Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Dear , Welcome to the group, you have come to the right place if you haven't notice already. I am also a relatively new member to this group and lurk a lot more than I post, but I had to reply to you. I am mom to , 2 hearing and 19 weeks old. He also failed the newborn screening twice and than took the ABR (Baer test) and it was discovered that he has mild/severe hearing loss in both ears. Neither my husband nor I have hearing loss in our families so it was a shock to us. It turns out that Connexin 26 is the cause for us. When I was first told about 's hearing loss I was in denial, kinda. I thought that he was turning to sounds and reacting to sounds. However when he was 3 months he got his hearing aids, and I knew at moment that they turned on the aids that he was missing stuff. His eyes opened wide when the audiologist started talking. At that point I knew that getting everything early was the best thing for . We live in NY and have been working with Early Intervention for . He also has services from the Department of Education and goes to a center based program once a week. It is a little tough on but she has been really good. If you have any questions you can email me offline, it seems that we are going to be going through the same thing at the same time. Good luck Marni --- Ian and R Collin wrote: > Hi all, > > My name is and I live in the suburbs of > Philadelphia. > > My younger daughter is 1 month old and was diagnosed > with severe (maybe worse) hearing loss in both ears > last week. She failed the newborn hearing screen at > the hospital 2 times, but as we knew multiple > families whose children had failed at the hospital > and then passed upon further testing we tried not to > worry too much. We were shocked to find out at the > more involved testing that our dear girl couldn't > hear. We have no family history of hearing loss and > none of the risk factors seem to apply to us. > > We are still in the process of absorbing this > news, as I'm sure you can all imagine. I hope to > learn a lot from all of you as we move ahead and do > our best to make sure our sweet little one has every > advantage we can provide for her. > > My first question - I am currently on maternity > leave and am lucky enough to be able to take 6 > months off from work. I am due to return to my job > at the end of September. However, as I learn more > and more, I am starting to wonder if it will even be > possible for my daughter to go to daycare. Any > input? > > I look forward to learning more about your kids > and hope I will someday be a good resource for > others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones > from your PC and save big. > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Dear , Welcome to the group, you have come to the right place if you haven't notice already. I am also a relatively new member to this group and lurk a lot more than I post, but I had to reply to you. I am mom to , 2 hearing and 19 weeks old. He also failed the newborn screening twice and than took the ABR (Baer test) and it was discovered that he has mild/severe hearing loss in both ears. Neither my husband nor I have hearing loss in our families so it was a shock to us. It turns out that Connexin 26 is the cause for us. When I was first told about 's hearing loss I was in denial, kinda. I thought that he was turning to sounds and reacting to sounds. However when he was 3 months he got his hearing aids, and I knew at moment that they turned on the aids that he was missing stuff. His eyes opened wide when the audiologist started talking. At that point I knew that getting everything early was the best thing for . We live in NY and have been working with Early Intervention for . He also has services from the Department of Education and goes to a center based program once a week. It is a little tough on but she has been really good. If you have any questions you can email me offline, it seems that we are going to be going through the same thing at the same time. Good luck Marni --- Ian and R Collin wrote: > Hi all, > > My name is and I live in the suburbs of > Philadelphia. > > My younger daughter is 1 month old and was diagnosed > with severe (maybe worse) hearing loss in both ears > last week. She failed the newborn hearing screen at > the hospital 2 times, but as we knew multiple > families whose children had failed at the hospital > and then passed upon further testing we tried not to > worry too much. We were shocked to find out at the > more involved testing that our dear girl couldn't > hear. We have no family history of hearing loss and > none of the risk factors seem to apply to us. > > We are still in the process of absorbing this > news, as I'm sure you can all imagine. I hope to > learn a lot from all of you as we move ahead and do > our best to make sure our sweet little one has every > advantage we can provide for her. > > My first question - I am currently on maternity > leave and am lucky enough to be able to take 6 > months off from work. I am due to return to my job > at the end of September. However, as I learn more > and more, I am starting to wonder if it will even be > possible for my daughter to go to daycare. Any > input? > > I look forward to learning more about your kids > and hope I will someday be a good resource for > others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones > from your PC and save big. > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 I just got back from CHOP audiology today (we live in Virginia). Both of my daughters have mild hearing loss and my youngest, Sophia, 9 months, got a behavioral test today. Next step is a sedated ABR at CHOP and then we expect to get hearing aids for her. Our oldest daughter, , almost 4, wears a bone conduction hearing aid because of her phobia for all things ears. We're hoping that when Sophia has hearing aids, will become more willing to have them too. Laurie Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 I just got back from CHOP audiology today (we live in Virginia). Both of my daughters have mild hearing loss and my youngest, Sophia, 9 months, got a behavioral test today. Next step is a sedated ABR at CHOP and then we expect to get hearing aids for her. Our oldest daughter, , almost 4, wears a bone conduction hearing aid because of her phobia for all things ears. We're hoping that when Sophia has hearing aids, will become more willing to have them too. Laurie Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 I just got back from CHOP audiology today (we live in Virginia). Both of my daughters have mild hearing loss and my youngest, Sophia, 9 months, got a behavioral test today. Next step is a sedated ABR at CHOP and then we expect to get hearing aids for her. Our oldest daughter, , almost 4, wears a bone conduction hearing aid because of her phobia for all things ears. We're hoping that when Sophia has hearing aids, will become more willing to have them too. Laurie Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Hi Laurie! Do you stay locally when you travel to CHOP? Cherie Laurie Lattanzio wrote: I just got back from CHOP audiology today (we live in Virginia). Both of my daughters have mild hearing loss and my youngest, Sophia, 9 months, got a behavioral test today. Next step is a sedated ABR at CHOP and then we expect to get hearing aids for her. Our oldest daughter, , almost 4, wears a bone conduction hearing aid because of her phobia for all things ears. We're hoping that when Sophia has hearing aids, will become more willing to have them too. Laurie Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Hi Laurie! Do you stay locally when you travel to CHOP? Cherie Laurie Lattanzio wrote: I just got back from CHOP audiology today (we live in Virginia). Both of my daughters have mild hearing loss and my youngest, Sophia, 9 months, got a behavioral test today. Next step is a sedated ABR at CHOP and then we expect to get hearing aids for her. Our oldest daughter, , almost 4, wears a bone conduction hearing aid because of her phobia for all things ears. We're hoping that when Sophia has hearing aids, will become more willing to have them too. Laurie Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Today was a day trip because we just had one appointment, but we often stay at the Sheraton University City or Embassy Suites when we do cardiology for both girls b/c it's such a long day. I guess since I jumped right in I should take a moment to give some " back-story " . My girls, and Sophia, almost 4 and 9 months, respectively, have a genetic disorder called 1p36 deletion syndrome (82% of these kids have hearing loss). They also have a life threatening heart defect called non-compaction of the left ventricle and dilated cardiomyopathy. Probably way more medical info than anybody needs. Bottom line...we've been so focused on heart and some of the other problems associated with the syndrome that hearing loss has been on the back burner. Now that their health is currently stabilized, I'm trying to educate myself on the hearing issues so I can help them both. I'm really looking forward to being a part of the group and being able to give my girls everything they need to navigate through life with a hearing impairment. Laurie in Fairfax, VA Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Today was a day trip because we just had one appointment, but we often stay at the Sheraton University City or Embassy Suites when we do cardiology for both girls b/c it's such a long day. I guess since I jumped right in I should take a moment to give some " back-story " . My girls, and Sophia, almost 4 and 9 months, respectively, have a genetic disorder called 1p36 deletion syndrome (82% of these kids have hearing loss). They also have a life threatening heart defect called non-compaction of the left ventricle and dilated cardiomyopathy. Probably way more medical info than anybody needs. Bottom line...we've been so focused on heart and some of the other problems associated with the syndrome that hearing loss has been on the back burner. Now that their health is currently stabilized, I'm trying to educate myself on the hearing issues so I can help them both. I'm really looking forward to being a part of the group and being able to give my girls everything they need to navigate through life with a hearing impairment. Laurie in Fairfax, VA Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Today was a day trip because we just had one appointment, but we often stay at the Sheraton University City or Embassy Suites when we do cardiology for both girls b/c it's such a long day. I guess since I jumped right in I should take a moment to give some " back-story " . My girls, and Sophia, almost 4 and 9 months, respectively, have a genetic disorder called 1p36 deletion syndrome (82% of these kids have hearing loss). They also have a life threatening heart defect called non-compaction of the left ventricle and dilated cardiomyopathy. Probably way more medical info than anybody needs. Bottom line...we've been so focused on heart and some of the other problems associated with the syndrome that hearing loss has been on the back burner. Now that their health is currently stabilized, I'm trying to educate myself on the hearing issues so I can help them both. I'm really looking forward to being a part of the group and being able to give my girls everything they need to navigate through life with a hearing impairment. Laurie in Fairfax, VA Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Do you see Genetics at CHOP? Laurie Lattanzio wrote: Today was a day trip because we just had one appointment, but we often stay at the Sheraton University City or Embassy Suites when we do cardiology for both girls b/c it's such a long day. I guess since I jumped right in I should take a moment to give some " back-story " . My girls, and Sophia, almost 4 and 9 months, respectively, have a genetic disorder called 1p36 deletion syndrome (82% of these kids have hearing loss). They also have a life threatening heart defect called non-compaction of the left ventricle and dilated cardiomyopathy. Probably way more medical info than anybody needs. Bottom line...we've been so focused on heart and some of the other problems associated with the syndrome that hearing loss has been on the back burner. Now that their health is currently stabilized, I'm trying to educate myself on the hearing issues so I can help them both. I'm really looking forward to being a part of the group and being able to give my girls everything they need to navigate through life with a hearing impairment. Laurie in Fairfax, VA Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Do you see Genetics at CHOP? Laurie Lattanzio wrote: Today was a day trip because we just had one appointment, but we often stay at the Sheraton University City or Embassy Suites when we do cardiology for both girls b/c it's such a long day. I guess since I jumped right in I should take a moment to give some " back-story " . My girls, and Sophia, almost 4 and 9 months, respectively, have a genetic disorder called 1p36 deletion syndrome (82% of these kids have hearing loss). They also have a life threatening heart defect called non-compaction of the left ventricle and dilated cardiomyopathy. Probably way more medical info than anybody needs. Bottom line...we've been so focused on heart and some of the other problems associated with the syndrome that hearing loss has been on the back burner. Now that their health is currently stabilized, I'm trying to educate myself on the hearing issues so I can help them both. I'm really looking forward to being a part of the group and being able to give my girls everything they need to navigate through life with a hearing impairment. Laurie in Fairfax, VA Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Do you see Genetics at CHOP? Laurie Lattanzio wrote: Today was a day trip because we just had one appointment, but we often stay at the Sheraton University City or Embassy Suites when we do cardiology for both girls b/c it's such a long day. I guess since I jumped right in I should take a moment to give some " back-story " . My girls, and Sophia, almost 4 and 9 months, respectively, have a genetic disorder called 1p36 deletion syndrome (82% of these kids have hearing loss). They also have a life threatening heart defect called non-compaction of the left ventricle and dilated cardiomyopathy. Probably way more medical info than anybody needs. Bottom line...we've been so focused on heart and some of the other problems associated with the syndrome that hearing loss has been on the back burner. Now that their health is currently stabilized, I'm trying to educate myself on the hearing issues so I can help them both. I'm really looking forward to being a part of the group and being able to give my girls everything they need to navigate through life with a hearing impairment. Laurie in Fairfax, VA Re: Introduction Thanks for the welcome, Cherie! We are going to CHOP for all of our hearing-related appts. Carys (my daughter) is being fitted with her first set of hearing aids in a few weeks. I can't imagine a 2 month old with a set of hearing aids, but we'll see how it goes. This is all just a lot to absorb right now - I'm sure you understand. > Hi all, > > My name is and I live in the suburbs of Philadelphia. > > My younger daughter is 1 month old and was diagnosed with severe (maybe worse) hearing loss in both ears last week. She failed the newborn hearing screen at the hospital 2 times, but as we knew multiple families whose children had failed at the hospital and then passed upon further testing we tried not to worry too much. We were shocked to find out at the more involved testing that our dear girl couldn't hear. We have no family history of hearing loss and none of the risk factors seem to apply to us. > > We are still in the process of absorbing this news, as I'm sure you can all imagine. I hope to learn a lot from all of you as we move ahead and do our best to make sure our sweet little one has every advantage we can provide for her. > > My first question - I am currently on maternity leave and am lucky enough to be able to take 6 months off from work. I am due to return to my job at the end of September. However, as I learn more and more, I am starting to wonder if it will even be possible for my daughter to go to daycare. Any input? > > I look forward to learning more about your kids and hope I will someday be a good resource for others as well. Thanks! > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 Welcome Laurie, sounds like you and Trish will have a lot in common with hearing and heart issues. Glad you found us and hope we can help you out along the way. in GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 Welcome Laurie, sounds like you and Trish will have a lot in common with hearing and heart issues. Glad you found us and hope we can help you out along the way. in GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 Welcome Laurie, sounds like you and Trish will have a lot in common with hearing and heart issues. Glad you found us and hope we can help you out along the way. in GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 welcome to this group!!!!! I just joined about 3 weeks ago after my lumpectomy and these women have helped me more then they know. I thank them all from the bottom of my heart. I will continue to come here for support and your kind words of well wishes...still in tears daily but i know there are others thinking of me and praying for me as i am for them. Hugs to all.. kassy --------------------------------- Stay in the know. Pulse on the new Yahoo.com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Hi , I was diagnosed one day after you, Sept. 19th. The surgeon in my home town wanted to do a lumpectomy. I chose to go for a second op. at u of Chicago. After MRI, it was decided I would need a mastectomy. All that is happened so far was a sentinel node biopsy which came back funky. THe whole team is discussing me this morning and I will find if more nodes need to come out later today. I am praying not as the side effects of that can be yucky. But, I will do what I need to do to save my life. I will have my mastec. within two weeks. I should find out that date this week as well. I guess the advice I am trying to give myself and will give you, is that; this is a rollercoaster ride and we have to be very patient, taking one day at a time. I have always been a planner and a bit obsessive, so I have put this in God's hands and will try to stay calm! God Bless You, Sandi > > Hi, > > My name is Hogan, 55 years old and live in > Salt Lake City, Utah. On September 18 I was > diagnosed with breast cancer. On Sept 25 I had a > lumpectomy and 2 lymph nodes removed. I have > stage 3 invasive ductal carcinoma. One node was > clean, the other was not. Last Friday, I went in > again for more surgery to have more nodes > removed. I have not heard back from pathology on > those yet. > > I am looking for a group to share my experience > with and to find some support. I was, am still > stunned to find out I have breast cancer. It > never occurred to me that it could happen to me. > My profile risk is in the lowest risk category > and there's no history of it in my family, until > now. I've been told that I need chemo, a > masectomy, radiation and reconstruction if I want > it. I am suppose to start chemo on November 7. > > What's kind of interesting is that I worked for > the Cancer Center here for over 10 years and > still work within a university research area so > this shouldn't come much as a surprise to me but > I am just starting to realize how much I really > don't know. > > So I am looking forward to learning from you all > and in turn help to support others. > > Thank you, > > > and her Wonderful Wascally Weasels > Frontier Ferrets Rescue and Shelter > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Charlene welcoem to the group. That was a horrible thing for that lady to say. Thats enough to scare a person to death. Furthermore was she positive it was from chemo? I am a 16 yr survivor and have never heard of that. If a person is going to have breast cancer in situ is the best kind to have. I had infiltrating ductal carcnoma, Stage II, Grade II. I will keep you in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html BreastCancerStories.com http://www.breastcancerstories.com/content/view/433/161/ Angel Feather Loomer www.angelfeatherloomer.blogspot.com Check out my other ornaments at www.geocities.com/chucky5741/bcornament.html Lots of info and gifts at: www.cancerclub.com Introduction Good morning all. I've been reading posts for several days and thought it was time to introduce myself instead of just lurking. My name is Charlene and I live in central Texas. I am the mother of 3 grown sons and grandmother to 2 little girls. I had a surgical biopsy on 9/14 that showed Invasive Ductal Carcinoma, Grade 2. It mentioned intermediate to high nuclear grade but I don't know what that means. It also mention in situ. Since then I have had a lumpectomy, bone scan, liver scan and a muga scan to make sure my heart was ok for chemo (previous heart problems). I begin chemo (AC) this coming Thursday, then radiation and 5 years of hormone therapy. I am really getting anxious about starting the chemo. I was in church Sunday and a lady told me about a friend of her's that died of a massive heart attack one week after her first chemo. I don't understand why someone would say such a thing to a person beginning the same procedure. She is a very sweet lady, I know she meant well... but dang that is hard to swallow. I kinda had a meltdown yesterday. I suppose that is par for the course. Today should be better. A friend is giving me a massage and a facial. (I'm a massage therapist and we do trades.) I'm glad to have found this group. I want you all to know I'm thinking of you and praying for you. Charlene ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.409 / Virus Database: 268.13.30/521 - Release Date: 11/7/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Charlene - Welcome to the group! I really can't believe that someone in church told you that - how awful. I tell ya - some people should just know when to keep quiet. You are perfectly normal to be feeling the anxiety that you are about beginning your treatment. I had 4 doses of A/C chemo, radiation, and am now taking an A/I for 5 years. I'm 48 years old, 4 kids at home (in their teens). I'm here to tell you - you're going to be okay! You should try to associate yourself with people who can understand what you're going through - although I know that is not always possible. What I tried to do was initially, keep my friends and family close (the one's who provided me the support I needed) and shy away from the contact of those who either just don't know what to say (because it was more comfortable for them) or just say the wrong things! I had a couple of those " friends " who I've just limited myself talking to about my B/C. I've discovered that it's just that THEY can't handle it - not me. This is a great resource for your concerns, questions, hopes and the women in this forum have been through much of what you have gone through already and will be facing in the future. We're here for ya! Best of luck! Hugs! Ellen > > Good morning all. I've been reading posts for several days and > thought it was time to introduce myself instead of just lurking. > > My name is Charlene and I live in central Texas. I am the mother of 3 > grown sons and grandmother to 2 little girls. I had a surgical biopsy > on 9/14 that showed Invasive Ductal Carcinoma, Grade 2. It mentioned > intermediate to high nuclear grade but I don't know what that means. > It also mention in situ. Since then I have had a lumpectomy, bone > scan, liver scan and a muga scan to make sure my heart was ok for > chemo (previous heart problems). > > I begin chemo (AC) this coming Thursday, then radiation and 5 years of > hormone therapy. I am really getting anxious about starting the > chemo. I was in church Sunday and a lady told me about a friend of > her's that died of a massive heart attack one week after her first > chemo. I don't understand why someone would say such a thing to a > person beginning the same procedure. She is a very sweet lady, I know > she meant well... but dang that is hard to swallow. > > I kinda had a meltdown yesterday. I suppose that is par for the > course. Today should be better. A friend is giving me a massage and > a facial. (I'm a massage therapist and we do trades.) > > I'm glad to have found this group. I want you all to know I'm > thinking of you and praying for you. > > Charlene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Hi, Charlene - Maybe I shouldn't smile, but I couldn't help it when I read your line: " I don't understand why someone would say such a thing to a person beginning the same procedure. " I smiled because there was a woman where I used to work, and whenever anyone mentioned an illness she would say " I knew someone who had that - they died of it! " She was serious, I think, but nobody took her seriously, she was so predictable. I think some people just say what comes into their mind, without thinking about the effect it'll have on their listeners; and I'm sure that your lady's friend's heart attack was just a sad coincidence. Now try not to worry too much about your own chemo (easy to say, I know). It affects everyone differently; and either you'll sail through it or you'll feel bad for a while and then get over it. I had chemo for 11 months; some was bad, some was easy, and I'm over most of that now. I'm back on chemo again (Xeloda tablets) and that is really easy. Here's an e-hug for Thursday: (((0))) Love, Margery. ============================================ margery@... in North Herts, UK ============================================ > Introduction > > Good morning all. I've been reading posts for several days and > thought it was time to introduce myself instead of just lurking. > > My name is Charlene and I live in central Texas. I am the > mother of 3 > grown sons and grandmother to 2 little girls. I had a > surgical biopsy > on 9/14 that showed Invasive Ductal Carcinoma, Grade 2. It mentioned > intermediate to high nuclear grade but I don't know what that means. > It also mention in situ. Since then I have had a lumpectomy, bone > scan, liver scan and a muga scan to make sure my heart was ok for > chemo (previous heart problems). > > I begin chemo (AC) this coming Thursday, then radiation and 5 > years of > hormone therapy. I am really getting anxious about starting the > chemo. I was in church Sunday and a lady told me about a friend of > her's that died of a massive heart attack one week after her first > chemo. I don't understand why someone would say such a thing to a > person beginning the same procedure. She is a very sweet > lady, I know > she meant well... but dang that is hard to swallow. > > I kinda had a meltdown yesterday. I suppose that is par for the > course. Today should be better. A friend is giving me a massage and > a facial. (I'm a massage therapist and we do trades.) > > I'm glad to have found this group. I want you all to know I'm > thinking of you and praying for you. > > Charlene > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Hi Charlene and welcome... My name is , age 55, diagnosed with Stage 3 Invasive Ductal Carcinoma on 09-18-2006. I've had two surgeries, one to remove the tumor and a couple of lymph nodes and then another surgery to remove 11 more lymph nodes. Cancer was found only in one lymph node. Nuclear grade 2, tubule formation 3, and mitotic rate 3. Histologic grade - poorly differentiated. ER negative, Progesterone receptor borderline (10%), Her-2/neu negative. Anyway my treatment plan was first the surgeries, then chemo, then a mastectomy, then radiation, and then reconstruction if I want it. Anyway I just want to let you that yesterday was my first chemo treatment. I was very nervous and anxious about the whole process. As it turns it was not nearly as bad as I thought it was going to be. The worse part was all the time it took. Today I have a slight headache that is manageable and so far no nausea. So all in all things seem okay so far. I am on A/C for 4 treatments and then Taxol for 4 treatments. Yes, the treatment can cause heart problems in about 1% of patients but you can ask your doctor to perform a MUGA or EKG or both if you have any concerns about your heart. I had both done and my heart acted and looked normal. You have every right to ask your doctor to do the things that will help you feel comfortable with your course of treatment. Before any chemo treatments, they should be doing a full physical check up and blood labs to monitor your blood levels. As it turn out my fear was worse than what actually happened. The side effects may get worse with each treatment but for my first 24 hours...it's been fine. So I hope and pray the same for you. Hugs, charlenemickan <no_reply > wrote: Good morning all. I've been reading posts for several days and thought it was time to introduce myself instead of just lurking. My name is Charlene and I live in central Texas. I am the mother of 3 grown sons and grandmother to 2 little girls. I had a surgical biopsy on 9/14 that showed Invasive Ductal Carcinoma, Grade 2. It mentioned intermediate to high nuclear grade but I don't know what that means. It also mention in situ. Since then I have had a lumpectomy, bone scan, liver scan and a muga scan to make sure my heart was ok for chemo (previous heart problems). I begin chemo (AC) this coming Thursday, then radiation and 5 years of hormone therapy. I am really getting anxious about starting the chemo. I was in church Sunday and a lady told me about a friend of her's that died of a massive heart attack one week after her first chemo. I don't understand why someone would say such a thing to a person beginning the same procedure. She is a very sweet lady, I know she meant well... but dang that is hard to swallow. I kinda had a meltdown yesterday. I suppose that is par for the course. Today should be better. A friend is giving me a massage and a facial. (I'm a massage therapist and we do trades.) I'm glad to have found this group. I want you all to know I'm thinking of you and praying for you. Charlene and her Wonderful Wascally Weasels Frontier Ferrets Rescue and Shelter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Robin, You are not being whiny. Everyone has different reactions to the chemo. I had CMF and had absolutely no problems. I believe there are other ladies in the group having problems with the Arimidex. I will keep you in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html BreastCancerStories.com http://www.breastcancerstories.com/content/view/433/161/ Angel Feather Loomer www.angelfeatherloomer.blogspot.com Check out my other ornaments at www.geocities.com/chucky5741/bcornament.html Lots of info and gifts at: www.cancerclub.com Introduction Hi I am Robin, I found out about 3 weeks ago that I had breast cancer. I had surgery 2 weeks ago this Friday. My how things have changed when you go to surgery and come home the same day :-0 I had partial mastectomy as they removed more breast tissue then a lumpectomy. And they removed two lymph nodes to check them. It took 10 days to get the final report back about the nodes, so that was kind of scary. Happy to report that it was stage 1 and the nodes not involved.I went to see the oncoligist and he decided to put me on Arimidex since my hormone receptors were positive. In my case that was suppose to be a good thing. I went Friday out of town to the radioligist and am going to start radiation treatments the week of Thanksgiving, (which I had requested I wanted to wait till the next week ) But everyone is worried about the weather throughout the treatment time so wanted me to get started. It is about an hour drive back and forth. I have only been on the Arimidex for about 5 days and already don't like it. It makes me really tired, or maybe that is all in my mind. I knew about the joint pains, and have read on here about other side effects. Wondered if anyone else got tired from it, or it is just because of my fibromyligia (misspelled) or just a reaction I am having to it. I had surgery on this same side almost 30 years ago, that time I was lucky and it was not cancer. I have fibrorous breasts, and have always had a problem wtih this one. I nursed my last two children, and had mastitis several times, so this was not a complete shock when it happened. Plus my sister who is 11 years older than me had breast cancer on the same side, at my age. I stuggled as to whether to have the whole thing taken off, but the doctors seem to think I would be happier this way. I was told then I would not have to have the radiation. I figured at my age (64) it would be ok to have the breast removed, but had only few days to make my mind up, and went with what my surgeon and husband thougth I should do. So that is my story, and I have seen so many brave ladies on here, talking about chemo, something I am scared of. So I feel very lucky, and like I am really whiny to even mention the drug I don't like :-0 Robin ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.409 / Virus Database: 268.14.3/530 - Release Date: 11/11/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Hi Robin, I too am new to this site and was just dianosed with stage 1 and no lymph nodes involvement. I see the oncologist tomorrow. Introduction Hi I am Robin, I found out about 3 weeks ago that I had breast cancer. I had surgery 2 weeks ago this Friday. My how things have changed when you go to surgery and come home the same day :-0 I had partial mastectomy as they removed more breast tissue then a lumpectomy. And they removed two lymph nodes to check them. It took 10 days to get the final report back about the nodes, so that was kind of scary. Happy to report that it was stage 1 and the nodes not involved.I went to see the oncoligist and he decided to put me on Arimidex since my hormone receptors were positive. In my case that was suppose to be a good thing. I went Friday out of town to the radioligist and am going to start radiation treatments the week of Thanksgiving, (which I had requested I wanted to wait till the next week ) But everyone is worried about the weather throughout the treatment time so wanted me to get started. It is about an hour drive back and forth. I have only been on the Arimidex for about 5 days and already don't like it. It makes me really tired, or maybe that is all in my mind. I knew about the joint pains, and have read on here about other side effects. Wondered if anyone else got tired from it, or it is just because of my fibromyligia (misspelled) or just a reaction I am having to it. I had surgery on this same side almost 30 years ago, that time I was lucky and it was not cancer. I have fibrorous breasts, and have always had a problem wtih this one. I nursed my last two children, and had mastitis several times, so this was not a complete shock when it happened. Plus my sister who is 11 years older than me had breast cancer on the same side, at my age. I stuggled as to whether to have the whole thing taken off, but the doctors seem to think I would be happier this way. I was told then I would not have to have the radiation. I figured at my age (64) it would be ok to have the breast removed, but had only few days to make my mind up, and went with what my surgeon and husband thougth I should do. So that is my story, and I have seen so many brave ladies on here, talking about chemo, something I am scared of. So I feel very lucky, and like I am really whiny to even mention the drug I don't like :-0 Robin ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.409 / Virus Database: 268.14.3/530 - Release Date: 11/11/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 >Hi Jude Let me know how it goes with your oncologist. If you want to write me at my email address please do. Seems we are in the same stage, and I feel really lucky that we caught it in time. Hope to hear from you Robin > Hi Robin, I too am new to this site and was just dianosed with stage 1 and no lymph nodes involvement. I see the oncologist tomorrow. > Introduction > > > > > > > > > > > > > > -------------------------------------------------------------------- ---------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.409 / Virus Database: 268.14.3/530 - Release Date: 11/11/2006 > > > Quote Link to comment Share on other sites More sharing options...
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