrote: This is the same doctor, it was late and I had the name wrong, Lily will see him for the first time next week. I see that he is qualified, but is he nice? I have been so disappointed by how little doctors seem to care about our little family. Yes, people were sometimes mean. Not all the time, but sometimes. I hate to say it but it's the truth, and what is even more sad to me is you just become desensitized. It got better as I got older. It's better today, too because kids are more used to kids with differences. I grew up in PGH in the 70s, if you lived in Buffalo in the 70s you may be able to imagine, everyone looked the same. This might not be politically correct but it's the truth. It was worse for my dad, in the 40s. For our kids, I think yes they will get their feelings hurt and they will get tired of explaining it but they will be fine, and they will be the people God intended them to be. I think all kids are beautiful, because of their innocence. But let's be realistic, there are plenty of people who don't have bleph or any other cranio facial issue that aren't beautiful, it's all relative. Beauty is in the eye of the beholder and all of that. I wish my mom were more email savvy, I think she did a great job helping me, I love her so much more now when I realize everything she did for me and she was very young and she and my dad didn't have much family support. She made me believe I was special. That's what any good mom should do. Keep telling your child he is beautiful, his sense of self is going to be determined by YOU and how you love him. As long as he feels beautiful and loved, it doesn't matter what others say or do. Other people really do think your son is beautiful,too. Don't assume that he isn't cute because he is. This is true for all of us, when you feel frumpy and your husband says you are gorgeous, it doesn't matter unless you believe it. When Lily was born it brought back all the pain for me. But I thought about two things, my whole life I felt absolutely adored by my parents, and it has given me the strength to deal with every obstacle I have ever faced, and when it comes down to it, I wish Lily didn't have bleph, but I don't wish that I were anyone else but me. I have to also add, I have a great husband, it's been hard on him, too, he helps me. And I think it's great he doesn't have as much baggage as I do about having this, and in other ways it's good I can just say to people, "she is like me" and they accept that or they at least shut up about it.My surgeon as Dr. Weiser in PGH but he is now deceased. He was wonderful. If you knew that you carried the gene (like I do) would you have another baby knowing the risks are 50/50? I struggle with this all the time.Beth> > 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 28, 2005 Report Share Posted July 28, 2005 Thank you, I do want another baby but I just feel so overwhelmed sometimes. Thank you all for your kindness. I am not so brave.... I am having a problem finding childcare. It's not easy where I live, and I always explain to the sitter over the phone about us, and today we went to a sitter's house, I explained about Lily to the four kids, (the 6 yr old immediately asked what's wrong with baby when we walked in the door) anyway while I talked to the mom-sitter the 6 yr old stuck her finger in Lily's eye, and what was worse is she refused to apologize or explain. The mom didn't handle it so well and really first graders should know better than to stick finger's in a baby's eye. It really hurt me but I stayed calm. I figured if that happened right in front of me I don't want to think about what will happen when I am not there, there has got to be a good sitter out there. (sigh) > > > 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 28, 2005 Report Share Posted July 28, 2005 Beth, thank you for sharing this - it brought a tear to my eye! Also its exactly how I have been brought up and am bringing my daughter up too. Thank you. Clare UKbethgordon03 <bethgordon03@...> wrote: This is the same doctor, it was late and I had the name wrong, Lily will see him for the first time next week. I see that he is qualified, but is he nice? I have been so disappointed by how little doctors seem to care about our little family. Yes, people were sometimes mean. Not all the time, but sometimes. I hate to say it but it's the truth, and what is even more sad to me is you just become desensitized. It got better as I got older. It's better today, too because kids are more used to kids with differences. I grew up in PGH in the 70s, if you lived in Buffalo in the 70s you may be able to imagine, everyone looked the same. This might not be politically correct but it's the truth. It was worse for my dad, in the 40s. For our kids, I think yes they will get their feelings hurt and they will get tired of explaining it but they will be fine, and they will be the people God intended them to be. I think all kids are beautiful, because of their innocence. But let's be realistic, there are plenty of people who don't have bleph or any other cranio facial issue that aren't beautiful, it's all relative. Beauty is in the eye of the beholder and all of that. I wish my mom were more email savvy, I think she did a great job helping me, I love her so much more now when I realize everything she did for me and she was very young and she and my dad didn't have much family support. She made me believe I was special. That's what any good mom should do. Keep telling your child he is beautiful, his sense of self is going to be determined by YOU and how you love him. As long as he feels beautiful and loved, it doesn't matter what others say or do. Other people really do think your son is beautiful,too. Don't assume that he isn't cute because he is. This is true for all of us, when you feel frumpy and your husband says you are gorgeous, it doesn't matter unless you believe it. When Lily was born it brought back all the pain for me. But I thought about two things, my whole life I felt absolutely adored by my parents, and it has given me the strength to deal with every obstacle I have ever faced, and when it comes down to it, I wish Lily didn't have bleph, but I don't wish that I were anyone else but me. I have to also add, I have a great husband, it's been hard on him, too, he helps me. And I think it's great he doesn't have as much baggage as I do about having this, and in other ways it's good I can just say to people, "she is like me" and they accept that or they at least shut up about it.My surgeon as Dr. Weiser in PGH but he is now deceased. He was wonderful. If you knew that you carried the gene (like I do) would you have another baby knowing the risks are 50/50? I struggle with this all the time.Beth> > 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 28, 2005 Report Share Posted July 28, 2005 Oh my gosh!!! What a terrible thing to happen! Sweet innocent Lily. I use college age kids. I find them mature and available at flexible times of the day because of College schedules. Also why not a reputable day care facility? Perhaps you could contact your local Church, High school or College guidance office for individuals or good facilities. They may be able to help you out. There is nothing worse than leaving your children with people you are uncomfortable with Pure torture. Beth bethgordon03 <bethgordon03@...> wrote: Thank you, I do want another baby but I just feel so overwhelmed sometimes. Thank you all for your kindness. I am not so brave....I am having a problem finding childcare. It's not easy where I live, and I always explain to the sitter over the phone about us, and today we went to a sitter's house, I explained about Lily to the four kids, (the 6 yr old immediately asked what's wrong with baby when we walked in the door) anyway while I talked to the mom-sitter the 6 yr old stuck her finger in Lily's eye, and what was worse is she refused to apologize or explain. The mom didn't handle it so well and really first graders should know better than to stick finger's in a baby's eye. It really hurt me but I stayed calm. I figured if that happened right in front of me I don't want to think about what will happen when I am not there, there has got to be a good sitter out there.(sigh)> > > 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...
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