Re: Re: Hi Tonikka, finally got a chance to see pics.

[Guest guest]

hi there beth, thanks for the compliment on lynden........... my son has had 4 surgeries and yep he did endure alot of teasing, but he had most of his families support (less his other grandparents..... long story) anyway but it seems to have made him a stronger person. i really mean that, he has his ups and his downs but now when he tells me that someone has made fun of him he tells us that his comeback lines are of this....... god made me that way, or if you don't like me don't look at me, or thats too bad because my mom tells me i am beautiful. when he first told us this i was shocked because he used to come home from school and daycare and cry and cry and i would always tell him to say these things. my son is young so i knew he would not say these things but i guess after drillng this in to his head it obvously worked. he is almost 7 and has the heart of gold and i am not saying this because he is my son but truly is a passionate child. i am sure your daughter will be beautiful all her life and i am sure she will deal with whatever ups and downs that come her way, just continue to be a great parent and noone will ever get in her way. i know you have been through all this yourself and my words are probably repeats from over the years but i know that you know you and your daughter are beautiful and important and guess what?? that is the ONLY thing that matters in this day and age. talk to you soon.

Tonikka

blepharophimosis Any one in Florida area/Are we doing> the right> > thing?> >> >> > Our son Darryl has bpes, he is the only one with it in our family> and> > we have so many questions. He had his first surgery done when he> was> > 5 weeks old cause he couldn't open up his eyelids at all. He> looked> > like he was sleeping all the time and cried alot. Since the> surgery> > he is doing much better and is now 8 months old and needs to go in> > and get an adjustment done cause his lids look low again. I was> just> > wandering if anyone from Florida is in this group? I'm also just> > wondering if my husband and I are doing the correct thing for our> > child, I just feel like were kinda in the dark and just going by> what> > our doctor tells us. We have a really wonderful surgeron and in> his> > 20 years or so of practice he has seen a few children with bpes> but> > Darryl is his youngest patient to date. I have read some of the> > group talking about genetic testing. If we go see a genetic> > counselor how can they help us?> > Any information anyone feels like sending our way would be very> much> > appreciated.> > I think this is a wonderful group with lots of great information> and> > look forward to being a part of it.> > When we get time we will be posting pictures of our Darryl and his> > other sister and brother as well.> > Take care everyone.> > Cheryl, , , Hollie & Darryl> >> >> >> >

[Guest guest]

Hi Cheryl,

Well your wee guy sounds just like our wee man Ethan, a very happy smiley baby, always get comments on how happy and smiley he is! they say to me, *does he ever cry*? he has his moments:) lately he has just started getting a little attitude, either when he wants something, or you take something off him, he will usually throw whatevers in his hand! little rascal:) he has just started to hit too! to our surprise, he thinks its a game, how do you react, we don't believe in spankings, so we just tell him NO, which he has just started to say also:) you can't win:) they keep you on your toes thats for sure.

-- blepharophimosis Any one in Florida area/Are we doing> the right> > thing?> >> >> > Our son Darryl has bpes, he is the only one with it in our family> and> > we have so many questions. He had his first surgery done when he> was> > 5 weeks old cause he couldn't open up his eyelids at all. He> looked> > like he was sleeping all the time and cried alot. Since the> surgery> > he is doing much better and is now 8 months old and needs to go in> > and get an adjustment done cause his lids look low again. I was> just> > wandering if anyone from Florida is in this group? I'm also just> > wondering if my husband and I are doing the correct thing for our> > child, I just feel like were kinda in the dark and just going by> what> > our doctor tells us. We have a really wonderful surgeron and in> his> > 20 years or so of practice he has seen a few children with bpes> but> > Darryl is his youngest patient to date. I have read some of the> > group talking about genetic testing. If we go see a genetic> > counselor how can they help us?> > Any information anyone feels like sending our way would be very> much> > appreciated.> > I think this is a wonderful group with lots of great information> and> > look forward to being a part of it.> > When we get time we will be posting pictures of our Darryl and his> > other sister and brother as well.> > Take care everyone.> > Cheryl, , , Hollie & Darryl> >> >> >> >

[Guest guest]

Hi Beth

I know how you feel and am thinking of you. Loads of family support and friends too definetly helps. I have bleph, my son has it, my sister, neice and dad too.

MY Sam is 9 months but wont have surgery until about 4 years of age. I remember my teasing - people said I was chinese and at the time I didnt know what I had and I used to think they were weird. The whole thing makes me really emotional as well and time helps too.

Let us know how you get on

bethgordon03 <bethgordon03@...> wrote:

HiI just joined this group and I want you know your son is so beautiful. I am the mom of a two month old daughter who has BPES, and I have it, too. I am a little emotional right now, because dealing with her two surgeries and the reality that she has BPES has brought back so many memories of teasing and painful comments. I am so worried for my little girl and for all the kids who have their feelings hurt. She has had slings put in to open her eyes, she has not healed from it completely yet. I don't know what other surgeries she will have later. Beth> > hi , , holly and Darryl> > our son Lynden had surgery at an early age too......... 6 weeks> old, if you> > go into the pictures and look my son LYNDEN you can see by his 1st> picture> > that we had big time problems with his looking like he> is "sleeping" as> > people called it, having the surgery so young helped my son with> his vision> > tremendously.> > Tonikka> > blepharophimosis Any one in Florida area/Are we doing> the right> > thing?> >> >> > Our son Darryl has bpes, he is the only one with it in our family> and> > we have so many questions. He had his first surgery done when he> was> > 5 weeks old cause he couldn't open up his eyelids at all. He> looked> > like he was sleeping all the time and cried alot. Since the> surgery> > he is doing much better and is now 8 months

old and needs to go in> > and get an adjustment done cause his lids look low again. I was> just> > wandering if anyone from Florida is in this group? I'm also just> > wondering if my husband and I are doing the correct thing for our> > child, I just feel like were kinda in the dark and just going by> what> > our doctor tells us. We have a really wonderful surgeron and in> his> > 20 years or so of practice he has seen a few children with bpes> but> > Darryl is his youngest patient to date. I have read some of the> > group talking about genetic testing. If we go see a

genetic> > counselor how can they help us?> > Any information anyone feels like sending our way would be very> much> > appreciated.> > I think this is a wonderful group with lots of great information> and> > look forward to being a part of it.> > When we get time we will be posting pictures of our Darryl and his> > other sister and brother as well.> > Take care everyone.> > Cheryl, , , Hollie & Darryl> >> >> >> >