Guest guest Posted July 24, 2004 Report Posted July 24, 2004 Lynne- Glad is doing well post-op. Isn't it amazing at the job-longevity of some of the staff at the Children's Hospitals? It says something about a place if they can keep folks around that long. We also enjoy going back. It makes me feel so much more comfortable to see the same faces all the time. And I'm amazed that they remember the kids. Even if you're a " frequent flyer " -- they still see so many kids! That's one thing that's making more anxious about this surgery at Shriners -- never been there, don't know their way of doing things, any of the staff, where things are, etc. But we did great at Chicago this spring so I'm comforting myself in knowing that all children's hospitals seem to be pretty great places -- unless we've been fortunate enough to be at the best. Michele W Quote
Guest guest Posted July 24, 2004 Report Posted July 24, 2004 I think there ARE many wonderful Children's Hospitals, Michele, but for sure Children's in Saint Louis IS one of the very, very best. That's where Kendra was diagnosed with CHARGE and she had already been at 3 state of the art hospitals before she got the diagnosis at St. Louis. And I remember thinking to myself that Children's in Saint Louis was one of the best places she had ever had surgery due to the very conscientious nature of the staff. I think it's not stretching it to say that you have been at one of the best. But, there are many other great hospitals and no doubt Chicago Shriner's is one of them. I'm glad to hear about 's successful surgery, Lynn. Did she have something called a cholesteatoma? At 07:31 PM 7/23/2004, you wrote: >Lynne- >Glad is doing well post-op. Isn't it amazing at the job-longevity >of some of the staff at the Children's Hospitals? It says something >about a place if they can keep folks around that long. We also enjoy >going back. It makes me feel so much more comfortable to see the same >faces all the time. And I'm amazed that they remember the kids. Even >if you're a " frequent flyer " -- they still see so many kids! That's one >thing that's making more anxious about this surgery at Shriners -- never >been there, don't know their way of doing things, any of the staff, >where things are, etc. But we did great at Chicago this spring so I'm >comforting myself in knowing that all children's hospitals seem to be >pretty great places -- unless we've been fortunate enough to be at the best. > >Michele W Quote
Guest guest Posted July 24, 2004 Report Posted July 24, 2004 Lynn, Glad to hear the 's surgery went well. Is there much discomfort? So now she heals up a bit, goes back to work and then gets her own appartment. Wow, she sure has tons goiing on. What about you? How are you handling things. Take a few mom ents to do something for yourself. Bonnie Quote
Guest guest Posted July 24, 2004 Report Posted July 24, 2004 glad to hear all went well, hope the recovery is easy , and hse is ready for work on monday. hugs, maria and the guys 's Ear Surgeries > HI, > We just returned from her outpatient ear surgeries ( the 28th > of all different kinds of surgeries) > Dr. replaced the permanent PE tube in her left ear. He removed a > large grandular growth from her right ear and did what he called a > mastoid revision. She has a birth defect " cavity " in her R ear. He > said he turned the " cavity " into a larger area that > shouldn't " collect " stuff that turns into the grandular growth. She > had a similar much more extensive surgery 9 years ago. Hopefully now > that her ear is fully grown he may not have to repeat this process > in another few years. He isn't sure if the problem will return a > third time. > It's been 6 years since her last surgery( #27) a couple of > the nurses remembered her and were amazed she has growen up so much. > They love seeing the kids grow up. It is like a family reunion in > the recovery room. > is resting comfortably with pain meds. She will be in > for the weekend and return to her job Mon. morning. Lots of ear > drops and a post-op visit in 4 weeks. > Thanks for everyone's prayers. > Lynn > Mom to Tom 25, cHARGE amost 20 and wife to Doug > > > > > > 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 > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote
Guest guest Posted July 24, 2004 Report Posted July 24, 2004 HI, Thanks, is up and about today and feels fine. She is so tolerant of pain and never complains. I am sure she still has some pain. The dissolvable gauze packed in her right ear will be there for at least two weeks if not longer. She couldn't hear before so she doesn't miss not hearing yet. Once the guaze is gone she should hear fine with her aid. Her aid is already back in the left ear. Rainbow Babies and Children's Hospital in Cleveland, OH has truly been our life saver. If it wasn't for them wouldn't be here. Dr. Arnold ENT ( Head of Peds ENT) came to RB & C from Boston ( not sure what hospital) way back when was 2 years old. He has watched her grow and admits she has done far far better than he expected when we first met. He is thrilled and so are we. The nurse we met yesterday has been in the recovery room for 15 years. The funny thing is is that the new building is only 6 years old. We have never been in the NEW RAINBOW until yesterday. Her last surgery was in another building in the complex. The NEW RAINBOW was designed in part by familes and patients. I can remember when we were in the old building filling out questionairs about what we wanted as parents for the new building. was asked too about what kids want. It is fun to know that my imput had something to do with the great building they have now. Michele, you and Aubrie and family are in my prayers. Recovery for you guys will take much longer. Lynn Re: 's Ear Surgeries Lynne- Glad is doing well post-op. Isn't it amazing at the job-longevity of some of the staff at the Children's Hospitals? It says something about a place if they can keep folks around that long. We also enjoy going back. It makes me feel so much more comfortable to see the same faces all the time. And I'm amazed that they remember the kids. Even if you're a " frequent flyer " -- they still see so many kids! That's one thing that's making more anxious about this surgery at Shriners -- never been there, don't know their way of doing things, any of the staff, where things are, etc. But we did great at Chicago this spring so I'm comforting myself in knowing that all children's hospitals seem to be pretty great places -- unless we've been fortunate enough to be at the best. Michele W 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
Guest guest Posted July 24, 2004 Report Posted July 24, 2004 , " cholesteatoma " Yes, thanks for remembering for me. If I don't write it down I can never remember the medical terms. I didn't write it down yesterday. She is such a trouper. She is doing well. Now I have to keep her from overdoing it today and tomorrow. Lynn Re: 's Ear Surgeries I think there ARE many wonderful Children's Hospitals, Michele, but for sure Children's in Saint Louis IS one of the very, very best. That's where Kendra was diagnosed with CHARGE and she had already been at 3 state of the art hospitals before she got the diagnosis at St. Louis. And I remember thinking to myself that Children's in Saint Louis was one of the best places she had ever had surgery due to the very conscientious nature of the staff. I think it's not stretching it to say that you have been at one of the best. But, there are many other great hospitals and no doubt Chicago Shriner's is one of them. I'm glad to hear about 's successful surgery, Lynn. Did she have something called a cholesteatoma? At 07:31 PM 7/23/2004, you wrote: >Lynne- >Glad is doing well post-op. Isn't it amazing at the job-longevity >of some of the staff at the Children's Hospitals? It says something >about a place if they can keep folks around that long. We also enjoy >going back. It makes me feel so much more comfortable to see the same >faces all the time. And I'm amazed that they remember the kids. Even >if you're a " frequent flyer " -- they still see so many kids! That's one >thing that's making more anxious about this surgery at Shriners -- never >been there, don't know their way of doing things, any of the staff, >where things are, etc. But we did great at Chicago this spring so I'm >comforting myself in knowing that all children's hospitals seem to be >pretty great places -- unless we've been fortunate enough to be at the best. > >Michele W Quote
Guest guest Posted July 24, 2004 Report Posted July 24, 2004 Bonnie, isn't complaining today. I am sure there is discomfort. She is so tough and never complains. I am doing fine with " all this " . I do pray daily for and that I can " let go " . It is so hard to let go and hope things will be okay for her " in the world " . I think I am doing much better than her Dad. He is afraid for her. She moves July 31st I think. I am doing something for myself. I am buying my first very own BRAND NEW car. I have always had used ones. I am getting a new car so can have my old ( 1998 ) one. Doug got his brand new truck two years ago. Now it is my turn. I also am now doing Hospice volunteer work and have a nursing home patient. I also just started as a Hospice Clown named Pansy. I love it. I have lots of " spring cleaning " to finish and once mid Aug. gets here I will be returning to my class room to get ready for a new year. Once I am back to teaching, I " worry " far less about my kids. I am too busy. I think that is a good thing. Lynn Re: 's Ear Surgeries Lynn, Glad to hear the 's surgery went well. Is there much discomfort? So now she heals up a bit, goes back to work and then gets her own appartment. Wow, she sure has tons goiing on. What about you? How are you handling things. Take a few mom ents to do something for yourself. Bonnie Quote
Guest guest Posted July 24, 2004 Report Posted July 24, 2004 Thanks, She seems " good to go " today. She isn't a complainer. Lynn 's Ear Surgeries > HI, > We just returned from her outpatient ear surgeries ( the 28th > of all different kinds of surgeries) > Dr. replaced the permanent PE tube in her left ear. He removed a > large grandular growth from her right ear and did what he called a > mastoid revision. She has a birth defect " cavity " in her R ear. He > said he turned the " cavity " into a larger area that > shouldn't " collect " stuff that turns into the grandular growth. She > had a similar much more extensive surgery 9 years ago. Hopefully now > that her ear is fully grown he may not have to repeat this process > in another few years. He isn't sure if the problem will return a > third time. > It's been 6 years since her last surgery( #27) a couple of > the nurses remembered her and were amazed she has growen up so much. > They love seeing the kids grow up. It is like a family reunion in > the recovery room. > is resting comfortably with pain meds. She will be in > for the weekend and return to her job Mon. morning. Lots of ear > drops and a post-op visit in 4 weeks. > Thanks for everyone's prayers. > Lynn > Mom to Tom 25, cHARGE amost 20 and wife to Doug > > > > > > 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 > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote
Guest guest Posted July 24, 2004 Report Posted July 24, 2004 Good to hear Lynn, I was thinking about you guys. Hugs to . Weir Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme. New Brunswick, Canada Weir homepage: http://personal.nbnet.nb.ca/gweir CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca 's Ear Surgeries HI, We just returned from her outpatient ear surgeries ( the 28th of all different kinds of surgeries) Dr. replaced the permanent PE tube in her left ear. He removed a large grandular growth from her right ear and did what he called a mastoid revision. She has a birth defect " cavity " in her R ear. He said he turned the " cavity " into a larger area that shouldn't " collect " stuff that turns into the grandular growth. She had a similar much more extensive surgery 9 years ago. Hopefully now that her ear is fully grown he may not have to repeat this process in another few years. He isn't sure if the problem will return a third time. It's been 6 years since her last surgery( #27) a couple of the nurses remembered her and were amazed she has growen up so much. They love seeing the kids grow up. It is like a family reunion in the recovery room. is resting comfortably with pain meds. She will be in for the weekend and return to her job Mon. morning. Lots of ear drops and a post-op visit in 4 weeks. Thanks for everyone's prayers. Lynn Mom to Tom 25, cHARGE amost 20 and wife to Doug 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 that is what tim had--and why he has a prosthesis now--it was wraapped around two of the ear bones. maria Re: 's Ear Surgeries > > > I think there ARE many wonderful Children's Hospitals, Michele, but for > sure Children's in Saint Louis IS one of the very, very best. That's where > Kendra was diagnosed with CHARGE and she had already been at 3 state of the > art hospitals before she got the diagnosis at St. Louis. And I remember > thinking to myself that Children's in Saint Louis was one of the best > places she had ever had surgery due to the very conscientious nature of the > staff. I think it's not stretching it to say that you have been at one of > the best. But, there are many other great hospitals and no doubt Chicago > Shriner's is one of them. > > I'm glad to hear about 's successful surgery, Lynn. Did she have > something called a cholesteatoma? > > > At 07:31 PM 7/23/2004, you wrote: > >Lynne- > >Glad is doing well post-op. Isn't it amazing at the job-longevity > >of some of the staff at the Children's Hospitals? It says something > >about a place if they can keep folks around that long. We also enjoy > >going back. It makes me feel so much more comfortable to see the same > >faces all the time. And I'm amazed that they remember the kids. Even > >if you're a " frequent flyer " -- they still see so many kids! That's one > >thing that's making more anxious about this surgery at Shriners -- never > >been there, don't know their way of doing things, any of the staff, > >where things are, etc. But we did great at Chicago this spring so I'm > >comforting myself in knowing that all children's hospitals seem to be > >pretty great places -- unless we've been fortunate enough to be at the best. > > > >Michele W > > > Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 that is what tim had--and why he has a prosthesis now--it was wraapped around two of the ear bones. maria Re: 's Ear Surgeries > > > I think there ARE many wonderful Children's Hospitals, Michele, but for > sure Children's in Saint Louis IS one of the very, very best. That's where > Kendra was diagnosed with CHARGE and she had already been at 3 state of the > art hospitals before she got the diagnosis at St. Louis. And I remember > thinking to myself that Children's in Saint Louis was one of the best > places she had ever had surgery due to the very conscientious nature of the > staff. I think it's not stretching it to say that you have been at one of > the best. But, there are many other great hospitals and no doubt Chicago > Shriner's is one of them. > > I'm glad to hear about 's successful surgery, Lynn. Did she have > something called a cholesteatoma? > > > At 07:31 PM 7/23/2004, you wrote: > >Lynne- > >Glad is doing well post-op. Isn't it amazing at the job-longevity > >of some of the staff at the Children's Hospitals? It says something > >about a place if they can keep folks around that long. We also enjoy > >going back. It makes me feel so much more comfortable to see the same > >faces all the time. And I'm amazed that they remember the kids. Even > >if you're a " frequent flyer " -- they still see so many kids! That's one > >thing that's making more anxious about this surgery at Shriners -- never > >been there, don't know their way of doing things, any of the staff, > >where things are, etc. But we did great at Chicago this spring so I'm > >comforting myself in knowing that all children's hospitals seem to be > >pretty great places -- unless we've been fortunate enough to be at the best. > > > >Michele W > > > Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 Thanks , is back to normal except for the gauze pluged ear for the next two week plus. Her hearing in the other ear with the new PE tube isn't quite back to normal yet. Even with the aid in it she is doing a lot of " What? " We have been doing a lot of shouting today. We laugh about it. She is so good in fact she convinced me to let take her to a movie tonight. She won't be driving and as she said, " the movie will be plenty loud. " It's hard to argue. is very protective of her he will watch out for her. She has three days off from work and seems to want to put the time to good use. Lynn 's Ear Surgeries HI, We just returned from her outpatient ear surgeries ( the 28th of all different kinds of surgeries) Dr. replaced the permanent PE tube in her left ear. He removed a large grandular growth from her right ear and did what he called a mastoid revision. She has a birth defect " cavity " in her R ear. He said he turned the " cavity " into a larger area that shouldn't " collect " stuff that turns into the grandular growth. She had a similar much more extensive surgery 9 years ago. Hopefully now that her ear is fully grown he may not have to repeat this process in another few years. He isn't sure if the problem will return a third time. It's been 6 years since her last surgery( #27) a couple of the nurses remembered her and were amazed she has growen up so much. They love seeing the kids grow up. It is like a family reunion in the recovery room. is resting comfortably with pain meds. She will be in for the weekend and return to her job Mon. morning. Lots of ear drops and a post-op visit in 4 weeks. Thanks for everyone's prayers. Lynn Mom to Tom 25, cHARGE amost 20 and wife to Doug 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 Thanks , is back to normal except for the gauze pluged ear for the next two week plus. Her hearing in the other ear with the new PE tube isn't quite back to normal yet. Even with the aid in it she is doing a lot of " What? " We have been doing a lot of shouting today. We laugh about it. She is so good in fact she convinced me to let take her to a movie tonight. She won't be driving and as she said, " the movie will be plenty loud. " It's hard to argue. is very protective of her he will watch out for her. She has three days off from work and seems to want to put the time to good use. Lynn 's Ear Surgeries HI, We just returned from her outpatient ear surgeries ( the 28th of all different kinds of surgeries) Dr. replaced the permanent PE tube in her left ear. He removed a large grandular growth from her right ear and did what he called a mastoid revision. She has a birth defect " cavity " in her R ear. He said he turned the " cavity " into a larger area that shouldn't " collect " stuff that turns into the grandular growth. She had a similar much more extensive surgery 9 years ago. Hopefully now that her ear is fully grown he may not have to repeat this process in another few years. He isn't sure if the problem will return a third time. It's been 6 years since her last surgery( #27) a couple of the nurses remembered her and were amazed she has growen up so much. They love seeing the kids grow up. It is like a family reunion in the recovery room. is resting comfortably with pain meds. She will be in for the weekend and return to her job Mon. morning. Lots of ear drops and a post-op visit in 4 weeks. Thanks for everyone's prayers. Lynn Mom to Tom 25, cHARGE amost 20 and wife to Doug 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 Thanks , is back to normal except for the gauze pluged ear for the next two week plus. Her hearing in the other ear with the new PE tube isn't quite back to normal yet. Even with the aid in it she is doing a lot of " What? " We have been doing a lot of shouting today. We laugh about it. She is so good in fact she convinced me to let take her to a movie tonight. She won't be driving and as she said, " the movie will be plenty loud. " It's hard to argue. is very protective of her he will watch out for her. She has three days off from work and seems to want to put the time to good use. Lynn 's Ear Surgeries HI, We just returned from her outpatient ear surgeries ( the 28th of all different kinds of surgeries) Dr. replaced the permanent PE tube in her left ear. He removed a large grandular growth from her right ear and did what he called a mastoid revision. She has a birth defect " cavity " in her R ear. He said he turned the " cavity " into a larger area that shouldn't " collect " stuff that turns into the grandular growth. She had a similar much more extensive surgery 9 years ago. Hopefully now that her ear is fully grown he may not have to repeat this process in another few years. He isn't sure if the problem will return a third time. It's been 6 years since her last surgery( #27) a couple of the nurses remembered her and were amazed she has growen up so much. They love seeing the kids grow up. It is like a family reunion in the recovery room. is resting comfortably with pain meds. She will be in for the weekend and return to her job Mon. morning. Lots of ear drops and a post-op visit in 4 weeks. Thanks for everyone's prayers. Lynn Mom to Tom 25, cHARGE amost 20 and wife to Doug 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 Sounds like we have been very lucky. Hers has been in the outerear in front of the ear drum. We are hoping it may not return this time. Lynn Re: 's Ear Surgeries > > > I think there ARE many wonderful Children's Hospitals, Michele, but for > sure Children's in Saint Louis IS one of the very, very best. That's where > Kendra was diagnosed with CHARGE and she had already been at 3 state of the > art hospitals before she got the diagnosis at St. Louis. And I remember > thinking to myself that Children's in Saint Louis was one of the best > places she had ever had surgery due to the very conscientious nature of the > staff. I think it's not stretching it to say that you have been at one of > the best. But, there are many other great hospitals and no doubt Chicago > Shriner's is one of them. > > I'm glad to hear about 's successful surgery, Lynn. Did she have > something called a cholesteatoma? > > > At 07:31 PM 7/23/2004, you wrote: > >Lynne- > >Glad is doing well post-op. Isn't it amazing at the job-longevity > >of some of the staff at the Children's Hospitals? It says something > >about a place if they can keep folks around that long. We also enjoy > >going back. It makes me feel so much more comfortable to see the same > >faces all the time. And I'm amazed that they remember the kids. Even > >if you're a " frequent flyer " -- they still see so many kids! That's one > >thing that's making more anxious about this surgery at Shriners -- never > >been there, don't know their way of doing things, any of the staff, > >where things are, etc. But we did great at Chicago this spring so I'm > >comforting myself in knowing that all children's hospitals seem to be > >pretty great places -- unless we've been fortunate enough to be at the best. > > > >Michele W > > > Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 I completely empathize with the " what " going on...when Kennedy's aide is off at night, she doesn't even let you finish your sentence if you started it and she missed a bit, she'll say " Wait a minute, say it loud, I can't hear you! " .... and you have to put your mouth ON her ear for her to hear you. IT's funny but sometimes aggravating! Hope she enjoyed the movie (If it was " The Notebook " I'm sure she did, I've already been to see it twice!!!!!) Weir Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme. New Brunswick, Canada Weir homepage: http://ca.geocities.com/weirfamilyrogers CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca Re: 's Ear Surgeries Thanks , is back to normal except for the gauze pluged ear for the next two week plus. Her hearing in the other ear with the new PE tube isn't quite back to normal yet. Even with the aid in it she is doing a lot of " What? " We have been doing a lot of shouting today. We laugh about it. She is so good in fact she convinced me to let take her to a movie tonight. She won't be driving and as she said, " the movie will be plenty loud. " It's hard to argue. is very protective of her he will watch out for her. She has three days off from work and seems to want to put the time to good use. Lynn 's Ear Surgeries HI, We just returned from her outpatient ear surgeries ( the 28th of all different kinds of surgeries) Dr. replaced the permanent PE tube in her left ear. He removed a large grandular growth from her right ear and did what he called a mastoid revision. She has a birth defect " cavity " in her R ear. He said he turned the " cavity " into a larger area that shouldn't " collect " stuff that turns into the grandular growth. She had a similar much more extensive surgery 9 years ago. Hopefully now that her ear is fully grown he may not have to repeat this process in another few years. He isn't sure if the problem will return a third time. It's been 6 years since her last surgery( #27) a couple of the nurses remembered her and were amazed she has growen up so much. They love seeing the kids grow up. It is like a family reunion in the recovery room. is resting comfortably with pain meds. She will be in for the weekend and return to her job Mon. morning. Lots of ear drops and a post-op visit in 4 weeks. Thanks for everyone's prayers. Lynn Mom to Tom 25, cHARGE amost 20 and wife to Doug 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 I completely empathize with the " what " going on...when Kennedy's aide is off at night, she doesn't even let you finish your sentence if you started it and she missed a bit, she'll say " Wait a minute, say it loud, I can't hear you! " .... and you have to put your mouth ON her ear for her to hear you. IT's funny but sometimes aggravating! Hope she enjoyed the movie (If it was " The Notebook " I'm sure she did, I've already been to see it twice!!!!!) Weir Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme. New Brunswick, Canada Weir homepage: http://ca.geocities.com/weirfamilyrogers CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca Re: 's Ear Surgeries Thanks , is back to normal except for the gauze pluged ear for the next two week plus. Her hearing in the other ear with the new PE tube isn't quite back to normal yet. Even with the aid in it she is doing a lot of " What? " We have been doing a lot of shouting today. We laugh about it. She is so good in fact she convinced me to let take her to a movie tonight. She won't be driving and as she said, " the movie will be plenty loud. " It's hard to argue. is very protective of her he will watch out for her. She has three days off from work and seems to want to put the time to good use. Lynn 's Ear Surgeries HI, We just returned from her outpatient ear surgeries ( the 28th of all different kinds of surgeries) Dr. replaced the permanent PE tube in her left ear. He removed a large grandular growth from her right ear and did what he called a mastoid revision. She has a birth defect " cavity " in her R ear. He said he turned the " cavity " into a larger area that shouldn't " collect " stuff that turns into the grandular growth. She had a similar much more extensive surgery 9 years ago. Hopefully now that her ear is fully grown he may not have to repeat this process in another few years. He isn't sure if the problem will return a third time. It's been 6 years since her last surgery( #27) a couple of the nurses remembered her and were amazed she has growen up so much. They love seeing the kids grow up. It is like a family reunion in the recovery room. is resting comfortably with pain meds. She will be in for the weekend and return to her job Mon. morning. Lots of ear drops and a post-op visit in 4 weeks. Thanks for everyone's prayers. Lynn Mom to Tom 25, cHARGE amost 20 and wife to Doug 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 I completely empathize with the " what " going on...when Kennedy's aide is off at night, she doesn't even let you finish your sentence if you started it and she missed a bit, she'll say " Wait a minute, say it loud, I can't hear you! " .... and you have to put your mouth ON her ear for her to hear you. IT's funny but sometimes aggravating! Hope she enjoyed the movie (If it was " The Notebook " I'm sure she did, I've already been to see it twice!!!!!) Weir Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme. New Brunswick, Canada Weir homepage: http://ca.geocities.com/weirfamilyrogers CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca Re: 's Ear Surgeries Thanks , is back to normal except for the gauze pluged ear for the next two week plus. Her hearing in the other ear with the new PE tube isn't quite back to normal yet. Even with the aid in it she is doing a lot of " What? " We have been doing a lot of shouting today. We laugh about it. She is so good in fact she convinced me to let take her to a movie tonight. She won't be driving and as she said, " the movie will be plenty loud. " It's hard to argue. is very protective of her he will watch out for her. She has three days off from work and seems to want to put the time to good use. Lynn 's Ear Surgeries HI, We just returned from her outpatient ear surgeries ( the 28th of all different kinds of surgeries) Dr. replaced the permanent PE tube in her left ear. He removed a large grandular growth from her right ear and did what he called a mastoid revision. She has a birth defect " cavity " in her R ear. He said he turned the " cavity " into a larger area that shouldn't " collect " stuff that turns into the grandular growth. She had a similar much more extensive surgery 9 years ago. Hopefully now that her ear is fully grown he may not have to repeat this process in another few years. He isn't sure if the problem will return a third time. It's been 6 years since her last surgery( #27) a couple of the nurses remembered her and were amazed she has growen up so much. They love seeing the kids grow up. It is like a family reunion in the recovery room. is resting comfortably with pain meds. She will be in for the weekend and return to her job Mon. morning. Lots of ear drops and a post-op visit in 4 weeks. Thanks for everyone's prayers. Lynn Mom to Tom 25, cHARGE amost 20 and wife to Doug 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 They went to see I-Bot ( I think that was the name). I have no idea. Since she is amost 20 I don't ask. We will be in the " What? " stage for a while. She is doing well. Today she is packing. She and her long time friend from grade school, , are moving into an apartment August 1st., near her new college. She will be living 45 miles from home and about 30 miles from all her doctors. Thanks for thinking of her. Lynn 's Ear Surgeries HI, We just returned from her outpatient ear surgeries ( the 28th of all different kinds of surgeries) Dr. replaced the permanent PE tube in her left ear. He removed a large grandular growth from her right ear and did what he called a mastoid revision. She has a birth defect " cavity " in her R ear. He said he turned the " cavity " into a larger area that shouldn't " collect " stuff that turns into the grandular growth. She had a similar much more extensive surgery 9 years ago. Hopefully now that her ear is fully grown he may not have to repeat this process in another few years. He isn't sure if the problem will return a third time. It's been 6 years since her last surgery( #27) a couple of the nurses remembered her and were amazed she has growen up so much. They love seeing the kids grow up. It is like a family reunion in the recovery room. is resting comfortably with pain meds. She will be in for the weekend and return to her job Mon. morning. Lots of ear drops and a post-op visit in 4 weeks. Thanks for everyone's prayers. Lynn Mom to Tom 25, cHARGE amost 20 and wife to Doug 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 They went to see I-Bot ( I think that was the name). I have no idea. Since she is amost 20 I don't ask. We will be in the " What? " stage for a while. She is doing well. Today she is packing. She and her long time friend from grade school, , are moving into an apartment August 1st., near her new college. She will be living 45 miles from home and about 30 miles from all her doctors. Thanks for thinking of her. Lynn 's Ear Surgeries HI, We just returned from her outpatient ear surgeries ( the 28th of all different kinds of surgeries) Dr. replaced the permanent PE tube in her left ear. He removed a large grandular growth from her right ear and did what he called a mastoid revision. She has a birth defect " cavity " in her R ear. He said he turned the " cavity " into a larger area that shouldn't " collect " stuff that turns into the grandular growth. She had a similar much more extensive surgery 9 years ago. Hopefully now that her ear is fully grown he may not have to repeat this process in another few years. He isn't sure if the problem will return a third time. It's been 6 years since her last surgery( #27) a couple of the nurses remembered her and were amazed she has growen up so much. They love seeing the kids grow up. It is like a family reunion in the recovery room. is resting comfortably with pain meds. She will be in for the weekend and return to her job Mon. morning. Lots of ear drops and a post-op visit in 4 weeks. Thanks for everyone's prayers. Lynn Mom to Tom 25, cHARGE amost 20 and wife to Doug 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 They went to see I-Bot ( I think that was the name). I have no idea. Since she is amost 20 I don't ask. We will be in the " What? " stage for a while. She is doing well. Today she is packing. She and her long time friend from grade school, , are moving into an apartment August 1st., near her new college. She will be living 45 miles from home and about 30 miles from all her doctors. Thanks for thinking of her. Lynn 's Ear Surgeries HI, We just returned from her outpatient ear surgeries ( the 28th of all different kinds of surgeries) Dr. replaced the permanent PE tube in her left ear. He removed a large grandular growth from her right ear and did what he called a mastoid revision. She has a birth defect " cavity " in her R ear. He said he turned the " cavity " into a larger area that shouldn't " collect " stuff that turns into the grandular growth. She had a similar much more extensive surgery 9 years ago. Hopefully now that her ear is fully grown he may not have to repeat this process in another few years. He isn't sure if the problem will return a third time. It's been 6 years since her last surgery( #27) a couple of the nurses remembered her and were amazed she has growen up so much. They love seeing the kids grow up. It is like a family reunion in the recovery room. is resting comfortably with pain meds. She will be in for the weekend and return to her job Mon. morning. Lots of ear drops and a post-op visit in 4 weeks. Thanks for everyone's prayers. Lynn Mom to Tom 25, cHARGE amost 20 and wife to Doug 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote
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