Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Hi Leah, Oh my God, that description of what a 'Syndrome' is...... I just LOVE it!! Thank you so much for sending it on, I have written it down, and I have to say, I think it's just cool! People do get hung up on big fancy words and terms, a lot of the time I suppose its fear and ignorance, sometimes its inconsideration, and then sometimes, I think... it's just doctors trying to make themselves feel important!! - The bigger and more confusing the name something is, the more important they sound! Maybe that's just my experience of some of the doctors I have met, so sorry if I sound a bit cynical!!! I am not typically by nature, but I suppose when it comes to my kids, I have to admit, I am a bit over-protective!!! But sure most of us parents are I suppose ;0)) Thanks so much for your mail, it really cheered me up, and now I have a brill description, which I will have great fun telling everyone what a 'Syndrome' is!! I have a big family christening coming up tomorrow, which I was initally dreading, as I couldn't bear the thoughts of everyone saying 'Oh Poor ' which I am sure they will... But I have to just stick out my chin, and tell them she is 'Fine' ! And accept that is just some peoples way of trying to be nice! Anyways, best run, thanks again, hope you have a fantastic weekend, and look forward to talking to you soon. x Re: blepharophimosis Ireland anyone?> > > I have a 2 month old daughter named samantha who has Bleph she was diagnosed at the hospital the day after she was born we then took her to so a specialist i thought it would be best for her to have surgery as early as possible but the dr told us that we need to wait until she was at least 3 because her muscle in her face are not fully formed and he would have to redue the surgery when she got older he said the only way they would do the surgery now is if she started losing her eye sight which thank god she hasn't being that we don't want to put our daughter through any more surgery than necessary we opted to sit back and wait. My husband also has bleph and he surgeon took the same route with him and his eyes turned out great. So hopefully that is a sign that we are doing what is best for our baby. I hope all this has helped > > (OHIO USA) > > > ____________ _________ _________ _________ _________ _________ _________ ______> Try Juno Platinum for Free! Then, only $9.95/month!> Unlimited Internet Access with 1GB of Email Storage.> Visit http://www.juno. com/value to sign up today!> > > > Send instant messages to your online friends http://uk.messenger .> Send instant messages to your online friends http://uk.messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2006 Report Share Posted November 13, 2006 Hi Leah, Thanks so much for your reply, sorry for my delay in getting back to you too! We went away for the weekend, so it was all go here the past week! The christening went really, really well! I was surprised how delighted everyone was to see us, and they all made a huge fuss over ! No one really commented on her eyes and kept saying how fab she was! I suppose you see, the baby whose christening it was - my youngest cousin's child, had just been through the mill with surgery, she was born by emergency section and rushed to hospital for a blockage in the bowel, so funnily enough, 's issues, paled into comparrison, and I found that after what had happened to the new baby - Holly, that my cousins were much more open, calm and laid back I suppose, about having anything wrong with her! So all in all, I was delighted we went, I think they would have had 'assumptions' as to her being different or being ill, if I hadn't of brought her, and at least by going, it was showing them and me that she is just a beautiful little girl, that LOVES attention!!! She was in her element with everyone looking at her and playing with her, she's a scream! But I have to tell you about today..... I booked a window cleaner to call to my house, and I don't know about in the UK, but typically in Ireland... Irish window cleaners for some reason, tend to be very over friendly!!! Anyway - the guy calls to the door, and I have in my arms, and he says "Oh wow missus, lets see your baby" so I turn her to face him and he says "Jaysus her eyes are bleeding tiny" (hee hee - you have to try repeating that one with an irish accent!) So I just laughed, and he went red in the face and said "oh God, have I put my foot in it? Is there like.. something wrong with her?" to which I quite proudly replied, "No, thank you, she's quite perfect actually!" and I left it at that! So I think I am actually developing a bit of a sense of humour about it all. My son , whose 6 has a condition called Urticaria, and his version of it happens when he gets cold - he gets massive red bumps - like nettle stings all over his face! Once when we were out, someone actually pointed to him, from across the park and said "Oh my god, look at that poor boy" So I suppose I should be used to peoples comments on things they haven't seen before. is none the wiser about anyones comments or feelings about him, he's far too confident after years of being told (by me of course, hee hee!) how beautiful he is! He just says sometimes... "oh Mam, I have my cold bumps again!" But as they dont itch or bother him, he just gets on with it. So I have and all the different things he has had to contend with as inspiration as to how adaptable kids are, and it also makes me realise, that we all have our differences... all the kids in my family have something! My sisters currently going through the mill with her daughter and her dyslexia! My other sisters child is seriously overweight, and the other sister's son wont eat!.... Sorry for the long winded reply.... I suppose I am, especially through this groups help, and well I suppose the realisation of everyday life, to accept, take things one step at a time and just well... get on with it, and be greatful! We are still waiting on the surgeons apointment, hopefully it will come soon, and we can get down to some planning for . I think we will most probably end up waiting until she is older, as she deffinitely has no sight problems, she follows me all around the room and watches everything! She is so curious and cute, she is developing much faster than my son did (clever girls eh!!) and so unless the surgeon thinks it will be really beneficial in the long term, I think we will try to wait. I am dying to hear how Abbie gets on at her Jan operation, I will be thinking of you that day!! Please let me know how it all goes! Fingers crossed you can go in and out on the same day... and you never know, get some London shopping in too!! Take care and keep in touch! xx Re: blepharophimosis Ireland anyone?> > > > > > I have a 2 month old daughter named samantha who has Bleph she was > diagnosed at the hospital the day after she was born we then took > her to so a specialist i thought it would be best for her to have > surgery as early as possible but the dr told us that we need to wait > until she was at least 3 because her muscle in her face are not > fully formed and he would have to redue the surgery when she got > older he said the only way they would do the surgery now is if she > started losing her eye sight which thank god she hasn't being that > we don't want to put our daughter through any more surgery than > necessary we opted to sit back and wait. My husband also has bleph > and he surgeon took the same route with him and his eyes turned out > great. So hopefully that is a sign that we are doing what is best > for our baby. I hope all this has helped > > > > (OHIO USA) > > > > > > ____________ _________ _________ _________ _________ _________ > _________ ______> > Try Juno Platinum for Free! Then, only $9.95/month!> > Unlimited Internet Access with 1GB of Email Storage.> > Visit http://www.juno. com/value to sign up today!> > > > > > > > Send instant messages to your online friends > http://uk.messenger .> >> > > > > Send instant messages to your online friends http://uk.messenger .> Send instant messages to your online friends http://uk.messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 Hey , its Clare - herts - UK. WELL DONE YOU!! This goes far beyond the restrictions of BPES!! and thats exactly the response you need to give people when they make comments, you are absolutely right if we fill our kids with confidence about life, it doesnt matter what they deal with or why they deal with it, if we give them the tools to deal with any situation confidently with a big smile and a sense of humour, the world would be an amazing place to live. I think you are amazing - well done - keep going. Clare lisa obrien <hplisaobr@...> wrote: Hi Leah, Thanks so much for your reply, sorry for my delay in getting back to you too! We went away for the weekend, so it was all go here the past week! The christening went really, really well! I was surprised how delighted everyone was to see us, and they all made a huge fuss over ! No one really commented on her eyes and kept saying how fab she was! I suppose you see, the baby whose christening it was - my youngest cousin's child, had just been through the mill with surgery, she was born by emergency section and rushed to hospital for a blockage in the bowel, so funnily enough, 's issues, paled into comparrison, and I found that after what had happened to the new baby - Holly, that my cousins were much more open, calm and laid back I suppose, about having anything wrong with her! So all in all, I was delighted we went, I think they would have had 'assumptions' as to her being different or being ill, if I hadn't of brought her, and at least by going, it was showing them and me that she is just a beautiful little girl, that LOVES attention!!! She was in her element with everyone looking at her and playing with her, she's a scream! But I have to tell you about today..... I booked a window cleaner to call to my house, and I don't know about in the UK, but typically in Ireland... Irish window cleaners for some reason, tend to be very over friendly!!! Anyway - the guy calls to the door, and I have in my arms, and he says "Oh wow missus, lets see your baby" so I turn her to face him and he says "Jaysus her eyes are bleeding tiny" (hee hee - you have to try repeating that one with an irish accent!) So I just laughed, and he went red in the face and said "oh God, have I put my foot in it? Is there like.. something wrong with her?" to which I quite proudly replied, "No, thank you, she's quite perfect actually!" and I left it at that! So I think I am actually developing a bit of a sense of humour about it all. My son , whose 6 has a condition called Urticaria, and his version of it happens when he gets cold - he gets massive red bumps - like nettle stings all over his face! Once when we were out, someone actually pointed to him, from across the park and said "Oh my god, look at that poor boy" So I suppose I should be used to peoples comments on things they haven't seen before. is none the wiser about anyones comments or feelings about him, he's far too confident after years of being told (by me of course, hee hee!) how beautiful he is! He just says sometimes... "oh Mam, I have my cold bumps again!" But as they dont itch or bother him, he just gets on with it. So I have and all the different things he has had to contend with as inspiration as to how adaptable kids are, and it also makes me realise, that we all have our differences... all the kids in my family have something! My sisters currently going through the mill with her daughter and her dyslexia! My other sisters child is seriously overweight, and the other sister's son wont eat!.... Sorry for the long winded reply.... I suppose I am, especially through this groups help, and well I suppose the realisation of everyday life, to accept, take things one step at a time and just well... get on with it, and be greatful! We are still waiting on the surgeons apointment, hopefully it will come soon, and we can get down to some planning for . I think we will most probably end up waiting until she is older, as she deffinitely has no sight problems, she follows me all around the room and watches everything! She is so curious and cute, she is developing much faster than my son did (clever girls eh!!) and so unless the surgeon thinks it will be really beneficial in the long term, I think we will try to wait. I am dying to hear how Abbie gets on at her Jan operation, I will be thinking of you that day!! Please let me know how it all goes! Fingers crossed you can go in and out on the same day... and you never know, get some London shopping in too!! Take care and keep in touch! xx Re: blepharophimosis Ireland anyone?> > > > > > I have a 2 month old daughter named samantha who has Bleph she was > diagnosed at the hospital the day after she was born we then took > her to so a specialist i thought it would be best for her to have > surgery as early as possible but the dr told us that we need to wait > until she was at least 3 because her muscle in her face are not > fully formed and he would have to redue the surgery when she got > older he said the only way they would do the surgery now is if she > started losing her eye sight which thank god she hasn't being that > we don't want to put our daughter through any more surgery than > necessary we opted to sit back and wait. My husband also has bleph > and he surgeon took the same route with him and his eyes turned out > great. So hopefully that is a sign that we are doing what is best > for our baby. I hope all this has helped > > > > (OHIO USA) > > > > > > ____________ _________ _________ _________ _________ _________ > _________ ______> > Try Juno Platinum for Free! Then, only $9.95/month!> > Unlimited Internet Access with 1GB of Email Storage.> > Visit http://www.juno. com/value to sign up today!> > > > > > > > Send instant messages to your online friends > http://uk.messenger .> >> > > > > Send instant messages to your online friends http://uk.messenger .> Send instant messages to your online friends http://uk.messenger. Everyone is raving about the all-new beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2006 Report Share Posted November 23, 2006 Hi Leah and Everyone! Thanks so much for your message Leah, your so right, it's great to stop sometimes and just take stock, as I was initally thinking the same - that we would try to get 'cosmetically' corrected as soon as possible for her sake.. Yet - everytime I bring her anywhere the reaction to her is amazing! People think she is so cute, as she has a small face, aswell as small eyes! I think they kinda suit her to be honest, so I understand where Patsy - your coming from! We all have our differences, and I think once we are confident enough to understand that, life is so much easier. Well we had our first visit with Dr McCreery yesterday! We got a cancellation apointment, so were excited and nervous all at once when we realised we were going to meet the surgeon that would be helping us make decisions about s future. She was fantastic, and gave a really thorough exam. She has recommended we come back in 6 weeks time to see how is progressing. She said that she will need an eyelid lift (ptosis) using slings, as she is concerned about the tilt that is developing to see - in that it might affect her neck, and also that she thinks aprox a 3mm increase in her eye opening with the slings would be beneficial to s vision. So she reckons we should leave it until is almost 1 yr old, but definitely before her 1st Bday. So we were fairly happy when we left as she didnt really say anything negative, and gave us our 1st step of what the future holds for and surgery. She doesn't do the trans-nasal wiring operation, but she thinks won't need that until she is older, and that the priority for now is to protect her vision and watch her neck development. We are back with Dr McCreery on 8th Jan, so I'll keep you posted! She said that she will show me some before and after photos of her recent eyelid surgeries then, so that I can see what we can expect with . She did mention Dr Colin in the UK as a possible reference to see , should she need any further surgeries, so for all of you out there that know him, I am sure I'll be asking lots of questions about him and the hospital procedure etc.. when the time comes. She doesn't have any other BPES patients here in Ireland, so it does seem to be quite rare, but the Ptosis - or eyelid droop condition in children seems to be fairly common, so thankfully she has done tons of the operations! She said it will be done as a day case, and so I am thrilled about that, as I'd crack up if had to stay overnight in hospital! Thanks again to you all for your support and updates, I'll let you know how we get on! x Kildare, Ireland Re: blepharophimosis Ireland anyone?> > > > > > > > > I have a 2 month old daughter named samantha who has Bleph she > was > > diagnosed at the hospital the day after she was born we then took > > her to so a specialist i thought it would be best for her to have > > surgery as early as possible but the dr told us that we need to > wait > > until she was at least 3 because her muscle in her face are not > > fully formed and he would have to redue the surgery when she got > > older he said the only way they would do the surgery now is if she > > started losing her eye sight which thank god she hasn't being that > > we don't want to put our daughter through any more surgery than > > necessary we opted to sit back and wait. My husband also has bleph > > and he surgeon took the same route with him and his eyes turned > out > > great. So hopefully that is a sign that we are doing what is best > > for our baby. I hope all this has helped > > > > > > (OHIO USA) > > > > > > > > > ____________ _________ _________ _________ _________ _________ > > _________ ______> > > Try Juno Platinum for Free! Then, only $9.95/month!> > > Unlimited Internet Access with 1GB of Email Storage.> > > Visit http://www.juno. com/value to sign up today!> > > > > > > > > > > > Send instant messages to your online friends > > http://uk.messenger .> > >> > > > > > > > > > Send instant messages to your online friends > http://uk.messenger .> >> > > > > > > > > Send instant messages to your online friends http://uk.messenger . > > > > > ------------ --------- --------- ---> Everyone is raving about the all-new beta.> Send instant messages to your online friends http://uk.messenger. Quote Link to comment Share on other sites More sharing options...
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