Re: Rylee 2nd surgery

[Guest guest]

Hi Aimee Just thought I would say Hi. My name is Lucy and I have a daughter called Holly who is 2 on Feb 13th. Holly is our first daughter and also the first to have BPES. Holly had her first sling surgery in September at Moorfields Eye Hospital in London which was very successful. Holly is due the next part of operation aged about 3 which is the underneath part of the eye, epicanthus inversus, where it moves the excess skin so you can then see the tearducts. Not sure about the technical terms!!! Where do you live? We live in Hampshire, UK. Take it easy Lucy - Gosport, Hampshire UK aimeenimtz <aimeenimtz@...> wrote: Hi AllI am new to the group, my daughter Rylee was born with BPES on Jan 3, 2005. She has an older sister Sydnee who was not and is 4. Rylee just turned two and is about to have another surgery on her eyelid area by the nose. I don't have the technical term for it yet. She had an eye lift on both eyes when she was six months old. She does wear glasses and has since she was six months. Anyone with advice or experience with the "cutting the eye flap" by the nose surgery would be helpful. Thanks Aimee

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[Guest guest]

Hi, Aimee. I don't usually respond to the group e-mails but Shireen

has just pointed out to me that we share the last name of Nimtz. We

live in Wathena Kansas, my husband was Nimtz, now deceased.

My daughter Elise is 20 and of our two girls was the only one born

with BPES. With an unusual last name, this is maybe more than a

coincidence?(sp?) I would look forward to hearing from you and

where you live. Joan Nimtz--- In

blepharophimosis , " aimeenimtz " <aimeenimtz@...>

wrote:

>

> Hi All

> I am new to the group, my daughter Rylee was born with BPES on Jan

3,

> 2005. She has an older sister Sydnee who was not and is 4. Rylee

just

> turned two and is about to have another surgery on her eyelid area

by

> the nose. I don't have the technical term for it yet. She had an

eye

> lift on both eyes when she was six months old. She does wear

glasses

> and has since she was six months.

>

> Anyone with advice or experience with the " cutting the eye flap "

by the

> nose surgery would be helpful.

>

> Thanks

> Aimee

>

[Guest guest]

Hi Lucy Thanks for the reply. We live in San Diego California. I have pictures of Rylee posted under Rylee Ruby. She had the lid surgery at age 6 months and we should hear on Tuesday about working on the folds by her nose. I think that is the epicathus invertus. I am hoping the surgery will go well as the first was a great success. Hope to hear from you again soon. aimee Lucy Chidgey <lcgosport@...> wrote: Hi Aimee Just thought I would say Hi. My name is Lucy and I have a daughter called Holly who is 2 on Feb 13th. Holly is our first daughter and also the first to have BPES. Holly had her first sling surgery in September at Moorfields Eye Hospital in London which was very successful. Holly is due the next part of operation aged about 3 which is the underneath part of the eye, epicanthus inversus, where it moves the excess skin so you can then see the tearducts. Not sure about the technical terms!!! Where do you live? We live in Hampshire, UK. Take it easy Lucy - Gosport, Hampshire UK aimeenimtz <aimeenimtz > wrote: Hi AllI am new to the group, my daughter Rylee was born with BPES on Jan 3, 2005. She has an older sister Sydnee who was not and is 4. Rylee just turned two and is about to have another surgery on her eyelid area by the nose. I don't have the technical term for it yet. She had an eye lift on both eyes when she was six months old. She does wear glasses and has since she was six months. Anyone with advice or experience with the "cutting the eye flap" by the nose surgery would be helpful. Thanks Aimee What kind of emailer are you? Find out today - get a free analysis of your email personality. Take the quiz at the Championship.

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[Guest guest]

Hi Lucy Thanks for the reply. We live in San Diego California. I have pictures of Rylee posted under Rylee Ruby. She had the lid surgery at age 6 months and we should hear on Tuesday about working on the folds by her nose. I think that is the epicathus invertus. I am hoping the surgery will go well as the first was a great success. Hope to hear from you again soon. aimee Lucy Chidgey <lcgosport@...> wrote: Hi Aimee Just thought I would say Hi. My name is Lucy and I have a daughter called Holly who is 2 on Feb 13th. Holly is our first daughter and also the first to have BPES. Holly had her first sling surgery in September at Moorfields Eye Hospital in London which was very successful. Holly is due the next part of operation aged about 3 which is the underneath part of the eye, epicanthus inversus, where it moves the excess skin so you can then see the tearducts. Not sure about the technical terms!!! Where do you live? We live in Hampshire, UK. Take it easy Lucy - Gosport, Hampshire UK aimeenimtz <aimeenimtz > wrote: Hi AllI am new to the group, my daughter Rylee was born with BPES on Jan 3, 2005. She has an older sister Sydnee who was not and is 4. Rylee just turned two and is about to have another surgery on her eyelid area by the nose. I don't have the technical term for it yet. She had an eye lift on both eyes when she was six months old. She does wear glasses and has since she was six months. Anyone with advice or experience with the "cutting the eye flap" by the nose surgery would be helpful. Thanks Aimee What kind of emailer are you? Find out today - get a free analysis of your email personality. Take the quiz at the Championship.

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[Guest guest]

Hi All Rylee is scheduled on this monday the 18th to have her cantyplasty surgery. We are alittle anxious because now she can say OWEEE!. She also has an appt with her genetisist on April 9th and I will ask about the POF issues discussed here in the group. My understanding from our orignal meetings is that Type 1 is for females only and the POF condition can or cannot occur. But as I said I will get more information . We will be meeting with Dr. Marilyn of Childrens hospital here in San Diego and she is a leader in the field. Wishing you all a great weekend. Aimee macster74 <macster74@...> wrote: My name is Machaela, and I am a new member. I have a 2yr old daughter who was diagnosed @ approx 10mths old. When she was born her eyes were not open, and the doctors tried to force them open. Like , they opened in the following days but with very small openings. We spoke to many different peadiatricions,doctors etc. who seemed very unsure of what the problem was. They assured us that her vision was fine but told us they had not seen of this before. Perhaps that was because we live in a reasonably small city. We were then referred to a specialist in Melbourne(aus!) where they began to suspect BPES but thought she was a little young to diagnose. By the time she was 10mths they were confident that it was BPES. Like you, we

began to search the net to find what we could but, we too found that alot of it was very medical. I am in the nursing field so I could understand some of it but alot was really for surgeons etc. I was delighted to find this group and have found it is a great place for people to share experiences, stories etc but as I was told, the best place to get answers is a health professional. It appears to be a very individual thing. Maybe a geneticist would be someone of benifit for you to talk to, as we found that very benificial. It sounds as if your has other issues involved, but as for me, all I have to offer you is my story, and my own individual experience...Take care! and welcome to the group!

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[Guest guest]

good luck with her surgery and hey it might be a good thing she can say OWEEE as now if it hurts you will actually know it..... anyway hope all goes well, let us knowTonikkaedmonton alberta CANADAOn 16-Mar-07, at 10:15 AM, Aimee Nimtz wrote:Hi All Rylee is scheduled on this monday the 18th to have her cantyplasty surgery. We are alittle anxious because now she can say OWEEE!. She also has an appt with her genetisist on April 9th and I will ask about the POF issues discussed here in the group. My understanding from our orignal meetings is that Type 1 is for females only and the POF condition can or cannot occur. But as I said I will get more information . We will be meeting with Dr. Marilyn of Childrens hospital here in San Diego and she is a leader in the field. Wishing you all a great weekend.Aimee macster74 <macster74 .au> wrote:My name is Machaela, and I am a new member. I have a 2yr old daughter who was diagnosed @ approx 10mths old. When she was born her eyes were not open, and the doctors tried to force them open. Like , they opened in the following days but with very small openings. We spoke to many different peadiatricions,doctors etc. who seemed very unsure of what the problem was. They assured us that her vision was fine but told us they had not seen of this before. Perhaps that was because we live in a reasonably small city. We were then referred to a specialist in Melbourne(aus!) where they began to suspect BPES but thought she was a little young to diagnose. By the time she was 10mths they were confident that it was BPES. Like you, we began to search the net to find what we could but, we too found that alot of it was very medical. I am in the nursing field so I could understand some of it but alot was really for surgeons etc. I was delighted to find this group and have found it is a great place for people to share experiences, stories etc but as I was told, the best place to get answers is a health professional. It appears to be a very individual thing. Maybe a geneticist would be someone of benifit for you to talk to, as we found that very benificial. It sounds as if your has other issues involved, but as for me, all I have to offer you is my story, and my own individual experience...Take care! and welcome to the group!Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. Tonikka & Chrischeck out our blogwww.nottynurse.blogspot.com

[Guest guest]

Thanks Tonikka She was only 6 months last time for her "eye lift" surgery and that was bad enought. Her little face. Since this operation is really not "necessary" it is hard to put her through it. But I can't second, third or fourth guess myself. We have great insurance coverage right now, she is at Childrens, her doctor is great and she heals very fast with minimal scaring at this age 2 and 3 mo. In our vain society I am trying to give her every advantage. Wish us luck will post pics after. Aimee Tonikka & <lyndenhunter@...> wrote: good luck with her surgery and hey it might be a good thing she can say OWEEE as now if it hurts you will actually know it.....anywayhope all goes well, let us knowTonikkaedmonton alberta CANADAOn

16-Mar-07, at 10:15 AM, Aimee Nimtz wrote:>> Hi All>> Rylee is scheduled on this monday the 18th to have her cantyplasty > surgery. We are alittle anxious because now she can say OWEEE!.>> She also has an appt with her genetisist on April 9th and I will > ask about the POF issues discussed here in the group. My > understanding from our orignal meetings is that Type 1 is for > females only and the POF condition can or cannot occur. But as I > said I will get more information . We will be meeting with Dr. > Marilyn of Childrens hospital here in San Diego and she is a > leader in the field.>> Wishing you all a great weekend.> Aimee>> macster74 wrote:> My name is Machaela, and I am a new member. I have a 2yr old daughter> who was diagnosed @ approx 10mths old. When she was born her eyes were> not

open, and the doctors tried to force them open. Like , they> opened in the following days but with very small openings. We spoke to> many different peadiatricions,doctors etc. who seemed very unsure of> what the problem was. They assured us that her vision was fine but> told us they had not seen of this before. Perhaps that was because we> live in a reasonably small city. We were then referred to a specialist> in Melbourne(aus!) where they began to suspect BPES but thought she> was a little young to diagnose. By the time she was 10mths they were> confident that it was BPES. Like you, we began to search the net to> find what we could but, we too found that alot of it was very medical.> I am in the nursing field so I could understand some of it but alot> was really for surgeons etc. I was delighted to find this group and> have found it is a great place for people to share

experiences,> stories etc but as I was told, the best place to get answers is a> health professional. It appears to be a very individual thing. Maybe a> geneticist would be someone of benifit for you to talk to, as we found> that very benificial. It sounds as if your has other issues> involved, but as for me, all I have to offer you is my story, and my> own individual experience...Take care! and welcome to the group!>>>> Now that's room service! Choose from over 150,000 hotels> in 45,000 destinations on Travel to find your fit.>> Tonikka & Chrischeck out our blogwww.nottynurse.blogspot.com

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