Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 Dear Tim, Rose Margaret is currently in Ann Arbor at the Uof M Children's Hospital. She was born in East Lansing, where her parents and brother live. Her Grandparents live in Bay City. Whatever information you can share with us to assist all of us will be appreciated. Thanks so much! Tim Hartshorne wrote: Dear , Where in Michigan is Rose? We live in Mt. Pleasant, and there is a lot of support for CHARGE in this state. We have a picnic every summer for families, and my wife directs our state deaf-blind project. I know the project would be willing to be involved right away. Best, Tim Hartshorne (father of 11) bearchil@... wrote: Dear , Thank you so much for your message. I WILL order the Charge Manual for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and Aunts, Aunts and Uncles and her parents cousins as well. Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to assist. I have printed as much information as I can. I read it, then I send it to those of us that live in Texas. I would love to be with Rose and her parents. My husband is pushing me in that direction. I just don't want to be a burden to them. Today, we heard from Rose's Grandmother (my sister). When Rose was born, and a week thereafter, the "diagnosis" was that physical problems were on the left side of her little body. She had surgery last Friday to unblock her breathing passages. Her breathing tubes have been removed, however she is unable to breath and drink from a bottle at the same time. Rose is still in ICU. Her feeding tubes will remain intact. She HAS gained 6 ounces! Rose, was born with an "elf-like" ear on her left side and a closed eye on her left side. Today her Grandma told her Great-Grandma, after a hearing test (at three-days old), Rose will probably suffer from hearing loss in her right ear too. My sister (the Grandmother) also stated that there appears to be a problem with the right eye also. According to her, when Rose cries, no tears come and it's horrible! I guess I can give her my tears. The doctors have now decided some of this is due to palsy on the right side of her face. They will do more tests tomorrow. That's my update at this time. Thanks for listening and caring. I'll keep reading and sharing what yawl offer. Love, Great-Aunt of Rose (10 days old) Graeme & Weir wrote: ,Welcome to CHARGEland, and congratulations on your new baby niece. It's so great you're here already - that's a great way to help out the family. You could relay their questions to us and we will try and help as much as possible. My sister did this for me when my little Kennedy was still in the hospital and it was a big help. My outside lifeline.If you live close enough, you could always offer to go and sit with your niece for awhile so that mom & dad could get out for awhile. This would've been great (we spent almost 4 months in a hospital 6 hrs away from home ) Another great help would be to get mom & dad a CHARGE manual from the foundation (www.chargesyndrome.org) it's 20 dollars American and worth every penny. It's the most up to date-covering all areas of CHARGE book of it's kind. It will be a big help to mom & dad in learning all the stuff they will need to know. My only other advice would be not to be timid about learning to care for your niece - it may be things you never dreamed you'd be doing (tube feeds, trach care, etc). But, it really helps when you have family members who know how to do everything and you feel comfortable with so they can give you a break. Your little niece is in our thoughts! Please keep us posted when you can and let us know how she is doing. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme New Brunswick, Canada Visit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Re: Very frustrated Hello, God Bless you! I am the Great-aunt of a Charger born on Friday, October 13, 2000. My little neice is now 6 days old and has had one surgery thus far. I know little or nothing about this "thing". I just will pray for you, your baby and everyone else. If you have any ideas as to how relatives can assist in a parent of a Charger; please let me know! I feel helpless. Love, deepta_69@... wrote: > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta > > > "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter." > > 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 Dear Tim, Rose Margaret is currently in Ann Arbor at the Uof M Children's Hospital. She was born in East Lansing, where her parents and brother live. Her Grandparents live in Bay City. Whatever information you can share with us to assist all of us will be appreciated. Thanks so much! Tim Hartshorne wrote: Dear , Where in Michigan is Rose? We live in Mt. Pleasant, and there is a lot of support for CHARGE in this state. We have a picnic every summer for families, and my wife directs our state deaf-blind project. I know the project would be willing to be involved right away. Best, Tim Hartshorne (father of 11) bearchil@... wrote: Dear , Thank you so much for your message. I WILL order the Charge Manual for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and Aunts, Aunts and Uncles and her parents cousins as well. Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to assist. I have printed as much information as I can. I read it, then I send it to those of us that live in Texas. I would love to be with Rose and her parents. My husband is pushing me in that direction. I just don't want to be a burden to them. Today, we heard from Rose's Grandmother (my sister). When Rose was born, and a week thereafter, the "diagnosis" was that physical problems were on the left side of her little body. She had surgery last Friday to unblock her breathing passages. Her breathing tubes have been removed, however she is unable to breath and drink from a bottle at the same time. Rose is still in ICU. Her feeding tubes will remain intact. She HAS gained 6 ounces! Rose, was born with an "elf-like" ear on her left side and a closed eye on her left side. Today her Grandma told her Great-Grandma, after a hearing test (at three-days old), Rose will probably suffer from hearing loss in her right ear too. My sister (the Grandmother) also stated that there appears to be a problem with the right eye also. According to her, when Rose cries, no tears come and it's horrible! I guess I can give her my tears. The doctors have now decided some of this is due to palsy on the right side of her face. They will do more tests tomorrow. That's my update at this time. Thanks for listening and caring. I'll keep reading and sharing what yawl offer. Love, Great-Aunt of Rose (10 days old) Graeme & Weir wrote: ,Welcome to CHARGEland, and congratulations on your new baby niece. It's so great you're here already - that's a great way to help out the family. You could relay their questions to us and we will try and help as much as possible. My sister did this for me when my little Kennedy was still in the hospital and it was a big help. My outside lifeline.If you live close enough, you could always offer to go and sit with your niece for awhile so that mom & dad could get out for awhile. This would've been great (we spent almost 4 months in a hospital 6 hrs away from home ) Another great help would be to get mom & dad a CHARGE manual from the foundation (www.chargesyndrome.org) it's 20 dollars American and worth every penny. It's the most up to date-covering all areas of CHARGE book of it's kind. It will be a big help to mom & dad in learning all the stuff they will need to know. My only other advice would be not to be timid about learning to care for your niece - it may be things you never dreamed you'd be doing (tube feeds, trach care, etc). But, it really helps when you have family members who know how to do everything and you feel comfortable with so they can give you a break. Your little niece is in our thoughts! Please keep us posted when you can and let us know how she is doing. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme New Brunswick, Canada Visit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Re: Very frustrated Hello, God Bless you! I am the Great-aunt of a Charger born on Friday, October 13, 2000. My little neice is now 6 days old and has had one surgery thus far. I know little or nothing about this "thing". I just will pray for you, your baby and everyone else. If you have any ideas as to how relatives can assist in a parent of a Charger; please let me know! I feel helpless. Love, deepta_69@... wrote: > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta > > > "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter." > > 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 Oh my goodness! Rose was born in East Lansing and her parents reside in East Lansing. At this time she in in Ann Arbor. Please, I think it's her! I will log off now and contact her Grandparents, my sister and brother-in-law. God bless you, Cheryl Swenson wrote: > Hi! > We live in the Lansing area. We received a call from the Univ of Mich yesterday that there is a new CHARGE baby close to us and would we be willing to talk with the family. Of course the answer is YES. Maybe the child is Rose? or maybe there is yet another newborn in Michigan? Where do Rose and her family live? > > Cheryl, , (7), (5, CHaRGE) > MI > > >>> Tim.hartshorne@... 10/24/00 09:09AM >>> > Dear , > > Where in Michigan is Rose? We live in Mt. Pleasant, and there is a lot > of support for CHARGE in this state. We have a picnic every summer for > families, and my wife directs our state deaf-blind project. I know the > project would be willing to be involved right away. > > Best, > Tim Hartshorne (father of 11) > > bearchil@... wrote: > > > Dear , > > Thank you so much for your message. I WILL order the Charge Manual > > for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and > > Aunts, Aunts and Uncles and her parents cousins as well. > > > > Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, > > Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to > > assist. I have printed as much information as I can. I read it, then > > I send it to those of us that live in Texas. I would love to be with > > Rose and her parents. My husband is pushing me in that direction. I > > just don't want to be a burden to them. > > > > Today, we heard from Rose's Grandmother (my sister). When Rose was > > born, and a week thereafter, the " diagnosis " was that physical > > problems were on the left side of her little body. She had surgery > > last Friday to unblock her breathing passages. Her breathing tubes > > have been removed, however she is unable to breath and drink from a > > bottle at the same time. Rose is still in ICU. Her feeding tubes will > > remain intact. She HAS gained 6 ounces! > > > > Rose, was born with an " elf-like " ear on her left side and a closed > > eye on her left side. Today her Grandma told her Great-Grandma, after > > a hearing test (at three-days old), Rose will probably suffer from > > hearing loss in her right ear too. My sister (the Grandmother) also > > stated that there appears to be a problem with the right eye also. > > According to her, when Rose cries, no tears come and it's horrible! I > > guess I can give her my tears. The doctors have now decided some of > > this is due to palsy on the right side of her face. They will do more > > tests tomorrow. > > > > That's my update at this time. Thanks for listening and caring. I'll > > keep reading and sharing what yawl offer. > > > > Love, > > Great-Aunt of Rose (10 days old) > > > > > > Graeme & Weir wrote: > > > >> ,Welcome to CHARGEland, and congratulations on your new baby > >> niece. It's so great you're here already - that's a great way > >> to help out the family. You could relay their questions to us and > >> we will try and help as much as possible. My sister did this for me > >> when my little Kennedy was still in the hospital and it was a big > >> help. My outside lifeline.If you live close enough, you could > >> always offer to go and sit with your niece for awhile so that mom & > >> dad could get out for awhile. This would've been great (we spent > >> almost 4 months in a hospital 6 hrs away from home ) Another > >> great help would be to get mom & dad a CHARGE manual from the > >> foundation (www.chargesyndrome.org) it's 20 dollars American and > >> worth every penny. It's the most up to date-covering all areas of > >> CHARGE book of it's kind. It will be a big help to mom & dad in > >> learning all the stuff they will need to know. My only other advice > >> would be not to be timid about learning to care for your niece - it > >> may be things you never dreamed you'd be doing (tube feeds, trach > >> care, etc). But, it really helps when you have family members who > >> know how to do everything and you feel comfortable with so they can > >> give you a break. Your little niece is in our thoughts! Please > >> keep us posted when you can and let us know how she is doing. > >> Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to > >> Graeme > >> New Brunswick, Canada > >> Visit the " Weir homepage " at: > >> http://www.geocities.com/SunsetStrip/Palms/5716 > >> ICQ #1426476 > >> > >> Re: Very frustrated > >> Hello, > >> > >> God Bless you! I am the Great-aunt of a Charger born on > >> Friday, October 13, > >> 2000. My little neice is now 6 days old and has had one > >> surgery thus far. > >> > >> I know little or nothing about this " thing " . I just will > >> pray for you, your > >> baby and everyone else. If you have any ideas as to how > >> relatives can assist > >> in a parent of a Charger; please let me know! I feel > >> helpless. > >> > >> Love, > >> > >> deepta_69@... wrote: > >> > >> > Hi, > >> > I am going to vent my frustration here. I just spent 1/2 > >> hr with > >> > Amita trying to get her to taste/feed / anything. She > >> clenches her > >> > teeth and shakes her head and will do anyhting other > >> than open her > >> > mouth for taste. I know many of you are in the same boat > >> as me so you > >> > will understand. I do know all the reasons for > >> persisting and > >> > staying calm but it got to me today. I do the nuk brush > >> and all and > >> > she'll cooperate to a certain extent only. I can't talk > >> to my > >> > friends, they sympathise but do not understand the full > >> extent of > >> > what we go thru'. Sometimes I wish that magically she > >> will start > >> > eating. The problem is also that everyone (relatives, > >> parents, in- > >> > laws)keeps asking me .. Is she eating thru' the mouth > >> now? Do you > >> > give her taste? Some water? I think that all expect that > >> once you > >> > start making progress it will be very quick and the > >> button will be > >> > gone? So the '20 questions' keeps happening every week. > >> Oh, don't get > >> > me wrong here.. I do understand that all of them do this > >> out of > >> > concern for us and her, but explaing week after week > >> that no, she > >> > isn't, there is aversion, sensory isuues etc is putting > >> so much > >> > pressure on me, sometimes I just sit and cry. On top of > >> that is worry > >> > about all the other stuff... hearing, life etc. I guess > >> I am feeling > >> > overwhelmed. Any ways, it is time for her breakfast > >> now.. got to go.. > >> > thanks for listening.. > >> > Deepta > >> > > >> > > >> > " 5th CHARGE Syndrome International Conference, > >> Indianapolis, Indiana, July > >> > 20-22, 2001. Information will be available first in > >> CHARGE Accounts, the > >> > CHARGE Syndrome Foundation's newsletter. " > >> > > >> > 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 > >> > >> > >> > >> > >> > >> " 5th CHARGE Syndrome International Conference, > >> Indianapolis, Indiana, July > >> 20-22, 2001. Information will be available first in CHARGE > >> Accounts, the > >> CHARGE Syndrome Foundation's newsletter. " > >> > >> 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 > >> > >> > >> " 5th CHARGE Syndrome International Conference, Indianapolis, > >> Indiana, July > >> 20-22, 2001. Information will be available first in CHARGE Accounts, > >> the > >> CHARGE Syndrome Foundation's newsletter. " > >> > >> 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 > > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 Oh my goodness! Rose was born in East Lansing and her parents reside in East Lansing. At this time she in in Ann Arbor. Please, I think it's her! I will log off now and contact her Grandparents, my sister and brother-in-law. God bless you, Cheryl Swenson wrote: > Hi! > We live in the Lansing area. We received a call from the Univ of Mich yesterday that there is a new CHARGE baby close to us and would we be willing to talk with the family. Of course the answer is YES. Maybe the child is Rose? or maybe there is yet another newborn in Michigan? Where do Rose and her family live? > > Cheryl, , (7), (5, CHaRGE) > MI > > >>> Tim.hartshorne@... 10/24/00 09:09AM >>> > Dear , > > Where in Michigan is Rose? We live in Mt. Pleasant, and there is a lot > of support for CHARGE in this state. We have a picnic every summer for > families, and my wife directs our state deaf-blind project. I know the > project would be willing to be involved right away. > > Best, > Tim Hartshorne (father of 11) > > bearchil@... wrote: > > > Dear , > > Thank you so much for your message. I WILL order the Charge Manual > > for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and > > Aunts, Aunts and Uncles and her parents cousins as well. > > > > Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, > > Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to > > assist. I have printed as much information as I can. I read it, then > > I send it to those of us that live in Texas. I would love to be with > > Rose and her parents. My husband is pushing me in that direction. I > > just don't want to be a burden to them. > > > > Today, we heard from Rose's Grandmother (my sister). When Rose was > > born, and a week thereafter, the " diagnosis " was that physical > > problems were on the left side of her little body. She had surgery > > last Friday to unblock her breathing passages. Her breathing tubes > > have been removed, however she is unable to breath and drink from a > > bottle at the same time. Rose is still in ICU. Her feeding tubes will > > remain intact. She HAS gained 6 ounces! > > > > Rose, was born with an " elf-like " ear on her left side and a closed > > eye on her left side. Today her Grandma told her Great-Grandma, after > > a hearing test (at three-days old), Rose will probably suffer from > > hearing loss in her right ear too. My sister (the Grandmother) also > > stated that there appears to be a problem with the right eye also. > > According to her, when Rose cries, no tears come and it's horrible! I > > guess I can give her my tears. The doctors have now decided some of > > this is due to palsy on the right side of her face. They will do more > > tests tomorrow. > > > > That's my update at this time. Thanks for listening and caring. I'll > > keep reading and sharing what yawl offer. > > > > Love, > > Great-Aunt of Rose (10 days old) > > > > > > Graeme & Weir wrote: > > > >> ,Welcome to CHARGEland, and congratulations on your new baby > >> niece. It's so great you're here already - that's a great way > >> to help out the family. You could relay their questions to us and > >> we will try and help as much as possible. My sister did this for me > >> when my little Kennedy was still in the hospital and it was a big > >> help. My outside lifeline.If you live close enough, you could > >> always offer to go and sit with your niece for awhile so that mom & > >> dad could get out for awhile. This would've been great (we spent > >> almost 4 months in a hospital 6 hrs away from home ) Another > >> great help would be to get mom & dad a CHARGE manual from the > >> foundation (www.chargesyndrome.org) it's 20 dollars American and > >> worth every penny. It's the most up to date-covering all areas of > >> CHARGE book of it's kind. It will be a big help to mom & dad in > >> learning all the stuff they will need to know. My only other advice > >> would be not to be timid about learning to care for your niece - it > >> may be things you never dreamed you'd be doing (tube feeds, trach > >> care, etc). But, it really helps when you have family members who > >> know how to do everything and you feel comfortable with so they can > >> give you a break. Your little niece is in our thoughts! Please > >> keep us posted when you can and let us know how she is doing. > >> Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to > >> Graeme > >> New Brunswick, Canada > >> Visit the " Weir homepage " at: > >> http://www.geocities.com/SunsetStrip/Palms/5716 > >> ICQ #1426476 > >> > >> Re: Very frustrated > >> Hello, > >> > >> God Bless you! I am the Great-aunt of a Charger born on > >> Friday, October 13, > >> 2000. My little neice is now 6 days old and has had one > >> surgery thus far. > >> > >> I know little or nothing about this " thing " . I just will > >> pray for you, your > >> baby and everyone else. If you have any ideas as to how > >> relatives can assist > >> in a parent of a Charger; please let me know! I feel > >> helpless. > >> > >> Love, > >> > >> deepta_69@... wrote: > >> > >> > Hi, > >> > I am going to vent my frustration here. I just spent 1/2 > >> hr with > >> > Amita trying to get her to taste/feed / anything. She > >> clenches her > >> > teeth and shakes her head and will do anyhting other > >> than open her > >> > mouth for taste. I know many of you are in the same boat > >> as me so you > >> > will understand. I do know all the reasons for > >> persisting and > >> > staying calm but it got to me today. I do the nuk brush > >> and all and > >> > she'll cooperate to a certain extent only. I can't talk > >> to my > >> > friends, they sympathise but do not understand the full > >> extent of > >> > what we go thru'. Sometimes I wish that magically she > >> will start > >> > eating. The problem is also that everyone (relatives, > >> parents, in- > >> > laws)keeps asking me .. Is she eating thru' the mouth > >> now? Do you > >> > give her taste? Some water? I think that all expect that > >> once you > >> > start making progress it will be very quick and the > >> button will be > >> > gone? So the '20 questions' keeps happening every week. > >> Oh, don't get > >> > me wrong here.. I do understand that all of them do this > >> out of > >> > concern for us and her, but explaing week after week > >> that no, she > >> > isn't, there is aversion, sensory isuues etc is putting > >> so much > >> > pressure on me, sometimes I just sit and cry. On top of > >> that is worry > >> > about all the other stuff... hearing, life etc. I guess > >> I am feeling > >> > overwhelmed. Any ways, it is time for her breakfast > >> now.. got to go.. > >> > thanks for listening.. > >> > Deepta > >> > > >> > > >> > " 5th CHARGE Syndrome International Conference, > >> Indianapolis, Indiana, July > >> > 20-22, 2001. Information will be available first in > >> CHARGE Accounts, the > >> > CHARGE Syndrome Foundation's newsletter. " > >> > > >> > 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 > >> > >> > >> > >> > >> > >> " 5th CHARGE Syndrome International Conference, > >> Indianapolis, Indiana, July > >> 20-22, 2001. Information will be available first in CHARGE > >> Accounts, the > >> CHARGE Syndrome Foundation's newsletter. " > >> > >> 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 > >> > >> > >> " 5th CHARGE Syndrome International Conference, Indianapolis, > >> Indiana, July > >> 20-22, 2001. Information will be available first in CHARGE Accounts, > >> the > >> CHARGE Syndrome Foundation's newsletter. " > >> > >> 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 > > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 Hi Cheryl, I think you are going to be connected with my beautiful neice and her family and the infamous Rose. I was so excited when I read your email. I called my sister's home immediately. I spoke with my brother-in-law and he kinda thinks Rose might just be the little baby yawl are going to assist in assisting her family. Thanks and God Bless! Cheryl Swenson wrote: > Hi! > I think that that is the MI CHARGE picinic that was held in the Detroit area for a few years. > > Cheryl, , (7), (5, CHaRGE) > MI > > >>> TKRENCICK1@... 10/24/00 10:25AM >>> > Some of the Detriot area > families get together in the summer. WE have not attended yet. ck > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 Hi Cheryl, I think you are going to be connected with my beautiful neice and her family and the infamous Rose. I was so excited when I read your email. I called my sister's home immediately. I spoke with my brother-in-law and he kinda thinks Rose might just be the little baby yawl are going to assist in assisting her family. Thanks and God Bless! Cheryl Swenson wrote: > Hi! > I think that that is the MI CHARGE picinic that was held in the Detroit area for a few years. > > Cheryl, , (7), (5, CHaRGE) > MI > > >>> TKRENCICK1@... 10/24/00 10:25AM >>> > Some of the Detriot area > families get together in the summer. WE have not attended yet. ck > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 , I know how it is when there are no tears and they are bawling, Kennedy was very much like that when she was a little baby. And the palsy makes it look so much worse. I will tell you from what I've seen in a lot of the pics is that the palsy usually improves as they get older (Kennedy's has a LOT!) Also, the docs at this early of an age tend to give worst case scenarios a LOT, and sometimes they just can't accurately predict some hearing & vision losses at this point. It takes a lot of ongoing testing as the child gets older and can participate in more in depth testing. Kennedy's hearing & vision is much better than first anticipated. I'm sure that's not the way all the time, but just to let you know that it's hard for them to predict these things with 100% accuracy at this point, the same thing goes with mental abilities, etc. Tell Rose's mom & dad we are here for any questions they may have. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: Very frustratedHello, God Bless you! I am the Great-aunt of a Charger born on Friday, October 13, 2000. My little neice is now 6 days old and has had one surgery thus far. I know little or nothing about this "thing". I just will pray for you, your baby and everyone else. If you have any ideas as to how relatives can assist in a parent of a Charger; please let me know! I feel helpless. Love, deepta_69@... wrote: > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta > > > "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter." > > 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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.orgIf Rose is in Michigan, I suggest contacting Bruce at Michigan State. She's a deafblind specialist and can help - or help find help - for a baby with hearing and vision problems. Martha "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."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 Quote Link to comment Share on other sites More sharing options...
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