Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 THANKS ANN! TONY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Tony, I hope you're feeling better. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Hi Tony sorry to hear you have been ill but it is soooo good to have you back Jeanette UK rmeeks3230@... wrote: Hey There!I'm sorry that I've been off the computer for a few days. When I went to the MD lastweek my plaletes were extremely low so I have to go in the hospital for a transfusionand they kept me a few days to strenght my inmune system. I had asthma added tomy parade of diagnosis so I guess I better quit smoking. God help me thru it! Theprescribed some king of mouth inhauler for the asthma but i got to go get it later ontoday. Believe me when I tell you that I missed you all. Have Bert been keeping youlaughing. My brain is not quite up yet to remember all the names but Harper, Carol,Gayle, Jeanette, , The lady from Houston ,EVERYBODY hope you are doingwell. I need to say this at load "I'M NOT GIVING UP!!!" Bless you all!tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Glad that you are out of the hospital. Bert has been keeping us laughing. Hope you are feeling a bit stronger. Take care Ann CT [ ] Hello everybody! Hey There!I'm sorry that I've been off the computer for a few days. When I went to the MD lastweek my plaletes were extremely low so I have to go in the hospital for a transfusionand they kept me a few days to strenght my inmune system. I had asthma added tomy parade of diagnosis so I guess I better quit smoking. God help me thru it! Theprescribed some king of mouth inhauler for the asthma but i got to go get it later ontoday. Believe me when I tell you that I missed you all. Have Bert been keeping youlaughing. My brain is not quite up yet to remember all the names but Harper, Carol,Gayle, Jeanette, , The lady from Houston ,EVERYBODY hope you are doingwell. I need to say this at load "I'M NOT GIVING UP!!!" Bless you all!tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Tony Glad you are out of the hospital and hope you are feeling better. Glo >From: " Ann Rita " <seafarer52@...> >Reply- >< > >Subject: Re: [ ] Hello everybody! >Date: Mon, 11 Feb 2002 17:01:54 -0500 > >Glad that you are out of the hospital. Bert has been keeping us laughing. >Hope you are feeling a bit stronger. Take care > >Ann CT > > [ ] Hello everybody! > >Hey There! > >I'm sorry that I've been off the computer for a few days. When I went to >the MD last >week my plaletes were extremely low so I have to go in the hospital for a >transfusion >and they kept me a few days to strenght my inmune system. I had asthma >added to >my parade of diagnosis so I guess I better quit smoking. God help me thru >it! The >prescribed some king of mouth inhauler for the asthma but i got to go get >it later on >today. Believe me when I tell you that I missed you all. Have Bert been >keeping you >laughing. My brain is not quite up yet to remember all the names but >Harper, Carol, >Gayle, Jeanette, , The lady from Houston ,EVERYBODY hope you are >doing >well. I need to say this at load " I'M NOT GIVING UP!!! " Bless you all! > >tony > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2002 Report Share Posted November 14, 2002 Hi Judi! I am glad the pain is subsiding somewhat. I bet it's nice to move around. Drumming is a great low impact way to loosen the wrist and hand joints as long as you're not like " Animal " from the Muppets. I used to be so the transition was tough. I am sure my family appreciates it though... I would definitely suggest getting some light sticks (7's or so) and a practice pad. The results can be pretty amazing. Take care. Love and Hugs, Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Lo siento , pero yo hablo espanol, solamente muy pequeno. Escribame in Espanol y me amigo se assistame. Claro? Pam O'Brien Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Yo escribo espanol mas o menos. Yo tengo BPES y tambien mi hija, mi padre y mi abuelo lo tienen. Mi hija tiene 5 meses, yo, 34 anos. Tienes BPES o tienes un hijo con BPES? Si escribes tus preguntas, yo puedo traducirlas para el grupo. Beth GordonmoniCA <m_krexa@...> wrote: hello!, My name is , I'm from Argentina, I dont speak inglish, I just speak spanish and i have many questions to do, please, somebody can write me ?, thanks. chau. monica. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Gosh, I don't know if I would let anyone touch my daughter if they have never done the surgery. I think the procedure is very sophisticated (the fold) and requires years of experience. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Ayyyyyy por fin! te agradezco tanto, me siento un poco sola con todo esto y recibir alguien en espanol me reconforta mucho. yo tengo 35 años, con mi marido tenemos tres hijos, uno de 7 otro de 4 y la tercera una nena de tres meses ella nacio con BPES. Fue muy dificil descubrirlo, soy argentina pero vivo en un pequeño pueblo en la costa de brasil donde los doctores escasean. Estuve investigando todo lo posible en el tema, la verdad es que sus ojos ahora es lo que menos me preocupa ya que no estan tan cerrados y en el ultimo de los casos representaria un tema estetico solamente, lo que me tiene mal es sospechar que tenga algo mas: es muy flaca, a diferencia de sus hermanos no quiso tomar el pecho y se alimenta a mamadera , es hipotonica, con tres meses todavia no sostiene la cabeza, no se, tengo miedo de algun retraso o problema neurologico. Por ahora espero los resultados de su cariotipo que va a develar si tiene otro cromosoma variado hicimos esos examenes hace ya 40 dias y faltan 10 mas para su resultado, pero estoy tan preocupada, no se que hacer, no se si es normal esto en los bebes con BPES. o si de repente es ella que tiene algo mas. En argentina la vio un oftalmologo (unno muy bueno, pero nunca opero alguien con BPES.) el quiere operarla en marzo pero yo no se, quiero encontrar alguien con experiencia en el tema. No se si uds. conocen a alguno por aca o saben como orientarme. Igual lo que mas necesitaba era alguien que comparta este extrano desorden y me aliente a que no es algo tan terrible. desde ya te agradezco mucho, ya me siento mejor. un gran abrazo . --- Beth Gordon <bethgordon03@...> escribió: > > > Yo escribo espanol mas o menos. Yo tengo BPES y > tambien mi hija, mi padre y mi abuelo lo tienen. Mi > hija tiene 5 meses, yo, 34 anos. > > Tienes BPES o tienes un hijo con BPES? > > Si escribes tus preguntas, yo puedo traducirlas para > el grupo. > > Beth Gordon > > moniCA <m_krexa@...> wrote: > > hello!, My name is , I'm from Argentina, I > dont speak inglish, > I just speak spanish and i have many questions to > do, please, > somebody can write me ?, thanks. chau. monica. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 hola allí monica, recepción al grupo, si usted tiene cualquier sensación de las preguntas libremente apreguntar al grupo tenemos cargas de la información a dar y a dar. suena como usted tiene alot el ir encendido i su familia, y no hay nada mal con ser inseguro de un cirujano que ha tratado nuncasiempre de BPES. ¿qué cirugía desean hacer en su niño?? ¿y cuál es su nombre de los childs?? de todas formas le deseo porciones de suerte en encontrar al cirujanoadecuado y me siento por favor libre hacer muchas preguntas. Tonikka TRANSLATED IN ENGLISH hello there monica, welcome to the group, if you have any questions feel free to ask the group we have loads of information to give and give. it sounds like you have alot going on i your family, and there is nothing wrong with being unsure of a surgeon who has never ever dealt with BPES. what surgery do they want to do on your child?? and what is your childs name?? anyway i wish you lots of luck in finding the right surgeon and please feel free to ask many questions. Tonikka -----Original Message-----From: moniCA [mailto:m_krexa@...]Sent: January 5, 2005 7:17 AMblepharophimosis Subject: blepharophimosis hello everybody!hello!, My name is , I'm from Argentina, I dont speak inglish, I just speak spanish and i have many questions to do, please, somebody can write me ?, thanks. chau. monica. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 - He traducido tu mensaje a ingles para los demas. Yo soy maestra de espanol y me alegro ayudar en comunicarnos. Ellos son muy buena gente. Yo te escribo mi "historia" en espanol manana. No te preocupes. Yo tengo BPES y yo estoy bien, y tu hija sera buenisima, porque tenga una mama muy especial. Yo pudiera escribir toda la noche pero Lily tiene que dormirse. mil besos y abrazos Beth Gordon Everyone - I translated 's post into English. If you wish to reply to her, please send message and I can translate into Spanish. I teach Spanish so I don't mind doing this. She sounds just like all of us. Beth Oh finally! I thank you very much I feel a little bit alonewith this and to hear from someone in Spanish reassures me very much. I am 35 years old, my husband and I have 3 children, one is 7 the other 4 and the third is a baby girl 3 months old. She was born with BPES. It was very difficult to discover it, I am argentinian but I live in a small town on the coast of Brazil where doctors are scarce. I havae been investigating everything possible on this subjectthe truth is that her eyes now are the least of my worries, now that they are not closed and in most cases this is only an esthetic problem. What worries me is I suspect she has something more, she is very thin, different than her brothers she doesn’t want to nurse and she bottle feeds. She is hypotonic, at 3 months she still doesn’t support her head. I am afraid she has some delay or neurologic problem. For now I hope the results of her genetic testing are going to show if she has some other chromosomal variation. We had tests 40 days ago and we have 10 more to wait for the results, but I am worried, I don’t know what to do., if this is not normal for babies with BPES, then it’s that she has something else. In Argentina we saw an ophthalmologist ( a very good one, but never operated on someone with BPES) He wants to operate in March but I don’t know, I want to find someone with more experience in this area. I don’t know if you know someone here or know how to help me find someone. I I also need more someone who shares this strange disorder and can enlighten me that this is not so terrible. Now I thank you very much, I already feel better, I big hug monica krexa <m_krexa@...> wrote: Ayyyyyy por fin! te agradezco tanto, me siento un pocosola con todo esto y recibir alguien en espanol mereconforta mucho.yo tengo 35 años, con mi marido tenemos tres hijos,uno de 7 otro de 4 y la tercera una nena de tres mesesella nacio con BPES. Fue muy dificil descubrirlo, soyargentina pero vivo en un pequeño pueblo en la costade brasil donde los doctores escasean. Estuveinvestigando todo lo posible en el tema, la verdad esque sus ojos ahora es lo que menos me preocupa ya queno estan tan cerrados y en el ultimo de los casosrepresentaria un tema estetico solamente, lo que metiene mal es sospechar que tenga algo mas: es muyflaca, a diferencia de sus hermanos no quiso tomar elpecho y se alimenta a mamadera , es hipotonica, contres meses todavia no sostiene la cabeza, no se, tengomiedo de algun retraso o problema neurologico. Porahora espero los resultados de su cariotipo que va adevelar si tiene otro cromosoma variado hicimos esosexamenes hace ya 40 dias y faltan 10 mas para suresultado, pero estoy tan preocupada, no se que hacer,no se si es normal esto en los bebes con BPES. o si derepente es ella que tiene algo mas.En argentina la vio un oftalmologo (unno muy bueno,pero nunca opero alguien con BPES.) el quiere operarlaen marzo pero yo no se, quiero encontrar alguien conexperiencia en el tema. No se si uds. conocen a algunopor aca o saben como orientarme.Igual lo que mas necesitaba era alguien que compartaeste extrano desorden y me aliente a que no es algotan terrible.desde ya te agradezco mucho, ya me siento mejor. ungran abrazo . --- Beth Gordon<bethgordon03@...> escribió: > > > Yo escribo espanol mas o menos. Yo tengo BPES y> tambien mi hija, mi padre y mi abuelo lo tienen. Mi> hija tiene 5 meses, yo, 34 anos. > > Tienes BPES o tienes un hijo con BPES? > > Si escribes tus preguntas, yo puedo traducirlas para> el grupo.> > Beth Gordon> > moniCA <m_krexa@...> wrote:> > hello!, My name is , I'm from Argentina, I> dont speak inglish, > I just speak spanish and i have many questions to> do, please, > somebody can write me ?, thanks. chau. monica.> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2005 Report Share Posted January 12, 2005 Hola, yo soy español y tengo una hija con blefarofimosis. Hasta ahora solo había escrito en inglés porqué nohabí ningún hispanohablante en el grupo. Conozco bien la problemática de ésta alteración y por tanto si tienes dudas puedes preguntarlas y te contestaré. Si tienes un hijo o una hija recién diagnosticada lo importante es establecer el grado de ptosis, esto es la " caida " de los párpados, que podría interferir en el desarrollo adecuado de la visión. Si esta no está comprometida por la ptosis la cuestión, al menos inicialmente, es puramente estética si bien debe seguir controles oftalmológicos para comprobar que la visión no se deteriora. Otro aspecto de la BPES, en niñas y mujeres, es la presencia en algunas cosas de fallo ovárico prematuro con la consiguiente menopausia precoz e infertilidad. Si tienes dudas escribe. Un saludo >From: " moniCA " <m_krexa@...> >Reply-blepharophimosis >blepharophimosis >Subject: blepharophimosis hello everybody! >Date: Wed, 05 Jan 2005 14:16:55 -0000 > > >hello!, My name is , I'm from Argentina, I dont speak inglish, >I just speak spanish and i have many questions to do, please, >somebody can write me ?, thanks. chau. monica. > > > Quote Link to comment Share on other sites More sharing options...
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