Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi all, Took Abbie for her first Moorfields appt with Mr Collin last week. Just wanted to say thanks to all who offered encouragement to get a second opinion especially at the London meeting in september. I was feeling a bit selfish - like a pushy mum before but I'm glad I got Abbie down there now. I had been told that it would be left 'til she was pre-school but I was really worried about her development. Mr Collin said she needs her operation (slings) ASAP and she's having it in London now so I'm quite relieved. It was odd in a way though because I'm more used to having decisions discussed with me and he kind of said right this is what we have to do but that's OK. Anyway after meeting everyone in September including Holly who looked great so soon after hers, I'm much less nervous about her op now. Take care all, talk soon. Leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi Leah Tha's really good news for you and Abbie. Have to say we found Mr Collin a bit like that too, but he is so nice too. Keep us all informed about how you get on. Caroline, Neil & Todd UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Hi Leah So sorry I haven't been in touch sooner, especially to e-mail the pics to you, how bad am I??!! I am so pleased your appointment with Mr Collin went well and it definitely helps when you have a clear view with what willl be happening with Abbie in the future. It feels quite a weight has been lifted off your shoulders. Everything will be just fine and Abbie will really benefit from the operation. As the weeks have passed Holly has just got more and more confident with running around and attempting to go up and down slides all by herself!! She appears a lot happier too and loves to point out birds flying overhead which she never noticed before. No-one stares or comments anymore either which is a refreshing change. Keep me updated on when Abbies operation date is. Give Abbie a big kiss from me, Garry and Holly. I will send you the photos direct as soon as I can grab Garry to show me how to do it, how sad!! Take care and it was lovely to meet you and your sister in London, and of course the beautiful Abbie. Love Lucyxxxleara27 <leara27@...> wrote: Hi all, Took Abbie for her first Moorfields appt with Mr Collin last week. Just wanted to say thanks to all who offered encouragement to get a second opinion especially at the London meeting in september. I was feeling a bit selfish - like a pushy mum before but I'm glad I got Abbie down there now. I had been told that it would be left 'til she was pre-school but I was really worried about her development. Mr Collin said she needs her operation (slings) ASAP and she's having it in London now so I'm quite relieved. It was odd in a way though because I'm more used to having decisions discussed with me and he kind of said right this is what we have to do but that's OK. Anyway after meeting everyone in September including Holly who looked great so soon after hers, I'm much less nervous about her op now. Take care all, talk soon.Leah All New – Tired of Vi@gr@! come-ons? Let our SpamGuard protect you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Hi Caroline, Neil and Todd, Lovely to hear from you. Yes, Mr Collin is really nice - I didn't feel that I couldn't ask questions if I wanted to. I do feel very confident in his ability. I suppose it's partly because some other doctors have seemed quite wary of me that I felt that way. When Abbie was in the special baby unit they often used to be very careful the way they spoke to me when I just wanted to be treated as a mum, only some doctors though - the nurses didn't ever do it funnily enough. Once I asked about the progress of a test that had been mentioned a few weeks earlier. A couple of days later I overheard the doctors discussing the result and saying " oh you better tell her the result straight away because she insisted it was done " . It really upset me actually because i didn't say that at all and felt like they were thinking i was pushy for being concerned about my own baby. it didn't help that the result wasn't normal and I found out the result from overhearing it! In any case we've got a date for her op already in Jan so I've got fingers crossed for no cancellations! Did you make the decision to wait for Todd's op's or was it advised by his doctors? In any case he's clearly doing great and it was lovely to meet you all, if briefly. I hope we won't be so late for the next meeting! Take care all, Leah and Abbie > > Hi Leah > > Tha's really good news for you and Abbie. Have to say we found Mr > Collin a bit like that too, but he is so nice too. Keep us all > informed about how you get on. > > Caroline, Neil & Todd > UK > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Hi Lucy, Don't worry about the photo's. That's not that bad. I am completely computer illiterate and rubbish at checking my e-mail. I still haven't worked out why everyone else has a little cross next to the user name and I don't! I'm looking foward to seeing them when you can get Garry to post it! You're right it's a huge relief to have a plan for Abbie's op sorted. Thanks for your words of encouragement. You also don't know how much better it made me feel to meet gorgeous Holly so thank you for bringing her. I'm happy to hear she's doing so well! Actually they've sent a date already for the 8th Jan which is sooner than I expected. I've spent today trying to sort out the time off which was a total faff! Luckily i think it's sorted now. Better go as I've got to get up at 6 but talk to you soon. Be sure to let me know how you and Holly are getting on. Love to all, Leah and Abbie x x T > Hi all, > > Took Abbie for her first Moorfields appt with Mr Collin last week. > Just wanted to say thanks to all who offered encouragement to get a > second opinion especially at the London meeting in september. I was > feeling a bit selfish - like a pushy mum before but I'm glad I got > Abbie down there now. I had been told that it would be left 'til she > was pre-school but I was really worried about her development. Mr > Collin said she needs her operation (slings) ASAP and she's having it > in London now so I'm quite relieved. It was odd in a way though > because I'm more used to having decisions discussed with me and he > kind of said right this is what we have to do but that's OK. Anyway > after meeting everyone in September including Holly who looked great > so soon after hers, I'm much less nervous about her op now. > > Take care all, talk soon. > > Leah > > > > > > > --------------------------------- > All New – Tired of Vi@gr@! come-ons? Let our SpamGuard protect you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Hi Leah Well that's quick and really good news - Good Luck! We made the decision to wait for Todd to have any ops - hopefully he'll be able to make that decision for himself when he's older. Currently his vision isn't being affected so we've left it. But Mr Collin is happy to operate, so if he has social problems for example when he starts school we can just go back to him. In the meantime we just have vision checks every 6 months, at our local hospital. Best Wishes Caroline Kent UK --- In blepharophimosis , " leara27 " <leara27@...> wrote: > > Hi Caroline, Neil and Todd, > > > In any case we've got a date for her op already in Jan so I've got > fingers crossed for no cancellations! Did you make the decision to > wait for Todd's op's or was it advised by his doctors? In any case > he's clearly doing great and it was lovely to meet you all, if > briefly. I hope we won't be so late for the next meeting! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Hi Micheline,Our surgeon, Dr. Katowitz from CHOP, recommended putting on "Scarless" a topical gel. You can buy it on line and it has been fantastic. We put it on twice a day.Thanks,TawnyaOn Sep 4, 2010, at 4:38 AM, mkabrita wrote: Hi, My daughter Giuliana had her first surgery yesterday, correction of the epicanthal fold. Everything went well and today she seems back to her usual self. I would greatly appreciate any advice on what to do next to avoid scarring or any other advice on the matter. I was given an antibiotic cream to put 4 times a day for ten days. How long does it take to heal? The surgeon had very litle time to talk, so I am left with some unanswered questions. Thank you for your help! Micheline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Hello, make certain that your child doesn't try to pick at the stitches to prevent further scarring and possibl infection. Our daughter had the same surgery in feruary and she picked at her stiches until i taped socks to her arms and hands to prevent her. Because of her picking, she has noticable scarring on the inner corners of her eyelids. Hope this helps. Matt and .mary blepharophimosis First surgery Hi, My daughter Giuliana had her first surgery yesterday, correction of the epicanthal fold. Everything went well and today she seems back to her usual self. I would greatly appreciate any advice on what to do next to avoid scarring or any other advice on the matter. I was given an antibiotic cream to put 4 times a day for ten days. How long does it take to heal? The surgeon had very litle time to talk, so I am left with some unanswered questions. Thank you for your help! Micheline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 Our doctor gave us something called Kelocote after the last surgery. Worked great! Ann Thornton Colorado From: mkabrita <mkabrita@...>blepharophimosis Sent: Sat, September 4, 2010 4:38:57 AMSubject: blepharophimosis First surgery Hi,My daughter Giuliana had her first surgery yesterday, correction of the epicanthal fold. Everything went well and today she seems back to her usual self. I would greatly appreciate any advice on what to do next to avoid scarring or any other advice on the matter. I was given an antibiotic cream to put 4 times a day for ten days. How long does it take to heal? The surgeon had very litle time to talk, so I am left with some unanswered questions.Thank you for your help!Micheline Quote Link to comment Share on other sites More sharing options...
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