Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 off that topic but want to ask meg some thing.........how do you determine someone chances of having another baby with charge syndrome I mean do they have to do blood work or what do they do cause I am discussing this with insurance for genetic counselling (stupid they will pay to have my tubes tied but not sure whether they should pay for this or not ) I want another child some day but only if the risks are not that great I will not put another baby threw this (ok so yes i would if I found out when pregnant) http://community.webtv.net/maryechick12/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 In a message dated 30/12/01 04:34:12 GMT Standard Time, marykaylynd@... writes: > I am 47 years old and I have charge. You said you wouldn't put another baby > through this. I'm glad I was born > > , You can't imagine how wonderful it is to hear you say this. I really hope my son thinks the same and at the moment I'm sure he does. He is so full of fun and full of life,nothing gets him down. He is the happiest wee boy around Elaine mum to Elise (9 yrs) & Jack (4 yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 I knew that came out wrong I ment if I could prevent it from happening again I would do what ever I could I will be honest I dont think I could handle this again but If I found out I was pregnant today (WITCH I AM NOT)and found out he/she had all the same problems or even worst I would still have it and love him/her just the same but if they told me I would definitly have a another one with all these problems (before I got pregant that is )I would /will have my tubes tyed. I dont believe in abortion for me....... http://community.webtv.net/maryechick12/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 I did not realize you had charge as well witch problems do you have? http://community.webtv.net/maryechick12/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi , Yes I knew what you meant but I wanted to reassure you as an adult charger that I don't mind having these little problems Kay If you need prayer join my prayer list Send email to prayingforyou-subscribe@... Join BlindFullGospel Send email to BlindFullGospel-subscribe@... Re: Topical accutane I knew that came out wrong I ment if I could prevent it from happening again I would do what ever I could I will be honest I dont think I could handle this again but If I found out I was pregnant today (WITCH I AM NOT)and found out he/she had all the same problems or even worst I would still have it and love him/her just the same but if they told me I would definitly have a another one with all these problems (before I got pregant that is )I would /will have my tubes tyed. I dont believe in abortion for me....... http://community.webtv.net/maryechick12/ Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 6th International CHARGE Syndrome Conference, Cleveland, Ohio, July 25-27, 2003. Information will be available at our website www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi , I have coloboma of the irises, retinas, and optic nerves of both eyes. I am blind. I also have a 70% hearing loss in one ear. I have swallowing difficulties and small genitals. Kay If you need prayer join my prayer list Send email to prayingforyou-subscribe@... Join BlindFullGospel Send email to BlindFullGospel-subscribe@... Re: Topical accutane I did not realize you had charge as well witch problems do you have? http://community.webtv.net/maryechick12/ Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 6th International CHARGE Syndrome Conference, Cleveland, Ohio, July 25-27, 2003. Information will be available at our website www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 do you mind if I ask you some questions??? http://community.webtv.net/maryechick12/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Ask away I do not mind at all Kay If you need prayer join my prayer list Send email to prayingforyou-subscribe@... Join BlindFullGospel Send email to BlindFullGospel-subscribe@... Re: Topical accutane do you mind if I ask you some questions??? http://community.webtv.net/maryechick12/ Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 6th International CHARGE Syndrome Conference, Cleveland, Ohio, July 25-27, 2003. Information will be available at our website www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 geees I don know where to start!!!!!first of al are you completely blind ? I dont understand about this colobomas they said billy was completely blind because of them (his are in his retinas only and his left eye is much smaller )he cant see that well out of his left eye but his right I think he sees better than me with (I am just about blind without glasses)just wondeing what the world looks like to you ??? http://community.webtv.net/maryechick12/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Well at one point I could see 20/400 out of the right eye but never more than light out of the left eye. I have glaucoma now and so cannot see much more than just light and shadows out of the right eye now. When I could see I could see things up close but not things far away from me. I had trouble seeing a traffic light but mostly because of the sunshine. I could see them better at night. I could read very large print when I was younger. Kay If you need prayer join my prayer list Send email to prayingforyou-subscribe@... Join BlindFullGospel Send email to BlindFullGospel-subscribe@... Re: Topical accutane geees I don know where to start!!!!!first of al are you completely blind ? I dont understand about this colobomas they said billy was completely blind because of them (his are in his retinas only and his left eye is much smaller )he cant see that well out of his left eye but his right I think he sees better than me with (I am just about blind without glasses)just wondeing what the world looks like to you ??? http://community.webtv.net/maryechick12/ Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 6th International CHARGE Syndrome Conference, Cleveland, Ohio, July 25-27, 2003. Information will be available at our website www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Elaine, ditto that attitude for Kennedy! I can't believe how this kid comes through these just AWFUL surgeries, face all bloodied, swollen, etc and just smiles, or says " toys " the minute she's awake from it. She is a very happy child also (except when things aren't rolling her way....she's got a real control thing going on!!! - don't know WHERE she gets that from!) Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " In the depths of winter I finally learned there was in me an invincible summer. " -Albert Camus Re: Topical accutane In a message dated 30/12/01 04:34:12 GMT Standard Time, marykaylynd@... writes: > I am 47 years old and I have charge. You said you wouldn't put another baby > through this. I'm glad I was born > > , You can't imagine how wonderful it is to hear you say this. I really hope my son thinks the same and at the moment I'm sure he does. He is so full of fun and full of life,nothing gets him down. He is the happiest wee boy around Elaine mum to Elise (9 yrs) & Jack (4 yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 , I have to be careful with that little problem. I think we feel out of control of our bodies and our circumstances and we grasp at something we can control. Kay If you need prayer join my prayer list Send email to prayingforyou-subscribe@... Join BlindFullGospel Send email to BlindFullGospel-subscribe@... Re: Topical accutane In a message dated 30/12/01 04:34:12 GMT Standard Time, marykaylynd@... writes: > I am 47 years old and I have charge. You said you wouldn't put another baby > through this. I'm glad I was born > > , You can't imagine how wonderful it is to hear you say this. I really hope my son thinks the same and at the moment I'm sure he does. He is so full of fun and full of life,nothing gets him down. He is the happiest wee boy around Elaine mum to Elise (9 yrs) & Jack (4 yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Thanks Meg! Audrey Dwyer, Mom to -10, Meredith-8(CHARGE), -7, and wife to Bill. Topical accutane > > Sorry, I meant to include that with the previous message. There is no evidence > at all that topical acctane (Retin-A creme, etc.) increases the risk for anything, > even when used during pregnancy. I wouldn't advise using it during pregnancy, > but when I find out someone has used it, I don't get at all worried about it. > The creme is absorbed only in the skin - very little, if any, gets into the > general system where it could reach a developing baby. > Meg > Meg Hefner, M.S. > Genetic Counselor > St. Louis, MO > hefnerma@... > meg@... > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Kay, I definitely think that Kennedy has a " control " thing because of all she's been through. If I'd had 10 surgeries by the age of 3 and all the procedures, poking & prodding this child has been through, I imagine I'd want to be in control of things from then on also. I try to remember that and have lots of patience when she is in one of her upset stages when things aren't going her way. But, I don't want her thinking she can control every situation either. Sometimes it's hard finding a balance. Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " In the depths of winter I finally learned there was in me an invincible summer. " -Albert Camus Re: Topical accutane In a message dated 30/12/01 04:34:12 GMT Standard Time, marykaylynd@... writes: > I am 47 years old and I have charge. You said you wouldn't put another baby > through this. I'm glad I was born > > , You can't imagine how wonderful it is to hear you say this. I really hope my son thinks the same and at the moment I'm sure he does. He is so full of fun and full of life,nothing gets him down. He is the happiest wee boy around Elaine mum to Elise (9 yrs) & Jack (4 yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Yes there is a line that has to be drawn. She has to learn somehow that it is ok not to always be in control. It is hard. Kay Re: Topical accutane > > > In a message dated 30/12/01 04:34:12 GMT Standard Time, > marykaylynd@... writes: > > > > I am 47 years old and I have charge. You said you wouldn't put another > baby > > through this. I'm glad I was born > > > > > > , > You can't imagine how wonderful it is to hear you say this. I really hope > my > son thinks the same and at the moment I'm sure he does. He is so full of > fun > and full of life,nothing gets him down. He is the happiest wee boy around > > Elaine mum to Elise (9 yrs) & Jack (4 yrs) CHaRGE > Dumfries, Scotland > > > Quote Link to comment Share on other sites More sharing options...
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