Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Hi Donna, I'm so glad that you are feeling better about your daughter's eyes now. Having a diagnosis and getting to know others in the same situation really helps! I go to swim school and baby song with Alice and I have never had any comments on her eyes.. I think that she must have the opportunity to enjoy activities and meet other babies and I will never let my-self be hold back because of the way she looks. I had my first surgery when I was 6 and it wasn't traumatic at all. I was asleep during the operation and I don't have any bad memories at all. I got gift from my parents and remember it as something exciting. I had another surgery at 17 and that was just awful... I was awake and felt and heard things going on above my eyes (even if I didn't feel pain) and it was just horrible! I won't ever do it again... I can also tell you that my BPES is something that people just don't notice. My surgery was a success and a wear some eye make-up and it just doesn't look that different from other peoples eyes. People tend to get surprised when I tell them about my BPES (you can see me on a picture under album "Alice"). So Halle might not ever be fully aware of her looking different. It all depens on how well the surgery goes and also I guess how severe the BPES is. With Alice we are going to wait with surgery. She can see allright and therefor it can be wise to wait so that her face isn't changing so much. They are still growing so much and the shape of the head still changes. I wish you the best and hope to hear from you again. Greetings from Stina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Hi Donna, I am in the same dilemma as you. I had my surgery for the slings and folds at age 6 and I remembered everything negative about it. This is the reason why I am reluctant to put my daughter through the surgeries. She is 7 months and so far her vision is not being compromised due to the small opening. My husband and I are prolonging the surgery as much as we can until she is older where she can use her own tissue leg vs doing a temporary sling using synthetics and re-do the surgery when she is older. Her dr. wanted us to do the surgery right away, but I questioned her...if her vision is fine, why put her through surgery at a young age? So, now we are doing follow up check up on her vision every 10 weeks. And the good news is that her opening has gotten bigger as she is growing. Bottom line, in my opinion, if Halle's vision isn't being compromised and she is crawling without lifting her chin up, I suggest to wait as much as you both can and maybe put her through the surgery before school age. Well at least that is my plans for my daughter. Hope this helps. Min > > Okay, y'all, I have permanently moved a box of Kleenex beside the > computer!! Your posts and the response is just overwhelming. I cannot > even begin to describe how each and every one of you has touched my > heart and opened my eyes. Its made me realize that my daughter is a > wonderful gift and no physical characteristic will change who she is > or how special she is to me. I know I need to be proud of who she is > and not let other peoples rudeness keep me and my daughter from > enjoying life. I have hidden her - I have to be brutally honest - I > have kept her from the outside world. At this stage, I had done so > much more with my son and daughter - play groups, swimming, etc. But > with Halle, I just wanted it to be us - safely tucked away in our > home. > > Well - with your help, I know I can change my attitude about this. I > feel such a weight lifted already. We can do this! > > I have one question - well no, that's a lie - I have a trillion > questions but one to ask right now...of the posts I've read, it seems > that the majority of surgeries have been done at a relatively young > age? Who determines this? Does it depend on the severity of BPES? Or > is it just up to individuals? If Halle's sight is not impaired, then > would it be better to wait? The only thing I keep thinking is that > the younger a child is, the less they will remember about the > surgery...is it more traumatic for them at later ages? > > Well - again - thank you all. If I can help one person on this site > someday the way you have helped me, then I will be very happy! > > Will chat soon, > Donna > > PS ~ The pics of your children are beautiful. Its just so neat to see > other kids with this. Its like they are all Halle's siblings in some > way because they have this common characteristic!! Hugs! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Donna, When a surgery is done varies from person to person, doctor to doctor. I had my surgeries when i was 6 and older. My oldest son had his first surgery when he was 5 and his 2nd when he was 6. My youngest however had a worse case and had his first one when he was 5 months. He is 6 now and has had a total of 5 surgeries. My surgeon has told me that the longer they wait the better the results. I know how frustrating it is when all you want is to get the surgeries started and the surgeons saying not yet. My youngest son still needs to have another, but the surgeon said that he won't do it until he's a teenager. How much older are you talking when you ask about it being more traumatic? My oldest son is now 11 and he doesn't even remember having surgery when he was 6. He even had hernia surgery a few years ago and he doesn't really remember much about that one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 > > > > Okay, y'all, I have permanently moved a box of Kleenex beside the > > computer!! Your posts and the response is just overwhelming. I > cannot > > even begin to describe how each and every one of you has touched > my > > heart and opened my eyes. Its made me realize that my daughter is > a > > wonderful gift and no physical characteristic will change who she > is > > or how special she is to me. I know I need to be proud of who she > is > > and not let other peoples rudeness keep me and my daughter from > > enjoying life. I have hidden her - I have to be brutally honest - > I > > have kept her from the outside world. At this stage, I had done so > > much more with my son and daughter - play groups, swimming, etc. > But > > with Halle, I just wanted it to be us - safely tucked away in our > > home. > > > > Well - with your help, I know I can change my attitude about this. > I > > feel such a weight lifted already. We can do this! > > > > I have one question - well no, that's a lie - I have a trillion > > questions but one to ask right now...of the posts I've read, it > seems > > that the majority of surgeries have been done at a relatively > young > > age? Who determines this? Does it depend on the severity of BPES? > Or > > is it just up to individuals? If Halle's sight is not impaired, > then > > would it be better to wait? The only thing I keep thinking is that > > the younger a child is, the less they will remember about the > > surgery...is it more traumatic for them at later ages? > > > > Well - again - thank you all. If I can help one person on this > site > > someday the way you have helped me, then I will be very happy! > > > > Will chat soon, > > Donna > > > > PS ~ The pics of your children are beautiful. Its just so neat to > see > > other kids with this. Its like they are all Halle's siblings in > some > > way because they have this common characteristic!! Hugs! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Hi , Thanks for your reply. I guess I was thinking of 5 or 6 as a more traumatic time. That is when the plastic surg we saw figured it would be done. I just want to do the right thing. Halle doesn't appear to have any problems seeing and doesn't lift her head to see better as I've read in different cases. She hasn't started crawling yet - hates on her belly. I found it interesting to read that Bleph babies don't like on their bellies because they can't see as well - so that makes sense. So if she can wait, then I guess I will learn to be patient as well - if that's in her best interest. Thanks again for your post! Donna > Donna, > > When a surgery is done varies from person to person, doctor to doctor. I > had my surgeries when i was 6 and older. My oldest son had his first > surgery when he was 5 and his 2nd when he was 6. My youngest however had a > worse case and had his first one when he was 5 months. He is 6 now and has > had a total of 5 surgeries. My surgeon has told me that the longer they > wait the better the results. I know how frustrating it is when all you want > is to get the surgeries started and the surgeons saying not yet. My > youngest son still needs to have another, but the surgeon said that he won't > do it until he's a teenager. How much older are you talking when you ask > about it being more traumatic? My oldest son is now 11 and he doesn't even > remember having surgery when he was 6. He even had hernia surgery a few > years ago and he doesn't really remember much about that one. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Hi again Donna, Our Dr told us from the beginning that the reason they like to wait as long as possible on surgery, is because childrens faces grow and change so much, waiting for there face to mature and grow will give much better results, BUT, every child is different, and yes, depending on the severity of the bleph, is the real determination of when surgery should be performed. Plus doing the permanent ptosis lift, using there own fascia lata, from there leg, can't be used until they are about 5 or so, as it isn't matured enough until that age, that is why they will use a synthetic material in the meantime for ptosis lift's, unless you have donor fascia lata. Leanne:) -- blepharophimosis Now its a flood!!! Okay, y'all, I have permanently moved a box of Kleenex beside the computer!! Your posts and the response is just overwhelming. I cannot even begin to describe how each and every one of you has touched my heart and opened my eyes. Its made me realize that my daughter is a wonderful gift and no physical characteristic will change who she is or how special she is to me. I know I need to be proud of who she is and not let other peoples rudeness keep me and my daughter from enjoying life. I have hidden her - I have to be brutally honest - I have kept her from the outside world. At this stage, I had done so much more with my son and daughter - play groups, swimming, etc. But with Halle, I just wanted it to be us - safely tucked away in our home. Well - with your help, I know I can change my attitude about this. I feel such a weight lifted already. We can do this! I have one question - well no, that's a lie - I have a trillion questions but one to ask right now...of the posts I've read, it seems that the majority of surgeries have been done at a relatively young age? Who determines this? Does it depend on the severity of BPES? Or is it just up to individuals? If Halle's sight is not impaired, then would it be better to wait? The only thing I keep thinking is that the younger a child is, the less they will remember about the surgery...is it more traumatic for them at later ages? Well - again - thank you all. If I can help one person on this site someday the way you have helped me, then I will be very happy! Will chat soon, Donna PS ~ The pics of your children are beautiful. Its just so neat to see other kids with this. Its like they are all Halle's siblings in some way because they have this common characteristic!! Hugs! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Tonnika, Are rods the same as silicone slings. my son aedan has the slings since three months and they work great. we do live by the ocean in ny so the moisture probably does help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 --- you know what i actually do not know if slings and rods are the same, or if that is just terminology, i do know that some slings and/or rods have different shapes examples 2 different ones my doctor showed me are cylander shaped and one was like a j shape kind of like a hook...... if anyonone else knows please feel free to let us both know... if not then when i go to work ( the hospital ) i can try and find out. In blepharophimosis , rainamint@a... wrote: > Tonnika, > Are rods the same as silicone slings. my son aedan has the slings > since three months and they work great. we do live by the ocean in ny so the > moisture probably does help. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Donna.. Ethan had his surgery at 2 and he was great with it all. He even kept them bandaged all night with no problem. It is amazing how children just cope and bounce back without too much trouble... and so far he has had no more surgerys.. He is 5 now.. blepharophimosis Now its a flood!!! Okay, y'all, I have permanently moved a box of Kleenex beside the computer!! Your posts and the response is just overwhelming. I cannot even begin to describe how each and every one of you has touched my heart and opened my eyes. Its made me realize that my daughter is a wonderful gift and no physical characteristic will change who she is or how special she is to me. I know I need to be proud of who she is and not let other peoples rudeness keep me and my daughter from enjoying life. I have hidden her - I have to be brutally honest - I have kept her from the outside world. At this stage, I had done so much more with my son and daughter - play groups, swimming, etc. But with Halle, I just wanted it to be us - safely tucked away in our home. Well - with your help, I know I can change my attitude about this. I feel such a weight lifted already. We can do this!I have one question - well no, that's a lie - I have a trillion questions but one to ask right now...of the posts I've read, it seems that the majority of surgeries have been done at a relatively young age? Who determines this? Does it depend on the severity of BPES? Or is it just up to individuals? If Halle's sight is not impaired, then would it be better to wait? The only thing I keep thinking is that the younger a child is, the less they will remember about the surgery...is it more traumatic for them at later ages?Well - again - thank you all. If I can help one person on this site someday the way you have helped me, then I will be very happy!Will chat soon,DonnaPS ~ The pics of your children are beautiful. Its just so neat to see other kids with this. Its like they are all Halle's siblings in some way because they have this common characteristic!! Hugs! Quote Link to comment Share on other sites More sharing options...
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