Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Happy Birthday to Timmy!!!!!! -- from Aubrie and Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 thanks for the wishes--he had a good day, got haircut and ears checked today, all good----except his behavior!!!! guess he used up all the good behavior at camp grammy and bop and now the devilish side has taken over. he won't even be good for grammy and bop here. oh well, my friend warned me this was coming!! have a good one--how is aubrie doing? did you start school yet? maria Re: Timmy's Birthday > > Happy Birthday to Timmy!!!!!! -- > > from Aubrie and Michele > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 - Thanks for asking about Aubrie. She's doing great! I am so pleasantly surprised. The cast isn't too big of a deal at all. She is comfortable, happy, etc. Potty-ing is going well. No messes or problems with that. She gets frustrated when she can't do things easily because of her position -- like when the stamp pad fell on the floor today and she couldn't get it herself. But I can certainly understand that little bit of frustration. If it were me, I'd be frustrated much more often. The one thing I hadn't prepared for was getting a handicapped parking tag. I didn't consider it much cuz I thought we'd be confined by hot weather and the difficulty of transporting. But it's been wonderfully cool and she's fairly easy to get around. I wouldn't want to do it long term, but it's ok for 5-6 weeks. I'm gaining a whole new understanding and compassion for folks who have to use a wheelchair all the time. I finally am getting a tag tomorrow. I have to double park in order to have room to get her in and out. If I park in one spot, I can't get her out with someone next to me. We've been to the movie theatre, the outdoor Muni theatre, shopping, and on walks around town. Much of it hasn't been easy, but it's been much more do-able than I anticipated. School starts next Wed. I have a message in to the principal, but I need to be sure to get a hold of him and her teacher tomorrow. It'll be here before I know it. Glad the birthday was a success -- but I wish you weren't having to deal with the behavior stuff. Hugs to you -- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 - Thanks for asking about Aubrie. She's doing great! I am so pleasantly surprised. The cast isn't too big of a deal at all. She is comfortable, happy, etc. Potty-ing is going well. No messes or problems with that. She gets frustrated when she can't do things easily because of her position -- like when the stamp pad fell on the floor today and she couldn't get it herself. But I can certainly understand that little bit of frustration. If it were me, I'd be frustrated much more often. The one thing I hadn't prepared for was getting a handicapped parking tag. I didn't consider it much cuz I thought we'd be confined by hot weather and the difficulty of transporting. But it's been wonderfully cool and she's fairly easy to get around. I wouldn't want to do it long term, but it's ok for 5-6 weeks. I'm gaining a whole new understanding and compassion for folks who have to use a wheelchair all the time. I finally am getting a tag tomorrow. I have to double park in order to have room to get her in and out. If I park in one spot, I can't get her out with someone next to me. We've been to the movie theatre, the outdoor Muni theatre, shopping, and on walks around town. Much of it hasn't been easy, but it's been much more do-able than I anticipated. School starts next Wed. I have a message in to the principal, but I need to be sure to get a hold of him and her teacher tomorrow. It'll be here before I know it. Glad the birthday was a success -- but I wish you weren't having to deal with the behavior stuff. Hugs to you -- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 - Thanks for asking about Aubrie. She's doing great! I am so pleasantly surprised. The cast isn't too big of a deal at all. She is comfortable, happy, etc. Potty-ing is going well. No messes or problems with that. She gets frustrated when she can't do things easily because of her position -- like when the stamp pad fell on the floor today and she couldn't get it herself. But I can certainly understand that little bit of frustration. If it were me, I'd be frustrated much more often. The one thing I hadn't prepared for was getting a handicapped parking tag. I didn't consider it much cuz I thought we'd be confined by hot weather and the difficulty of transporting. But it's been wonderfully cool and she's fairly easy to get around. I wouldn't want to do it long term, but it's ok for 5-6 weeks. I'm gaining a whole new understanding and compassion for folks who have to use a wheelchair all the time. I finally am getting a tag tomorrow. I have to double park in order to have room to get her in and out. If I park in one spot, I can't get her out with someone next to me. We've been to the movie theatre, the outdoor Muni theatre, shopping, and on walks around town. Much of it hasn't been easy, but it's been much more do-able than I anticipated. School starts next Wed. I have a message in to the principal, but I need to be sure to get a hold of him and her teacher tomorrow. It'll be here before I know it. Glad the birthday was a success -- but I wish you weren't having to deal with the behavior stuff. Hugs to you -- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 , a was released this past friday. They are changing her meds. Especially for her to safely have children! Can you believe I said that? Anyway, we learned stress is her biggest issue so she has to work on letting the little things go. She is a perfectionist so that will be hard for her. She is also incredibly moralistic so again, she just has to accept the fact others arent. I satrt my job on the 31st. Actually that isn't true. I go for training on the 23rd. I am terribly excited. I don't know what I can and cna not say bout the child I will be with except to say my life and direction has lead me to him. I am so thrilled! Patty is doing well. She had gained a little weight being so sedate around here. Plus she eats breads, pasta... She is now back to being healthy. It affects her moods as well. She has been taking tests on vocational abilities and it comes out she does well with computer technology. That is going to be her direction in life. Theis doesn't surprise me but is painful to my heart that that is exactly what we continully forught for in her education and lost. They (the special ed staff) didn't feel she had that abilitiy and that is where she excells. I try not to hold on to the past but it's hard. Patty is also recievieng orientation and mobility. The man is astounded at her skills and feels Perkins was fabulous for her. Well, no kidding! I kind of get tired of feeling, I told you so. I was having a conversation with a man whose child is at Perkins and now know why I love them so. It is only Perkins who treated Pattya s an individual first and not a disability. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 , a was released this past friday. They are changing her meds. Especially for her to safely have children! Can you believe I said that? Anyway, we learned stress is her biggest issue so she has to work on letting the little things go. She is a perfectionist so that will be hard for her. She is also incredibly moralistic so again, she just has to accept the fact others arent. I satrt my job on the 31st. Actually that isn't true. I go for training on the 23rd. I am terribly excited. I don't know what I can and cna not say bout the child I will be with except to say my life and direction has lead me to him. I am so thrilled! Patty is doing well. She had gained a little weight being so sedate around here. Plus she eats breads, pasta... She is now back to being healthy. It affects her moods as well. She has been taking tests on vocational abilities and it comes out she does well with computer technology. That is going to be her direction in life. Theis doesn't surprise me but is painful to my heart that that is exactly what we continully forught for in her education and lost. They (the special ed staff) didn't feel she had that abilitiy and that is where she excells. I try not to hold on to the past but it's hard. Patty is also recievieng orientation and mobility. The man is astounded at her skills and feels Perkins was fabulous for her. Well, no kidding! I kind of get tired of feeling, I told you so. I was having a conversation with a man whose child is at Perkins and now know why I love them so. It is only Perkins who treated Pattya s an individual first and not a disability. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 , a was released this past friday. They are changing her meds. Especially for her to safely have children! Can you believe I said that? Anyway, we learned stress is her biggest issue so she has to work on letting the little things go. She is a perfectionist so that will be hard for her. She is also incredibly moralistic so again, she just has to accept the fact others arent. I satrt my job on the 31st. Actually that isn't true. I go for training on the 23rd. I am terribly excited. I don't know what I can and cna not say bout the child I will be with except to say my life and direction has lead me to him. I am so thrilled! Patty is doing well. She had gained a little weight being so sedate around here. Plus she eats breads, pasta... She is now back to being healthy. It affects her moods as well. She has been taking tests on vocational abilities and it comes out she does well with computer technology. That is going to be her direction in life. Theis doesn't surprise me but is painful to my heart that that is exactly what we continully forught for in her education and lost. They (the special ed staff) didn't feel she had that abilitiy and that is where she excells. I try not to hold on to the past but it's hard. Patty is also recievieng orientation and mobility. The man is astounded at her skills and feels Perkins was fabulous for her. Well, no kidding! I kind of get tired of feeling, I told you so. I was having a conversation with a man whose child is at Perkins and now know why I love them so. It is only Perkins who treated Pattya s an individual first and not a disability. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Bonnie- I missed the original post about a's hospitalization. What happened? I'm glad to know that she's home and improving. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Bonnie- I missed the original post about a's hospitalization. What happened? I'm glad to know that she's home and improving. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Bonnie- I missed the original post about a's hospitalization. What happened? I'm glad to know that she's home and improving. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 She has a seizure disorder and was changing meds. She thought she had grown out of them too so she wasn't taking her meds as prescribed. Kris had a seizure. Not a grand mal but a good one. She's fine now. Still changing her meds but she is controlled and feeling better. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Bonnie- I'm relieved to know it's something that has been ongoing and not something new for your family to deal with. I hope she gets those meds all straightened out very soon. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 glad all is going well--we are coping with a lot of things--new orthotics, being bored, etc....are doing hershey park next week 2 days and camping next week-end, I have to get fingerprinted so I can sub and get tb test....plus getting pto stuff going. will be an interesting month--september--soccer will start and tim wants to swim at the y....the list goes on and on----this too shall pass, right?!?!? maria Re: Timmy's Birthday > - > Thanks for asking about Aubrie. She's doing great! I am so pleasantly > surprised. The cast isn't too big of a deal at all. She is > comfortable, happy, etc. Potty-ing is going well. No messes or > problems with that. She gets frustrated when she can't do things easily > because of her position -- like when the stamp pad fell on the floor > today and she couldn't get it herself. But I can certainly understand > that little bit of frustration. If it were me, I'd be frustrated much > more often. > > The one thing I hadn't prepared for was getting a handicapped parking > tag. I didn't consider it much cuz I thought we'd be confined by hot > weather and the difficulty of transporting. But it's been wonderfully > cool and she's fairly easy to get around. I wouldn't want to do it long > term, but it's ok for 5-6 weeks. I'm gaining a whole new understanding > and compassion for folks who have to use a wheelchair all the time. I > finally am getting a tag tomorrow. I have to double park in order to > have room to get her in and out. If I park in one spot, I can't get her > out with someone next to me. > > We've been to the movie theatre, the outdoor Muni theatre, shopping, and > on walks around town. Much of it hasn't been easy, but it's been much > more do-able than I anticipated. > > School starts next Wed. I have a message in to the principal, but I > need to be sure to get a hold of him and her teacher tomorrow. It'll be > here before I know it. > > Glad the birthday was a success -- but I wish you weren't having to deal > with the behavior stuff. Hugs to you -- > > Michele W > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 glad all is going well--we are coping with a lot of things--new orthotics, being bored, etc....are doing hershey park next week 2 days and camping next week-end, I have to get fingerprinted so I can sub and get tb test....plus getting pto stuff going. will be an interesting month--september--soccer will start and tim wants to swim at the y....the list goes on and on----this too shall pass, right?!?!? maria Re: Timmy's Birthday > - > Thanks for asking about Aubrie. She's doing great! I am so pleasantly > surprised. The cast isn't too big of a deal at all. She is > comfortable, happy, etc. Potty-ing is going well. No messes or > problems with that. She gets frustrated when she can't do things easily > because of her position -- like when the stamp pad fell on the floor > today and she couldn't get it herself. But I can certainly understand > that little bit of frustration. If it were me, I'd be frustrated much > more often. > > The one thing I hadn't prepared for was getting a handicapped parking > tag. I didn't consider it much cuz I thought we'd be confined by hot > weather and the difficulty of transporting. But it's been wonderfully > cool and she's fairly easy to get around. I wouldn't want to do it long > term, but it's ok for 5-6 weeks. I'm gaining a whole new understanding > and compassion for folks who have to use a wheelchair all the time. I > finally am getting a tag tomorrow. I have to double park in order to > have room to get her in and out. If I park in one spot, I can't get her > out with someone next to me. > > We've been to the movie theatre, the outdoor Muni theatre, shopping, and > on walks around town. Much of it hasn't been easy, but it's been much > more do-able than I anticipated. > > School starts next Wed. I have a message in to the principal, but I > need to be sure to get a hold of him and her teacher tomorrow. It'll be > here before I know it. > > Glad the birthday was a success -- but I wish you weren't having to deal > with the behavior stuff. Hugs to you -- > > Michele W > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 good luck with work, hope school goes well for kristina and patty finds what makes her happy and content. hugs to all maria and the " bored " guys Re: Timmy's Birthday > > , > > a was released this past friday. They are changing her meds. > Especially for her to safely have children! Can you believe I said that? Anyway, we > learned stress is her biggest issue so she has to work on letting the little > things go. She is a perfectionist so that will be hard for her. She is also > incredibly moralistic so again, she just has to accept the fact others arent. > > I satrt my job on the 31st. Actually that isn't true. I go for training on > the 23rd. I am terribly excited. I don't know what I can and cna not say > bout the child I will be with except to say my life and direction has lead me to > him. I am so thrilled! > > Patty is doing well. She had gained a little weight being so sedate around > here. Plus she eats breads, pasta... She is now back to being healthy. It > affects her moods as well. She has been taking tests on vocational abilities and > it comes out she does well with computer technology. That is going to be > her direction in life. Theis doesn't surprise me but is painful to my heart > that that is exactly what we continully forught for in her education and lost. > They (the special ed staff) didn't feel she had that abilitiy and that is where > she excells. I try not to hold on to the past but it's hard. > > Patty is also recievieng orientation and mobility. The man is astounded at > her skills and feels Perkins was fabulous for her. Well, no kidding! I kind > of get tired of feeling, I told you so. > > I was having a conversation with a man whose child is at Perkins and now know > why I love them so. It is only Perkins who treated Pattya s an individual > first and not a disability. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 good luck with work, hope school goes well for kristina and patty finds what makes her happy and content. hugs to all maria and the " bored " guys Re: Timmy's Birthday > > , > > a was released this past friday. They are changing her meds. > Especially for her to safely have children! Can you believe I said that? Anyway, we > learned stress is her biggest issue so she has to work on letting the little > things go. She is a perfectionist so that will be hard for her. She is also > incredibly moralistic so again, she just has to accept the fact others arent. > > I satrt my job on the 31st. Actually that isn't true. I go for training on > the 23rd. I am terribly excited. I don't know what I can and cna not say > bout the child I will be with except to say my life and direction has lead me to > him. I am so thrilled! > > Patty is doing well. She had gained a little weight being so sedate around > here. Plus she eats breads, pasta... She is now back to being healthy. It > affects her moods as well. She has been taking tests on vocational abilities and > it comes out she does well with computer technology. That is going to be > her direction in life. Theis doesn't surprise me but is painful to my heart > that that is exactly what we continully forught for in her education and lost. > They (the special ed staff) didn't feel she had that abilitiy and that is where > she excells. I try not to hold on to the past but it's hard. > > Patty is also recievieng orientation and mobility. The man is astounded at > her skills and feels Perkins was fabulous for her. Well, no kidding! I kind > of get tired of feeling, I told you so. > > I was having a conversation with a man whose child is at Perkins and now know > why I love them so. It is only Perkins who treated Pattya s an individual > first and not a disability. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 good luck with work, hope school goes well for kristina and patty finds what makes her happy and content. hugs to all maria and the " bored " guys Re: Timmy's Birthday > > , > > a was released this past friday. They are changing her meds. > Especially for her to safely have children! Can you believe I said that? Anyway, we > learned stress is her biggest issue so she has to work on letting the little > things go. She is a perfectionist so that will be hard for her. She is also > incredibly moralistic so again, she just has to accept the fact others arent. > > I satrt my job on the 31st. Actually that isn't true. I go for training on > the 23rd. I am terribly excited. I don't know what I can and cna not say > bout the child I will be with except to say my life and direction has lead me to > him. I am so thrilled! > > Patty is doing well. She had gained a little weight being so sedate around > here. Plus she eats breads, pasta... She is now back to being healthy. It > affects her moods as well. She has been taking tests on vocational abilities and > it comes out she does well with computer technology. That is going to be > her direction in life. Theis doesn't surprise me but is painful to my heart > that that is exactly what we continully forught for in her education and lost. > They (the special ed staff) didn't feel she had that abilitiy and that is where > she excells. I try not to hold on to the past but it's hard. > > Patty is also recievieng orientation and mobility. The man is astounded at > her skills and feels Perkins was fabulous for her. Well, no kidding! I kind > of get tired of feeling, I told you so. > > I was having a conversation with a man whose child is at Perkins and now know > why I love them so. It is only Perkins who treated Pattya s an individual > first and not a disability. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Hello, everybody in the list. I have now , in my home, a desperate mother w/ her 2-week old daughter. She came seeking for help, bc she was told her daughter could have the same `problem` as my son Bernardo. Things do not work so fast for disadvantaged people here in Brazil, and according to all the papers she brought, the blood test for genetics will be due oly on Dept. 13, a´nd I´m sure they´ll have to wait for acouple of weeks to get the result, However, there´s indication of two possible syndromes: either syndrome or syndrome Rubinstein-Taybi. Can anyonyone help me find info. about these syndromes? Thanks a lot. Fátima - mother of Pedro (21), Bernardo (19) CHARGER) and o (15) --------------------------------- Yahoo! Acesso Grátis - navegue de graça com conexão de qualidade! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Hello, everybody in the list. I have now , in my home, a desperate mother w/ her 2-week old daughter. She came seeking for help, bc she was told her daughter could have the same `problem` as my son Bernardo. Things do not work so fast for disadvantaged people here in Brazil, and according to all the papers she brought, the blood test for genetics will be due oly on Dept. 13, a´nd I´m sure they´ll have to wait for acouple of weeks to get the result, However, there´s indication of two possible syndromes: either syndrome or syndrome Rubinstein-Taybi. Can anyonyone help me find info. about these syndromes? Thanks a lot. Fátima - mother of Pedro (21), Bernardo (19) CHARGER) and o (15) --------------------------------- Yahoo! Acesso Grátis - navegue de graça com conexão de qualidade! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Hello, everybody in the list. I have now , in my home, a desperate mother w/ her 2-week old daughter. She came seeking for help, bc she was told her daughter could have the same `problem` as my son Bernardo. Things do not work so fast for disadvantaged people here in Brazil, and according to all the papers she brought, the blood test for genetics will be due oly on Dept. 13, a´nd I´m sure they´ll have to wait for acouple of weeks to get the result, However, there´s indication of two possible syndromes: either syndrome or syndrome Rubinstein-Taybi. Can anyonyone help me find info. about these syndromes? Thanks a lot. Fátima - mother of Pedro (21), Bernardo (19) CHARGER) and o (15) --------------------------------- Yahoo! Acesso Grátis - navegue de graça com conexão de qualidade! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Fatima - Do you have internet to search those syndromes?? If not, we can search for you and paste the info we find into an email message to send to you. How fortunate for that other mom to have found you. I hope that she is able to find the medical support she needs. How is the baby doing medically? Is he ok, healthwise, or are the immediate needs that are not being met down there? Michele W mom to Aubrie (6 yrs) CHaRgE and (12 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Fatima, go to " search " on your computer and then go to Google.com. When that comes up, type in the names of those two syndromes and you should get many references for them. Also, there are several genetics links (National Organization for Rare Disorders might be the biggest one) and you can get almost any syndrome named. Both of those syndromes are well documented and there are links, family connections, etc. Good luck. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Fatima, go to " search " on your computer and then go to Google.com. When that comes up, type in the names of those two syndromes and you should get many references for them. Also, there are several genetics links (National Organization for Rare Disorders might be the biggest one) and you can get almost any syndrome named. Both of those syndromes are well documented and there are links, family connections, etc. Good luck. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Fatima, go to " search " on your computer and then go to Google.com. When that comes up, type in the names of those two syndromes and you should get many references for them. Also, there are several genetics links (National Organization for Rare Disorders might be the biggest one) and you can get almost any syndrome named. Both of those syndromes are well documented and there are links, family connections, etc. Good luck. pam Quote Link to comment Share on other sites More sharing options...
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