welcome suzanne

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Hi suzanne, welcome to you and Ella, this site is amazing... i am clare, my daughter is emy and we both have BPES and have been operated on by Mr Collin at Moorfields. You will find support and information here, ask a question and people's experiences come back - it is quite amazing for me after all of these years to understand so many others like me!! Our children can talk to each other, and grow up with other children who have the same eyes as them. This can only be good for there self esteem. Love to all clare - hertfordshire, UKsuzanneheatwole <jeff.heatwole@...> wrote: > Hello lovely people> Dear Joyce,This is my first time posting anything on here, I am a new member. I am reading, reading, as you said you did to help you get your head around all of this. My 3.9 yr. old Ella is on the waiting list for Dr. Chang (has anyone heard of him) in Leeds. The more I read, I

wonder how fast I need to make an appointment at Moorlands?! I am really glad that your surgery went well with your girls. We were told that Ella would do best with surgery between 3.5 and 5 to make sure her cranial bones were well formed and tissue was available from her own body. She had a brow lift at 4 months old andher vision is good. We're at the point where we are gathering information, its great to see this site! I am amazed at the great support amongst families and people all with BPES. We just met another lovely family that lives about 5 blocks from us, our daughers are 1 month apart. Amazing! God Bless you!Suzanne Heatwole> Just thought I'll share my daughters experience on the 20th of Feb > 06. Both girls went in on the same day for 2 different procedures.> > Mayowa for a brow suspenson. The results are fantastic, no scarring, > not much swelling

and recovery is fast. She still has the > canthoplasty to come when she is about 15 or 16 years old. (it is > delayed bcos of an operation she had earlier via my local hospital > which was not successful and left her with thick scars)> > > Tina had a YV canthoplasty. I was warned that she might have scars, > the results are brilliant, the scars are not visible yet( I think > they will be minimal if any) her eyes are definately wider recovery > is fast and she is already jumping around the house. She will go back > for a brow suspenson in 6 mnths and that hopefully will be the last > surgery. > > Surgery was by Mr Yaser Abu-Rayah. He did a great job. The aftercare > has been great the nurses still speak to me everyday about the girls > recovery. > > We are heading back in a few days.> > For anyone considering surgery at

moorfields, I will say you are in > good hands, they have an excellent team and plenty of experience.> > Thanks to everyone in this group, I went thru about 2000 past > messages b4 surgery and all the inputs prepared me.> > A massive thanks to Shireen and Clare Teale for everything. God bless > you all.> > > > > > >