Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 Aubrie loves Barney most, but also likes many other characters. She loves the computer. It's not her lack of interest holding us back -- it's my lack of drive. I just haven't taken the time to work on with her. We are fortunate to belong to a toy/computer lending program here so we've got several children's programs on loan rather than having to purchase them. We also have an intelli-keys that I planned on working on but didn't get to. Now that I'm thinking about it, I should spend some time each day for the next week or so until her IEP meeting. We will be discussing technology. I'd be great if I could prove her skill level by then. Michele (unknown) > > > > Hi , > > We go to Children's. is on schedule for eye surgery. Outpt - > > strabismus. We see Dr. Greg. I have talked with the family you > > mentioned but never met them. I also checked into the orthoptist > > that several people mentioned on the list. It seems that an > > orthoptist is to a pediatric opthomalogist what a chiropracter is to > > a neurosurgeon. Not to say that we won't pursue this also, it just > > seems that they don't work together much. I called for a referral to > > one locally and had a very difficult time finding one. I was able to > > find at least one but it may be difficult to get in and have it paid > > for by insurance. Comes under the category of " vision therapy " and > > may be difficult to fund. It may be worthwhile to go once or twice, > > pay out of pocket, and at least try and learn some of the exercises. > > is doing well otherwise with his implant; learning to talk > > and sign. Using about 50 words spontaneously a day and has learned > > about 400 words/signs in the last few months but it is so much > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 Good luck Michele, knowing Aubrie I'm sure she'll fly with it as soon as she realizes how fun it is.... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 (unknown) > > > > Hi , > > We go to Children's. is on schedule for eye surgery. Outpt - > > strabismus. We see Dr. Greg. I have talked with the family you > > mentioned but never met them. I also checked into the orthoptist > > that several people mentioned on the list. It seems that an > > orthoptist is to a pediatric opthomalogist what a chiropracter is to > > a neurosurgeon. Not to say that we won't pursue this also, it just > > seems that they don't work together much. I called for a referral to > > one locally and had a very difficult time finding one. I was able to > > find at least one but it may be difficult to get in and have it paid > > for by insurance. Comes under the category of " vision therapy " and > > may be difficult to fund. It may be worthwhile to go once or twice, > > pay out of pocket, and at least try and learn some of the exercises. > > is doing well otherwise with his implant; learning to talk > > and sign. Using about 50 words spontaneously a day and has learned > > about 400 words/signs in the last few months but it is so much > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 I was wondering what the company or whatever is that you all have that lend you toys to you, that would be great for Brittney, we have trouble finding toys that she likes or helps her want to sit up and when she lays on her belly to get her to hold up her head and put weight on her hands.. Tina mom to Cody 2y, Brittney 1y CHARgE and wife to .. > Aubrie loves Barney most, but also likes many other characters. She loves > the computer. It's not her lack of interest holding us back -- it's my lack > of drive. I just haven't taken the time to work on with her. We are > fortunate to belong to a toy/computer lending program here so we've got > several children's programs on loan rather than having to purchase them. We > also have an intelli-keys that I planned on working on but didn't get to. > > Now that I'm thinking about it, I should spend some time each day for the > next week or so until her IEP meeting. We will be discussing technology. > I'd be great if I could prove her skill level by then. > > Michele > (unknown) > > > > > > > Hi , > > > We go to Children's. is on schedule for eye surgery. Outpt - > > > strabismus. We see Dr. Greg. I have talked with the family you > > > mentioned but never met them. I also checked into the orthoptist > > > that several people mentioned on the list. It seems that an > > > orthoptist is to a pediatric opthomalogist what a chiropracter is to > > > a neurosurgeon. Not to say that we won't pursue this also, it just > > > seems that they don't work together much. I called for a referral to > > > one locally and had a very difficult time finding one. I was able to > > > find at least one but it may be difficult to get in and have it paid > > > for by insurance. Comes under the category of " vision therapy " and > > > may be difficult to fund. It may be worthwhile to go once or twice, > > > pay out of pocket, and at least try and learn some of the exercises. > > > is doing well otherwise with his implant; learning to talk > > > and sign. Using about 50 words spontaneously a day and has learned > > > about 400 words/signs in the last few months but it is so much > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > Membership of this email support groups does not constitute membership > in > > the CHARGE Syndrome Foundation. > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the newsletter) > > > please contact marion@c... or visit > > > the CHARGE Syndrome Foundation web page > > > at http://www.chargesyndrome.org > > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > > July 25-27, 2003. Information will be available at our website > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 Tina- We use Lekotek. I think it's a national program. Ours is run through the UCP office. I'm not sure how I got connected to them. You might try your area UCP office. BTW-- UCP is not just for folks with cerebal palsy as I used to think -- it's for all disabilities. I don't know if you'd find Lekotek in the phone book or online. The best bet may be to ask around to your therapists etc to see if anyone is aware of a Lekotek program in your area. It has been wonderful. Aubrie used one of the cause-and-effect toys they have for kids with vision and hearing deficits. It was the first toy that got her attention. Without it, she would have taken much longer to learn the concept of cause-and-effect because she couldn't manipulate typcial baby toys of that type. Michele W Aubrie's mom (unknown) > > > > > > > > > > Hi , > > > > We go to Children's. is on schedule for eye > surgery. Outpt - > > > > strabismus. We see Dr. Greg. I have talked with the family > you > > > > mentioned but never met them. I also checked into the > orthoptist > > > > that several people mentioned on the list. It seems that an > > > > orthoptist is to a pediatric opthomalogist what a > chiropracter is to > > > > a neurosurgeon. Not to say that we won't pursue this also, > it just > > > > seems that they don't work together much. I called for a > referral to > > > > one locally and had a very difficult time finding one. I was > able to > > > > find at least one but it may be difficult to get in and have > it paid > > > > for by insurance. Comes under the category of " vision > therapy " and > > > > may be difficult to fund. It may be worthwhile to go once > or twice, > > > > pay out of pocket, and at least try and learn some of the > exercises. > > > > is doing well otherwise with his implant; learning > to talk > > > > and sign. Using about 50 words spontaneously a day and has > learned > > > > about 400 words/signs in the last few months but it is so > much > > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute > membership > > in > > > the CHARGE Syndrome Foundation. > > > > For information about the CHARGE Syndrome > > > > Foundation or to become a member (and get the newsletter) > > > > please contact marion@c... or visit > > > > the CHARGE Syndrome Foundation web page > > > > at http://www.chargesyndrome.org > > > > 6th International CHARGE Syndrome Conference, Cleveland, > Ohio, > > > > July 25-27, 2003. Information will be available at our > website > > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 Tina, In NC Jillyan is followed by Iredell County Mental Health -- that is where we get our free PT for her through the state. They have a lending library with toys, durable medical equipment, feeder seats, light boxes with learning materials. We can borrow what ever we need. If you are getting assistance through your county/state they should be able to put you in touch with someone. Huggins Wife to Robin, Mom to Hailey (5) and Jillyan (15 months) Re: (unknown) I was wondering what the company or whatever is that you all have that lend you toys to you, that would be great for Brittney, we have trouble finding toys that she likes or helps her want to sit up and when she lays on her belly to get her to hold up her head and put weight on her hands.. Tina mom to Cody 2y, Brittney 1y CHARgE and wife to .. > Aubrie loves Barney most, but also likes many other characters. She loves > the computer. It's not her lack of interest holding us back -- it's my lack > of drive. I just haven't taken the time to work on with her. We are > fortunate to belong to a toy/computer lending program here so we've got > several children's programs on loan rather than having to purchase them. We > also have an intelli-keys that I planned on working on but didn't get to. > > Now that I'm thinking about it, I should spend some time each day for the > next week or so until her IEP meeting. We will be discussing technology. > I'd be great if I could prove her skill level by then. > > Michele > (unknown) > > > > > > > Hi , > > > We go to Children's. is on schedule for eye surgery. Outpt - > > > strabismus. We see Dr. Greg. I have talked with the family you > > > mentioned but never met them. I also checked into the orthoptist > > > that several people mentioned on the list. It seems that an > > > orthoptist is to a pediatric opthomalogist what a chiropracter is to > > > a neurosurgeon. Not to say that we won't pursue this also, it just > > > seems that they don't work together much. I called for a referral to > > > one locally and had a very difficult time finding one. I was able to > > > find at least one but it may be difficult to get in and have it paid > > > for by insurance. Comes under the category of " vision therapy " and > > > may be difficult to fund. It may be worthwhile to go once or twice, > > > pay out of pocket, and at least try and learn some of the exercises. > > > is doing well otherwise with his implant; learning to talk > > > and sign. Using about 50 words spontaneously a day and has learned > > > about 400 words/signs in the last few months but it is so much > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > Membership of this email support groups does not constitute membership > in > > the CHARGE Syndrome Foundation. > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the newsletter) > > > please contact marion@c... or visit > > > the CHARGE Syndrome Foundation web page > > > at http://www.chargesyndrome.org > > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > > July 25-27, 2003. Information will be available at our website > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 Tina, In NC Jillyan is followed by Iredell County Mental Health -- that is where we get our free PT for her through the state. They have a lending library with toys, durable medical equipment, feeder seats, light boxes with learning materials. We can borrow what ever we need. If you are getting assistance through your county/state they should be able to put you in touch with someone. Huggins Wife to Robin, Mom to Hailey (5) and Jillyan (15 months) Re: (unknown) I was wondering what the company or whatever is that you all have that lend you toys to you, that would be great for Brittney, we have trouble finding toys that she likes or helps her want to sit up and when she lays on her belly to get her to hold up her head and put weight on her hands.. Tina mom to Cody 2y, Brittney 1y CHARgE and wife to .. > Aubrie loves Barney most, but also likes many other characters. She loves > the computer. It's not her lack of interest holding us back -- it's my lack > of drive. I just haven't taken the time to work on with her. We are > fortunate to belong to a toy/computer lending program here so we've got > several children's programs on loan rather than having to purchase them. We > also have an intelli-keys that I planned on working on but didn't get to. > > Now that I'm thinking about it, I should spend some time each day for the > next week or so until her IEP meeting. We will be discussing technology. > I'd be great if I could prove her skill level by then. > > Michele > (unknown) > > > > > > > Hi , > > > We go to Children's. is on schedule for eye surgery. Outpt - > > > strabismus. We see Dr. Greg. I have talked with the family you > > > mentioned but never met them. I also checked into the orthoptist > > > that several people mentioned on the list. It seems that an > > > orthoptist is to a pediatric opthomalogist what a chiropracter is to > > > a neurosurgeon. Not to say that we won't pursue this also, it just > > > seems that they don't work together much. I called for a referral to > > > one locally and had a very difficult time finding one. I was able to > > > find at least one but it may be difficult to get in and have it paid > > > for by insurance. Comes under the category of " vision therapy " and > > > may be difficult to fund. It may be worthwhile to go once or twice, > > > pay out of pocket, and at least try and learn some of the exercises. > > > is doing well otherwise with his implant; learning to talk > > > and sign. Using about 50 words spontaneously a day and has learned > > > about 400 words/signs in the last few months but it is so much > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > Membership of this email support groups does not constitute membership > in > > the CHARGE Syndrome Foundation. > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the newsletter) > > > please contact marion@c... or visit > > > the CHARGE Syndrome Foundation web page > > > at http://www.chargesyndrome.org > > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > > July 25-27, 2003. Information will be available at our website > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 Tina, In NC Jillyan is followed by Iredell County Mental Health -- that is where we get our free PT for her through the state. They have a lending library with toys, durable medical equipment, feeder seats, light boxes with learning materials. We can borrow what ever we need. If you are getting assistance through your county/state they should be able to put you in touch with someone. Huggins Wife to Robin, Mom to Hailey (5) and Jillyan (15 months) Re: (unknown) I was wondering what the company or whatever is that you all have that lend you toys to you, that would be great for Brittney, we have trouble finding toys that she likes or helps her want to sit up and when she lays on her belly to get her to hold up her head and put weight on her hands.. Tina mom to Cody 2y, Brittney 1y CHARgE and wife to .. > Aubrie loves Barney most, but also likes many other characters. She loves > the computer. It's not her lack of interest holding us back -- it's my lack > of drive. I just haven't taken the time to work on with her. We are > fortunate to belong to a toy/computer lending program here so we've got > several children's programs on loan rather than having to purchase them. We > also have an intelli-keys that I planned on working on but didn't get to. > > Now that I'm thinking about it, I should spend some time each day for the > next week or so until her IEP meeting. We will be discussing technology. > I'd be great if I could prove her skill level by then. > > Michele > (unknown) > > > > > > > Hi , > > > We go to Children's. is on schedule for eye surgery. Outpt - > > > strabismus. We see Dr. Greg. I have talked with the family you > > > mentioned but never met them. I also checked into the orthoptist > > > that several people mentioned on the list. It seems that an > > > orthoptist is to a pediatric opthomalogist what a chiropracter is to > > > a neurosurgeon. Not to say that we won't pursue this also, it just > > > seems that they don't work together much. I called for a referral to > > > one locally and had a very difficult time finding one. I was able to > > > find at least one but it may be difficult to get in and have it paid > > > for by insurance. Comes under the category of " vision therapy " and > > > may be difficult to fund. It may be worthwhile to go once or twice, > > > pay out of pocket, and at least try and learn some of the exercises. > > > is doing well otherwise with his implant; learning to talk > > > and sign. Using about 50 words spontaneously a day and has learned > > > about 400 words/signs in the last few months but it is so much > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > Membership of this email support groups does not constitute membership > in > > the CHARGE Syndrome Foundation. > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the newsletter) > > > please contact marion@c... or visit > > > the CHARGE Syndrome Foundation web page > > > at http://www.chargesyndrome.org > > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > > July 25-27, 2003. Information will be available at our website > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 , Are you talking about something like early intervention, that is funded by the state, Britt has that and someone comes in like therapy and works with her once a week on her over all development. We can get feeder seats and a we have a corner chair, we love the corner chair--she loves to set in the chair and watch cartoons. I did not know they had toys that you can use too. If it is like early intervention. Thanks for that info. Tina Deskins mom to Cody 2y, Brittney 1y CHARgE, and wife to . > > Aubrie loves Barney most, but also likes many other characters. > She loves > > the computer. It's not her lack of interest holding us back -- > it's my lack > > of drive. I just haven't taken the time to work on with her. We > are > > fortunate to belong to a toy/computer lending program here so > we've got > > several children's programs on loan rather than having to purchase > them. We > > also have an intelli-keys that I planned on working on but didn't > get to. > > > > Now that I'm thinking about it, I should spend some time each day > for the > > next week or so until her IEP meeting. We will be discussing > technology. > > I'd be great if I could prove her skill level by then. > > > > Michele > > (unknown) > > > > > > > > > > Hi , > > > > We go to Children's. is on schedule for eye > surgery. Outpt - > > > > strabismus. We see Dr. Greg. I have talked with the family > you > > > > mentioned but never met them. I also checked into the > orthoptist > > > > that several people mentioned on the list. It seems that an > > > > orthoptist is to a pediatric opthomalogist what a > chiropracter is to > > > > a neurosurgeon. Not to say that we won't pursue this also, > it just > > > > seems that they don't work together much. I called for a > referral to > > > > one locally and had a very difficult time finding one. I was > able to > > > > find at least one but it may be difficult to get in and have > it paid > > > > for by insurance. Comes under the category of " vision > therapy " and > > > > may be difficult to fund. It may be worthwhile to go once > or twice, > > > > pay out of pocket, and at least try and learn some of the > exercises. > > > > is doing well otherwise with his implant; learning > to talk > > > > and sign. Using about 50 words spontaneously a day and has > learned > > > > about 400 words/signs in the last few months but it is so > much > > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute > membership > > in > > > the CHARGE Syndrome Foundation. > > > > For information about the CHARGE Syndrome > > > > Foundation or to become a member (and get the newsletter) > > > > please contact marion@c... or visit > > > > the CHARGE Syndrome Foundation web page > > > > at http://www.chargesyndrome.org > > > > 6th International CHARGE Syndrome Conference, Cleveland, > Ohio, > > > > July 25-27, 2003. Information will be available at our > website > > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 , Are you talking about something like early intervention, that is funded by the state, Britt has that and someone comes in like therapy and works with her once a week on her over all development. We can get feeder seats and a we have a corner chair, we love the corner chair--she loves to set in the chair and watch cartoons. I did not know they had toys that you can use too. If it is like early intervention. Thanks for that info. Tina Deskins mom to Cody 2y, Brittney 1y CHARgE, and wife to . > > Aubrie loves Barney most, but also likes many other characters. > She loves > > the computer. It's not her lack of interest holding us back -- > it's my lack > > of drive. I just haven't taken the time to work on with her. We > are > > fortunate to belong to a toy/computer lending program here so > we've got > > several children's programs on loan rather than having to purchase > them. We > > also have an intelli-keys that I planned on working on but didn't > get to. > > > > Now that I'm thinking about it, I should spend some time each day > for the > > next week or so until her IEP meeting. We will be discussing > technology. > > I'd be great if I could prove her skill level by then. > > > > Michele > > (unknown) > > > > > > > > > > Hi , > > > > We go to Children's. is on schedule for eye > surgery. Outpt - > > > > strabismus. We see Dr. Greg. I have talked with the family > you > > > > mentioned but never met them. I also checked into the > orthoptist > > > > that several people mentioned on the list. It seems that an > > > > orthoptist is to a pediatric opthomalogist what a > chiropracter is to > > > > a neurosurgeon. Not to say that we won't pursue this also, > it just > > > > seems that they don't work together much. I called for a > referral to > > > > one locally and had a very difficult time finding one. I was > able to > > > > find at least one but it may be difficult to get in and have > it paid > > > > for by insurance. Comes under the category of " vision > therapy " and > > > > may be difficult to fund. It may be worthwhile to go once > or twice, > > > > pay out of pocket, and at least try and learn some of the > exercises. > > > > is doing well otherwise with his implant; learning > to talk > > > > and sign. Using about 50 words spontaneously a day and has > learned > > > > about 400 words/signs in the last few months but it is so > much > > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute > membership > > in > > > the CHARGE Syndrome Foundation. > > > > For information about the CHARGE Syndrome > > > > Foundation or to become a member (and get the newsletter) > > > > please contact marion@c... or visit > > > > the CHARGE Syndrome Foundation web page > > > > at http://www.chargesyndrome.org > > > > 6th International CHARGE Syndrome Conference, Cleveland, > Ohio, > > > > July 25-27, 2003. Information will be available at our > website > > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 , Are you talking about something like early intervention, that is funded by the state, Britt has that and someone comes in like therapy and works with her once a week on her over all development. We can get feeder seats and a we have a corner chair, we love the corner chair--she loves to set in the chair and watch cartoons. I did not know they had toys that you can use too. If it is like early intervention. Thanks for that info. Tina Deskins mom to Cody 2y, Brittney 1y CHARgE, and wife to . > > Aubrie loves Barney most, but also likes many other characters. > She loves > > the computer. It's not her lack of interest holding us back -- > it's my lack > > of drive. I just haven't taken the time to work on with her. We > are > > fortunate to belong to a toy/computer lending program here so > we've got > > several children's programs on loan rather than having to purchase > them. We > > also have an intelli-keys that I planned on working on but didn't > get to. > > > > Now that I'm thinking about it, I should spend some time each day > for the > > next week or so until her IEP meeting. We will be discussing > technology. > > I'd be great if I could prove her skill level by then. > > > > Michele > > (unknown) > > > > > > > > > > Hi , > > > > We go to Children's. is on schedule for eye > surgery. Outpt - > > > > strabismus. We see Dr. Greg. I have talked with the family > you > > > > mentioned but never met them. I also checked into the > orthoptist > > > > that several people mentioned on the list. It seems that an > > > > orthoptist is to a pediatric opthomalogist what a > chiropracter is to > > > > a neurosurgeon. Not to say that we won't pursue this also, > it just > > > > seems that they don't work together much. I called for a > referral to > > > > one locally and had a very difficult time finding one. I was > able to > > > > find at least one but it may be difficult to get in and have > it paid > > > > for by insurance. Comes under the category of " vision > therapy " and > > > > may be difficult to fund. It may be worthwhile to go once > or twice, > > > > pay out of pocket, and at least try and learn some of the > exercises. > > > > is doing well otherwise with his implant; learning > to talk > > > > and sign. Using about 50 words spontaneously a day and has > learned > > > > about 400 words/signs in the last few months but it is so > much > > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute > membership > > in > > > the CHARGE Syndrome Foundation. > > > > For information about the CHARGE Syndrome > > > > Foundation or to become a member (and get the newsletter) > > > > please contact marion@c... or visit > > > > the CHARGE Syndrome Foundation web page > > > > at http://www.chargesyndrome.org > > > > 6th International CHARGE Syndrome Conference, Cleveland, > Ohio, > > > > July 25-27, 2003. Information will be available at our > website > > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Yes, that is what I'm talking about. They have -- I guess for a lack of a better word -- early intervention equipment to help in getting the child motivated to sit up, crawl, etc. The place we have has some of the things you spoke about. For instance we borrowed a light box until the state paid for one for Jillyan. They have some tumble form equipment to assist with mobility and things like that. They don't necessarily have regular every day " toys " that you get at the department stores,. Everything they have has a purpose in mind. I can say, however, they we have picked up some great toys at Wal-Mart -- the Leap Frog ones. Jillyan loves anything that lights up and makes noise and the Discover Ball is her favorite. We now have removed it from the base and she has to roll around to retrieve it. I know that in NC Assistive Technology (through the state) pays for equipment for special needs kids and when parents are through with that equipment they normally donate it back to the therapist who got it for them, which is what we plan to do with our feeder seat, light box and Benik est -- of course we are not through with all that stuff yet! Jillyan got to try out a Benik vest prior to our getting one to make sure she would tolerate it. The one our PT had was a tiny bit too small for our chubby one so we had to get another custom one made. The first one was purchased for a Downs child with weak muscle tone and he was a little one. Anyway, hope that helps. Ask your therapist about any lending programs they may be aware of or if they have anything in their office that might be of use to you. Jilly's play therapist will leave a toy with us that she enjoys playing with and then we'll give it back for another when she tires of it. Don't hesitate to ask your early intervention people as that is what they are for. Huggins Wife to Robin, Mom to Jillyan (15 months) and Hailey (5) Re: (unknown) , Are you talking about something like early intervention, that is funded by the state, Britt has that and someone comes in like therapy and works with her once a week on her over all development. We can get feeder seats and a we have a corner chair, we love the corner chair--she loves to set in the chair and watch cartoons. I did not know they had toys that you can use too. If it is like early intervention. Thanks for that info. Tina Deskins mom to Cody 2y, Brittney 1y CHARgE, and wife to . > > Aubrie loves Barney most, but also likes many other characters. > She loves > > the computer. It's not her lack of interest holding us back -- > it's my lack > > of drive. I just haven't taken the time to work on with her. We > are > > fortunate to belong to a toy/computer lending program here so > we've got > > several children's programs on loan rather than having to purchase > them. We > > also have an intelli-keys that I planned on working on but didn't > get to. > > > > Now that I'm thinking about it, I should spend some time each day > for the > > next week or so until her IEP meeting. We will be discussing > technology. > > I'd be great if I could prove her skill level by then. > > > > Michele > > (unknown) > > > > > > > > > > Hi , > > > > We go to Children's. is on schedule for eye > surgery. Outpt - > > > > strabismus. We see Dr. Greg. I have talked with the family > you > > > > mentioned but never met them. I also checked into the > orthoptist > > > > that several people mentioned on the list. It seems that an > > > > orthoptist is to a pediatric opthomalogist what a > chiropracter is to > > > > a neurosurgeon. Not to say that we won't pursue this also, > it just > > > > seems that they don't work together much. I called for a > referral to > > > > one locally and had a very difficult time finding one. I was > able to > > > > find at least one but it may be difficult to get in and have > it paid > > > > for by insurance. Comes under the category of " vision > therapy " and > > > > may be difficult to fund. It may be worthwhile to go once > or twice, > > > > pay out of pocket, and at least try and learn some of the > exercises. > > > > is doing well otherwise with his implant; learning > to talk > > > > and sign. Using about 50 words spontaneously a day and has > learned > > > > about 400 words/signs in the last few months but it is so > much > > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute > membership > > in > > > the CHARGE Syndrome Foundation. > > > > For information about the CHARGE Syndrome > > > > Foundation or to become a member (and get the newsletter) > > > > please contact marion@c... or visit > > > > the CHARGE Syndrome Foundation web page > > > > at http://www.chargesyndrome.org > > > > 6th International CHARGE Syndrome Conference, Cleveland, > Ohio, > > > > July 25-27, 2003. Information will be available at our > website > > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Yes, that is what I'm talking about. They have -- I guess for a lack of a better word -- early intervention equipment to help in getting the child motivated to sit up, crawl, etc. The place we have has some of the things you spoke about. For instance we borrowed a light box until the state paid for one for Jillyan. They have some tumble form equipment to assist with mobility and things like that. They don't necessarily have regular every day " toys " that you get at the department stores,. Everything they have has a purpose in mind. I can say, however, they we have picked up some great toys at Wal-Mart -- the Leap Frog ones. Jillyan loves anything that lights up and makes noise and the Discover Ball is her favorite. We now have removed it from the base and she has to roll around to retrieve it. I know that in NC Assistive Technology (through the state) pays for equipment for special needs kids and when parents are through with that equipment they normally donate it back to the therapist who got it for them, which is what we plan to do with our feeder seat, light box and Benik est -- of course we are not through with all that stuff yet! Jillyan got to try out a Benik vest prior to our getting one to make sure she would tolerate it. The one our PT had was a tiny bit too small for our chubby one so we had to get another custom one made. The first one was purchased for a Downs child with weak muscle tone and he was a little one. Anyway, hope that helps. Ask your therapist about any lending programs they may be aware of or if they have anything in their office that might be of use to you. Jilly's play therapist will leave a toy with us that she enjoys playing with and then we'll give it back for another when she tires of it. Don't hesitate to ask your early intervention people as that is what they are for. Huggins Wife to Robin, Mom to Jillyan (15 months) and Hailey (5) Re: (unknown) , Are you talking about something like early intervention, that is funded by the state, Britt has that and someone comes in like therapy and works with her once a week on her over all development. We can get feeder seats and a we have a corner chair, we love the corner chair--she loves to set in the chair and watch cartoons. I did not know they had toys that you can use too. If it is like early intervention. Thanks for that info. Tina Deskins mom to Cody 2y, Brittney 1y CHARgE, and wife to . > > Aubrie loves Barney most, but also likes many other characters. > She loves > > the computer. It's not her lack of interest holding us back -- > it's my lack > > of drive. I just haven't taken the time to work on with her. We > are > > fortunate to belong to a toy/computer lending program here so > we've got > > several children's programs on loan rather than having to purchase > them. We > > also have an intelli-keys that I planned on working on but didn't > get to. > > > > Now that I'm thinking about it, I should spend some time each day > for the > > next week or so until her IEP meeting. We will be discussing > technology. > > I'd be great if I could prove her skill level by then. > > > > Michele > > (unknown) > > > > > > > > > > Hi , > > > > We go to Children's. is on schedule for eye > surgery. Outpt - > > > > strabismus. We see Dr. Greg. I have talked with the family > you > > > > mentioned but never met them. I also checked into the > orthoptist > > > > that several people mentioned on the list. It seems that an > > > > orthoptist is to a pediatric opthomalogist what a > chiropracter is to > > > > a neurosurgeon. Not to say that we won't pursue this also, > it just > > > > seems that they don't work together much. I called for a > referral to > > > > one locally and had a very difficult time finding one. I was > able to > > > > find at least one but it may be difficult to get in and have > it paid > > > > for by insurance. Comes under the category of " vision > therapy " and > > > > may be difficult to fund. It may be worthwhile to go once > or twice, > > > > pay out of pocket, and at least try and learn some of the > exercises. > > > > is doing well otherwise with his implant; learning > to talk > > > > and sign. Using about 50 words spontaneously a day and has > learned > > > > about 400 words/signs in the last few months but it is so > much > > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute > membership > > in > > > the CHARGE Syndrome Foundation. > > > > For information about the CHARGE Syndrome > > > > Foundation or to become a member (and get the newsletter) > > > > please contact marion@c... or visit > > > > the CHARGE Syndrome Foundation web page > > > > at http://www.chargesyndrome.org > > > > 6th International CHARGE Syndrome Conference, Cleveland, > Ohio, > > > > July 25-27, 2003. Information will be available at our > website > > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Yes, that is what I'm talking about. They have -- I guess for a lack of a better word -- early intervention equipment to help in getting the child motivated to sit up, crawl, etc. The place we have has some of the things you spoke about. For instance we borrowed a light box until the state paid for one for Jillyan. They have some tumble form equipment to assist with mobility and things like that. They don't necessarily have regular every day " toys " that you get at the department stores,. Everything they have has a purpose in mind. I can say, however, they we have picked up some great toys at Wal-Mart -- the Leap Frog ones. Jillyan loves anything that lights up and makes noise and the Discover Ball is her favorite. We now have removed it from the base and she has to roll around to retrieve it. I know that in NC Assistive Technology (through the state) pays for equipment for special needs kids and when parents are through with that equipment they normally donate it back to the therapist who got it for them, which is what we plan to do with our feeder seat, light box and Benik est -- of course we are not through with all that stuff yet! Jillyan got to try out a Benik vest prior to our getting one to make sure she would tolerate it. The one our PT had was a tiny bit too small for our chubby one so we had to get another custom one made. The first one was purchased for a Downs child with weak muscle tone and he was a little one. Anyway, hope that helps. Ask your therapist about any lending programs they may be aware of or if they have anything in their office that might be of use to you. Jilly's play therapist will leave a toy with us that she enjoys playing with and then we'll give it back for another when she tires of it. Don't hesitate to ask your early intervention people as that is what they are for. Huggins Wife to Robin, Mom to Jillyan (15 months) and Hailey (5) Re: (unknown) , Are you talking about something like early intervention, that is funded by the state, Britt has that and someone comes in like therapy and works with her once a week on her over all development. We can get feeder seats and a we have a corner chair, we love the corner chair--she loves to set in the chair and watch cartoons. I did not know they had toys that you can use too. If it is like early intervention. Thanks for that info. Tina Deskins mom to Cody 2y, Brittney 1y CHARgE, and wife to . > > Aubrie loves Barney most, but also likes many other characters. > She loves > > the computer. It's not her lack of interest holding us back -- > it's my lack > > of drive. I just haven't taken the time to work on with her. We > are > > fortunate to belong to a toy/computer lending program here so > we've got > > several children's programs on loan rather than having to purchase > them. We > > also have an intelli-keys that I planned on working on but didn't > get to. > > > > Now that I'm thinking about it, I should spend some time each day > for the > > next week or so until her IEP meeting. We will be discussing > technology. > > I'd be great if I could prove her skill level by then. > > > > Michele > > (unknown) > > > > > > > > > > Hi , > > > > We go to Children's. is on schedule for eye > surgery. Outpt - > > > > strabismus. We see Dr. Greg. I have talked with the family > you > > > > mentioned but never met them. I also checked into the > orthoptist > > > > that several people mentioned on the list. It seems that an > > > > orthoptist is to a pediatric opthomalogist what a > chiropracter is to > > > > a neurosurgeon. Not to say that we won't pursue this also, > it just > > > > seems that they don't work together much. I called for a > referral to > > > > one locally and had a very difficult time finding one. I was > able to > > > > find at least one but it may be difficult to get in and have > it paid > > > > for by insurance. Comes under the category of " vision > therapy " and > > > > may be difficult to fund. It may be worthwhile to go once > or twice, > > > > pay out of pocket, and at least try and learn some of the > exercises. > > > > is doing well otherwise with his implant; learning > to talk > > > > and sign. Using about 50 words spontaneously a day and has > learned > > > > about 400 words/signs in the last few months but it is so > much > > > > work!!! Thanks for asking..hope your doing well. Rose > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute > membership > > in > > > the CHARGE Syndrome Foundation. > > > > For information about the CHARGE Syndrome > > > > Foundation or to become a member (and get the newsletter) > > > > please contact marion@c... or visit > > > > the CHARGE Syndrome Foundation web page > > > > at http://www.chargesyndrome.org > > > > 6th International CHARGE Syndrome Conference, Cleveland, > Ohio, > > > > July 25-27, 2003. Information will be available at our > website > > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , Are you in Irredell County? I live in Winston-Salem. E-mail me privately. I'd love to chat about things. Do you come to Baptist for your health care. My husband works in Pediactrics at Baptist. Our e-mail is jddungetheim749@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , Are you in Irredell County? I live in Winston-Salem. E-mail me privately. I'd love to chat about things. Do you come to Baptist for your health care. My husband works in Pediactrics at Baptist. Our e-mail is jddungetheim749@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , Are you in Irredell County? I live in Winston-Salem. E-mail me privately. I'd love to chat about things. Do you come to Baptist for your health care. My husband works in Pediactrics at Baptist. Our e-mail is jddungetheim749@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 Bren, First off.... ..........YUMMMMMMMY. At least you have GREAT taste in cheats. *big silly grin* Second, GOOD JOB not hiding and for asking for help. That is a great step in the right direction. It's so easy to just fade away but then without support and accountability you just get discouraged and do worse. You know....the " tomorrow " plan where every day you say " one more day of being bad and then TOMORROW I'll start over. " So I applaud you. You're among friends who've been in your shoes bunches of times. Kick your cute little butt and behave tomorrow K? Be good to yourself some other way. Think bubble bath and glass of wine or something. Just stop the insanity. And congratulate yourself for doing the right thing today and asking for help and accountability. I'll need the same boot in the butt sometime in the future, so you may save this post and send it back to me then. Warmly, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 I know what you mean Di, I hate exercise too. I like water and I drink it but my gosh, I dont like to drink as much as everyone says we should, so i just try to drink as much as i can. i just dont like to have a stomach full of water, it makes it hurt and makes me go pee too much! lol I dont like to have to go to the bathroom all day. lol Tina (unknown) Hi everybody~ Thank you for the warm welcome! Well It's been six days and I've lost seven pounds (probably water) but it's a start. I still hate exercise, but I WILL keep doing it....the water thing is going to be difficult. I'm not sure which I dislike more, water or exercise....lol..why is the bad things in life are whats good for you and the things that " I " consider good are bad.....life is very confusing.....oh well...good luck to everyone this week. Oh ya, one question. How do you weigh in? Do we post it somewhere or is it just for ourselves?? talk to ya soon....di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 Hi di, > Thank you for the warm welcome! Well It's been six days and I've lost > seven pounds (probably water) but it's a start. I still hate > exercise, but I WILL keep doing it....the water thing is going to be > difficult. I'm not sure which I dislike more, water or > exercise....lol.. I don't do the water thing. I just don't. I drink when I am thirsty. But I do exercise. I also drink plenty of water when I exercise-- because I get thirsty. I'm a big exercise advocate. Lucia -- lucia@... Lisle, Illinois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 , Good for you! Great work! keep it up. It is paying off. Gena :-) On Wednesday, November 20, 2002, at 01:15 PM, jennifer wrote: > went to the gym today, and had a great workout. upped the weights on > the leg machine, and have been so excited that my shoulders, back, > arms, and legs are so muscular and hard. my abs are yet the only > thing i'm still working, and the only thing i really really want to > lose, it's getting better though. i will do some walking tomorrow. > and maybe some video. got to go back to work. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2002 Report Share Posted November 28, 2002 Ang, I have had the same thing happening. People swear it looks like I lost more weight, even my chiropractor. He says it is redistributing, shifting things. It is something that naturally happens after losing weight and exercise helps. The plateau is your body adjusting to it's new composition. It isn't a bad thing! Just keep doing what you are, maybe try shaking up your exercise a bit. You have done so great! 60 pounds is a huge amount! That is when I hit my first slow down. Just don't start slacking like I did. We can do this! How much more do you want to lose? I think atleast 30 more, maybe 40. Eventually 50 but I think that will have to wait until I have the tummy tuck. I'm figuring atleast 2 years. Gena > Ok - now I've been dieting for years and pretty much know what's > going on. But I've gotten to a point in which I am truely baffled as > to why and what is happening. > For 18 months I lost consistantly - a total of almost 60 pounds. Now > for the last month (closer to 2 months) the wieght is staying the > same (the longest platue yet).  That - I am not so worried about or > baffled over. > Here's the thing I'd like to get everyones ideas and thoughts on... > During this stable time, my body is changing. My measurements are > getting all out of wack. In a good way for the most part...but it's > as if the fat is no longer moving off - but instead re-distributing > evenly. Does that make sence? > Does anyone know what is happening or why? In all the years I've > dieted I've never stuck to it this long or lost this much. So this > could be a normal thing I'm not aware of. > Thanks, > Ang > > <image.tiff> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Oh Crys, you are so so nice!! Much nicer than I am !! LOL!! Semalee For unto us this day a child is born..... -- Re: (unknown) In a message dated 1/4/2003 1:49:13 PM Eastern Standard Time, SteigGirl2@... writes: > Oh, this is a GREAT idea!! I have got to do it, just get a laugh!! > Another idea is to buy him his own bottle and fill it when you fill yours. Make it a cool one - maybe with is favorite sports team or whatever. Be sure you keep his filled. After a while, he'll be as posessive as you are <g>. -Crys- (Lifetimer since August 1995) WW to date: 178.6/ 140.2 / 140 (-38.4) Weight in 2003: 139.6 / 140.2 / 130 (+0.6) Well, the day has just begun and I'm already running late. With too many Irons in the fire and too much on my plate. I'd be pulling out my hair if I could just get one had free, And I'd stop the world if I could find the key! What I see is telling me the worlds gone crazy. But what is real says God's still on his throne. What I need is to remember one thing: That the Lord of the gentle breeze is Lord of the rough and tumble. And He is the King of the jungle! - Curtis Chapman- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Isn't that a wonderful feeling, Bev? This year was the first year in forever that I have not made the New Year's Resolution to lose weight! It feels great to BE healthy instead of thinking I should do something to GET healthy. (unknown) I've been home since Thursday, my 9 yr. old is sick, and we got iced- in on Friday. can you say BORED???? I had my WI today. I lost 1.4 BUT, I have had some free time on my hands & I usually try to take some time out to actually think. LOL Im really enjoying the WW program. I've been on it since Oct 22 2002, and sometimes I think the best thing about WW is being able to think to myself " Im doing this for me, its working, Im not stressed, and Im finally starting to feel good about ME " I used to see the " diet " commercials, or exercise commercials on TV and just watch and think " gee, I wish I could get motivated and do something about this weight " and then go in the kitchen & make a snack, LOL. Now when I see them, I get to think, " hey Im already doing something, and its really working! " Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 In a message dated 2/4/2003 5:58:34 PM Pacific Standard Time, bevsuebb@... writes: > I had my WI today. I lost 1.4 Congrats Bev )!!!!!!!! Gymmie in Cali )!!!!!!!!! " One day at a time, no guilt and move on " Dotti Today is " Monday " Breaking Free in 2K3 Week of 2/2 Goals Wednesday Abs Challenge 128 oz. Water Weights 241.6/155.5/140 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2003 Report Share Posted February 6, 2003 > Isn't that a wonderful feeling, Bev? This year was the first year in > forever that I have not made the New Year's Resolution to lose weight! > It feels great to BE healthy instead of thinking I should do something > to GET healthy. > YEP, Tory, its fantastic!! Have you been able to get more in with your workouts? Everyone at my work has been asking about you Even those not on WW! We all find your website so inspiring. Its really nice to find such uplifting stuff on the net. Bev Quote Link to comment Share on other sites More sharing options...
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