Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Hi All the very best for Kirstens surgery, we will all be thinking of you! We still haven't got a new date through for Hollys 1st operation, as Holly was ill for her first one, so lets hope it is not long. We haven't been told of the new policy as yet. We were allowed to stay over for the first scheduled one a few weeks ago but maybe we will be notified that we can't on the next date. Wait and see. The only thing is when you are travellling a long way it is best for the child to stay over. We can always stay with a friend or go to a hotel I suppose if not!! Take care and please let us know how you get on. Love Lucy xx <parsonsfamily108@...> wrote: Hi allHope everyone is in good health and enjoying the summer (on this side of the equator of course). Kirsten (3) is having her Y-V canthoplasty done by Mr Collin in 9 days time on the 27th. She is having it done at Harley St Clinic as opposed to Moorfields because that is where he can fit her in. We will stay for 1 night in hospital and drive back to Yorkshire the next day. The surgery could not have come at a better time as Kirst is now expressing that she wants big eyes like me. We never bring attention to her differences so were quite surprised at her recent comments.Mr Collin's secretary tells me that at Moorfields Hospital, policies on day case surgery have changed and now BPES kids go home the day of surgery. Is this anyones recent experience and how do parents feel about this?Kirsten has also seen a geneticist from Leeds as she has problems with her soft palate resulting in speech difficulties. I have been assured that there is no link between typical BPES and palatal problems by 2 genetics consultants, one of them being Dr Oley from Birmingham. (Shireen, you gave me her name a while ago, thanks). It is an unfortunate coincidence that Kirsten has 2 independent problems. The point I initially wanted to make is that she is having FOXL2 studies done by the (now famous amongst us lot) lab in Belgium to confirm BPES and hopefully type it. So the long and patient wait for that result has begun.Please keep Kirsten in your thoughts. I will let you know how she gets on.Regards Parsons The all-new goes wherever you go - free your email address from your Internet provider. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Hi, Good luck on the op!!! Our son Ethan is also 3 years old...he has had no op's yet...not til about 4 or 5? We would love to see before and after pix of kirsten when all is done....Good luck:) leanne and family NZ -- blepharophimosis Kirsten surgery Hi allHope everyone is in good health and enjoying the summer (on this side of the equator of course). Kirsten (3) is having her Y-V canthoplasty done by Mr Collin in 9 days time on the 27th. She is having it done at Harley St Clinic as opposed to Moorfields because that is where he can fit her in. We will stay for 1 night in hospital and drive back to Yorkshire the next day. The surgery could not have come at a better time as Kirst is now expressing that she wants big eyes like me. We never bring attention to her differences so were quite surprised at her recent comments.Mr Collin's secretary tells me that at Moorfields Hospital, policies on day case surgery have changed and now BPES kids go home the day of surgery. Is this anyones recent experience and how do parents feel about this?Kirsten has also seen a geneticist from Leeds as she has problems with her soft palate resulting in speech difficulties. I have been assured that there is no link between typical BPES and palatal problems by 2 genetics consultants, one of them being Dr Oley from Birmingham. (Shireen, you gave me her name a while ago, thanks). It is an unfortunate coincidence that Kirsten has 2 independent problems. The point I initially wanted to make is that she is having FOXL2 studies done by the (now famous amongst us lot) lab in Belgium to confirm BPES and hopefully type it. So the long and patient wait for that result has begun.Please keep Kirsten in your thoughts. I will let you know how she gets on.Regards Parsons Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Hi , That's wonderful news! We are very excited for you and Kirsten we wish you and Kirsten all the very best. Take good care of yourselves and rest assured, Kirsten will be in our thoughts and prayers. Hugs to all. > Hi all > > Hope everyone is in good health and enjoying the summer (on this > side of the equator of course). > > Kirsten (3) is having her Y-V canthoplasty done by Mr Collin in 9 > days time on the 27th. She is having it done at Harley St Clinic as > opposed to Moorfields because that is where he can fit her in. We > will stay for 1 night in hospital and drive back to Yorkshire the > next day. The surgery could not have come at a better time as Kirst > is now expressing that she wants big eyes like me. We never bring > attention to her differences so were quite surprised at her recent > comments. > > Mr Collin's secretary tells me that at Moorfields Hospital, policies > on day case surgery have changed and now BPES kids go home the day > of surgery. Is this anyones recent experience and how do parents > feel about this? > > Kirsten has also seen a geneticist from Leeds as she has problems > with her soft palate resulting in speech difficulties. I have been > assured that there is no link between typical BPES and palatal > problems by 2 genetics consultants, one of them being Dr Oley from > Birmingham. (Shireen, you gave me her name a while ago, thanks). It > is an unfortunate coincidence that Kirsten has 2 independent > problems. The point I initially wanted to make is that she is having > FOXL2 studies done by the (now famous amongst us lot) lab in Belgium > to confirm BPES and hopefully type it. So the long and patient wait > for that result has begun. > > Please keep Kirsten in your thoughts. I will let you know how she > gets on. > > Regards > Parsons > > > > > > > --------------------------------- > The all-new goes wherever you go - free your email address from your Internet provider. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 Hi We will keep Kirsten in our prayers. We too have been told there is no overnight stay in moorfields. I am still trying to see if I can stay privately as I will not want to take Tina home too early. My older daughter suffered an adverse reaction to the drugs the last time we were in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 , So glad to hear little Kirsten is doing so well! Regarding the scars - I remember Micah's still looked really red 4 months after his YV Canthoplasty. But a year later they were completely faded and the eyes had " balanced " more by then too. But he had slings done at the same time so that may have effected the swelling - I'm not sure. You can see his pictures under " Eisele Family " . Again, so glad to hear she did well. April --- <parsonsfamily108@...> wrote: > Hi all > > Wow, I've had to catch up on a lot of news since I > last posted! What > fabulous discussions there have been lately. > > Welcome to all the new members. I am sure you will > find this group > as supportive and helpful as I have. To fill you in > on my story, my > daughter, Kirsten (3yrs) is the first and only > person in our family > to have BPES. She was born in South Africa and we > moved to the UK > when she was 1 year old. Mr Collin at Moorfields Eye > Hospital in > London was recommended to us by 2 surgeons in RSA, > one was a plastic > surgeon and the other her ophthalmologist. So his > reputation spreads > far. Although we now live in North Yorkshire, we > still travel to > London for Kirsten's check-ups and surgery. Her > photos are > under 'Kirsten Parsons' and I will post some new > ones soon. > > A big thank you for all the kind words and prayers > for Kirsten > recently. She had her Y-V canthoplasty done on Tues, > 27th and it > went very well. We found out that one of her tear > ducts is not > patent which surprised us as she has never had > watery eyes. Her eyes > are still fairly swollen but improving. She was up > and about as > normal the next day and today has been asking to go > to nursery > school! > > I have been warned by Mr Collin that she will look > worse before she > looks better. He said that the scars will look > particularly red > about 3 months after surgery and we will appreciate > the result after > six months. It certainly took six months for her > eyes to settle > after her lid lift. > > Regards > P > > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Hi So pleased to hear everything has gone well with Kirstens surgery, what a relief for you. I hope you can come along to the next BPES meeting in September so we can see how great Kirsten looks. We finally have another date for Hollys surgery which is Monday 4th September. Lets hope she is well enough for this one!! I called the childrens ward at Moorfields to ask about staying over and they said it is fine to stay over on the night of the operation. We were relieved to get this answer because we were trying to think of other options. I think that they just don't allow you to stay over the night before the operation but only on the night of the operation?? Holly would have had the surgery before the get-together too which will be good. Take care of yourselves and hope to see you soon - give Kirsten a big 'well done' kiss for being a brave little girl. Love Lucyxx <parsonsfamily108@...> wrote: Hi allWow, I've had to catch up on a lot of news since I last posted! What fabulous discussions there have been lately.Welcome to all the new members. I am sure you will find this group as supportive and helpful as I have. To fill you in on my story, my daughter, Kirsten (3yrs) is the first and only person in our family to have BPES. She was born in South Africa and we moved to the UK when she was 1 year old. Mr Collin at Moorfields Eye Hospital in London was recommended to us by 2 surgeons in RSA, one was a plastic surgeon and the other her ophthalmologist. So his reputation spreads far. Although we now live in North Yorkshire, we still travel to London for Kirsten's check-ups and surgery. Her photos are under 'Kirsten Parsons' and I will post some new ones soon.A big thank you for all the kind words and prayers for Kirsten recently. She had her Y-V canthoplasty done on Tues, 27th and it went very well. We found out that one of her tear ducts is not patent which surprised us as she has never had watery eyes. Her eyes are still fairly swollen but improving. She was up and about as normal the next day and today has been asking to go to nursery school!I have been warned by Mr Collin that she will look worse before she looks better. He said that the scars will look particularly red about 3 months after surgery and we will appreciate the result after six months. It certainly took six months for her eyes to settle after her lid lift.Regards P To help you stay safe and secure online, we've developed the all new Security Centre. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Hi , Kirsten and family, It's great to hear that the surgery went well. I can't wait to see her. I'll give you a ring next week. We were up at the hospital today for the doctors exams. Two of them didn't even mention Graces eyes - Oh dear. I'll catch up later Nicola and Grace <parsonsfamily108@...> wrote: Hi all Wow, I've had to catch up on a lot of news since I last posted! What fabulous discussions there have been lately. Welcome to all the new members. I am sure you will find this group as supportive and helpful as I have. To fill you in on my story, my daughter, Kirsten (3yrs) is the first and only person in our family to have BPES. She was born in South Africa and we moved to the UK when she was 1 year old. Mr Collin at Moorfields Eye Hospital in London was recommended to us by 2 surgeons in RSA, one was a plastic surgeon and the other her ophthalmologist. So his reputation spreads far. Although we now live in North Yorkshire, we still travel to London for Kirsten's check-ups and surgery. Her photos are under 'Kirsten Parsons' and I will post some new ones soon. A big thank you for all the kind words and prayers for Kirsten recently. She had her Y-V canthoplasty done on Tues, 27th and it went very well. We found out that one of her tear ducts is not patent which surprised us as she has never had watery eyes. Her eyes are still fairly swollen but improving. She was up and about as normal the next day and today has been asking to go to nursery school! I have been warned by Mr Collin that she will look worse before she looks better. He said that the scars will look particularly red about 3 months after surgery and we will appreciate the result after six months. It certainly took six months for her eyes to settle after her lid lift. Regards P Copy addresses and emails from any email account to - quick, easy and free. Do it now... Quote Link to comment Share on other sites More sharing options...
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