Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 luckily, we don't have the high palate to deal with--I don't think---I may be wrong...but this is not going to be fun. although, we did talk with him last night and told him how important it is for him to cooperate---we don't need more problems down the line because of front teeth going back. his top teeth go behind bottom. keegan will need for bottom most likely--underbite....we'll see about liam. I've just been fingerprinted to the consignment store 00found more jeans for tim, wide legs to accomidate braces and adjustable waists, lunch, and to the dr for tb test, and glad to be home. it's so much with all 3 of them, I forget not having to do it very often with all of them. and they are at the end of their ropes dealing with each other too. although threatening naps works well now. pat wants ot go look at campers tonight--we have a pop up, but want a box trailer, I think we would use it more. anyone do boy/cub scouts? thinking about it for both boys--but pat would be in charge this time have a good one, I'm going to do laundry--does it ever end? Re: FM update plus > - > The 40 thing hit me hard too. Took me several months to adjust, but I'm > fine with it now. Now it feels like just a number -- can't believe I'll > be 41 in Oct. It's one thing to /be/ 40 and another to be/ over /40 > :-) I hope your dates are as wonderful as you anticipate. DJ > and I need something really fun like that. We've been able to get away > for dinner here and there (less and less lately) but we never doing > anything really special. > > Aubrie wants to swim too. I am thinking that I may sign her up this > winter. I'm not anxious to add anything to our schedule (I'm learning > to say " no " ) especially cuz the YMCA is in the next town 40 min away. > But she's really really wanting to learn so it seems like lessons > before the summer season and then again in the summer would be good for > her. Too bad hates swimming now -- after years of being on the > swim team and doing really well -- says he hates it now cuz we made him > swim for those years -- I can just see him on Oprah " Parents who ruin > their kids fun by turning it into work " . > > Once everyone gets into the school schedule, things will feel better for > you. Scheduled and routine busy is better than random crazy busy. > > Good luck with the dental issues. The dentist yesterday pointed out > that Aubrie will likely need a palate expansion but now we'll have to > wait til it's ok as far as her palate repair. I hadn't thought about > the dentist and plastic surgeon needing to be coordinated. Since the > palate repair was critical for speech, there would have been no delaying > it, but I hope it doesn't lead to orthodontic issues being complicated. > > 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 September 1, 2004 Report Share Posted September 1, 2004 luckily, we don't have the high palate to deal with--I don't think---I may be wrong...but this is not going to be fun. although, we did talk with him last night and told him how important it is for him to cooperate---we don't need more problems down the line because of front teeth going back. his top teeth go behind bottom. keegan will need for bottom most likely--underbite....we'll see about liam. I've just been fingerprinted to the consignment store 00found more jeans for tim, wide legs to accomidate braces and adjustable waists, lunch, and to the dr for tb test, and glad to be home. it's so much with all 3 of them, I forget not having to do it very often with all of them. and they are at the end of their ropes dealing with each other too. although threatening naps works well now. pat wants ot go look at campers tonight--we have a pop up, but want a box trailer, I think we would use it more. anyone do boy/cub scouts? thinking about it for both boys--but pat would be in charge this time have a good one, I'm going to do laundry--does it ever end? Re: FM update plus > - > The 40 thing hit me hard too. Took me several months to adjust, but I'm > fine with it now. Now it feels like just a number -- can't believe I'll > be 41 in Oct. It's one thing to /be/ 40 and another to be/ over /40 > :-) I hope your dates are as wonderful as you anticipate. DJ > and I need something really fun like that. We've been able to get away > for dinner here and there (less and less lately) but we never doing > anything really special. > > Aubrie wants to swim too. I am thinking that I may sign her up this > winter. I'm not anxious to add anything to our schedule (I'm learning > to say " no " ) especially cuz the YMCA is in the next town 40 min away. > But she's really really wanting to learn so it seems like lessons > before the summer season and then again in the summer would be good for > her. Too bad hates swimming now -- after years of being on the > swim team and doing really well -- says he hates it now cuz we made him > swim for those years -- I can just see him on Oprah " Parents who ruin > their kids fun by turning it into work " . > > Once everyone gets into the school schedule, things will feel better for > you. Scheduled and routine busy is better than random crazy busy. > > Good luck with the dental issues. The dentist yesterday pointed out > that Aubrie will likely need a palate expansion but now we'll have to > wait til it's ok as far as her palate repair. I hadn't thought about > the dentist and plastic surgeon needing to be coordinated. Since the > palate repair was critical for speech, there would have been no delaying > it, but I hope it doesn't lead to orthodontic issues being complicated. > > 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 September 1, 2004 Report Share Posted September 1, 2004 wrote: > > anyone do boy/cub scouts? thinking about it for both boys--but pat > would be > in charge this time > Sounds like a winner to me! And eventually all 3 would be involved and mom would have some " lady " time!!!! Yippee! Now-- when that time comes, don't fill it with other obligations. Take some well-deserved quiet time. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 wrote: > > anyone do boy/cub scouts? thinking about it for both boys--but pat > would be > in charge this time > Sounds like a winner to me! And eventually all 3 would be involved and mom would have some " lady " time!!!! Yippee! Now-- when that time comes, don't fill it with other obligations. Take some well-deserved quiet time. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 I am going to take me time in october--scrapbooking 2 nights 2 days--ahhhhhhhh it will be wonderful!! maria Re: FM update plus > > wrote: > > > > > anyone do boy/cub scouts? thinking about it for both boys--but pat > > would be > > in charge this time > > > Sounds like a winner to me! And eventually all 3 would be involved and > mom would have some " lady " time!!!! Yippee! Now-- when that time > comes, don't fill it with other obligations. Take some well-deserved > quiet time. > > Michele W > Aubrie's mom > > > > > 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 September 1, 2004 Report Share Posted September 1, 2004 I am going to take me time in october--scrapbooking 2 nights 2 days--ahhhhhhhh it will be wonderful!! maria Re: FM update plus > > wrote: > > > > > anyone do boy/cub scouts? thinking about it for both boys--but pat > > would be > > in charge this time > > > Sounds like a winner to me! And eventually all 3 would be involved and > mom would have some " lady " time!!!! Yippee! Now-- when that time > comes, don't fill it with other obligations. Take some well-deserved > quiet time. > > Michele W > Aubrie's mom > > > > > 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 September 1, 2004 Report Share Posted September 1, 2004 , We were having a difficult time in getting the school to allow to use the school FM outside of school time. At the time, the attorney we had let the school know that the FM system wasn't any different from a school book that kids bring home. It is a tool that is used for learning and learning doesn't stop at the end of the school day. Therefore, was able to get the FM system used outside of school. It was sent home with her just like a math book would have been had she been in regular ed. We didn't use the school one for long. We were able to get one apporved by T-19 so we had ownership of the FM and as she changed schools, we didn't have to go through the battle with every school change. Just something to think about the next time the subject comes up in a meeting. Sheryl Mom to Mitch 18 & 17 CHARGE > Michele, > We are in the midst of getting all the " stuff " , " people " , " teams " ready for back to school too and I can totally empathize with you on feeling out of sorts. I am so HAPPY about that FM system, I would really like to have one outside of school for Kennedy as well for dance class, at home, etc. I'll have to look into it. I'm glad everything is working out and hopefully you'll have some " normal " time soon. > Hugs, > > > > > , > Mom to Kennedy 6 yr old with CHARGE, 15, 13, and wife to Graeme > New Brunswick, CANADA > Visit the Weir family at: http://ca.geocities.com/weirfamily@r... > lisaweir@r... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 , We were having a difficult time in getting the school to allow to use the school FM outside of school time. At the time, the attorney we had let the school know that the FM system wasn't any different from a school book that kids bring home. It is a tool that is used for learning and learning doesn't stop at the end of the school day. Therefore, was able to get the FM system used outside of school. It was sent home with her just like a math book would have been had she been in regular ed. We didn't use the school one for long. We were able to get one apporved by T-19 so we had ownership of the FM and as she changed schools, we didn't have to go through the battle with every school change. Just something to think about the next time the subject comes up in a meeting. Sheryl Mom to Mitch 18 & 17 CHARGE > Michele, > We are in the midst of getting all the " stuff " , " people " , " teams " ready for back to school too and I can totally empathize with you on feeling out of sorts. I am so HAPPY about that FM system, I would really like to have one outside of school for Kennedy as well for dance class, at home, etc. I'll have to look into it. I'm glad everything is working out and hopefully you'll have some " normal " time soon. > Hugs, > > > > > , > Mom to Kennedy 6 yr old with CHARGE, 15, 13, and wife to Graeme > New Brunswick, CANADA > Visit the Weir family at: http://ca.geocities.com/weirfamily@r... > lisaweir@r... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 , It sounds to me like you have gotten a lot accomplished already. Kay FM update plus > Here's the update on Aubrie's FM system issues. After letter-writing > and lots of emails to my support people (including you guys and local > specialists), the district was ready to buy Aubrie a wireless unit. But > then I got a private email offer from another CHARGE family to use a > unit they have that is no longer compatible with their child's needs! > It's awesome! I got the new unit, talked to our audiologist who > verified that it will work for Aubrie, and then made a deal with the > district. I will maintain ownership of the unit and will use it at > school and outside of school. They will purchase the boot for Aubrie's > specific hearing aid and maintain the unit for the duration of the time > we use it at school. I am very excited to use the unit at home, dance > class, etc. I can't wait to see how it makes a difference for Aubrie. > I'm so thankful for our CHARGE family who shares joys, sorrows, > frustrations, and even stuff with each other. We are all so fortunate > to have found each other. > > School in the body cast is going well also. They have a window unit a/c > in her room so it has been comfortable even on the few hot days we've > had so far. Her aid and teacher are both wonderful . The specialists > have just started to come in for their first visits of the year so her > therapy schedule will be in place soon. The school is paying the aid to > accompany us to the cast removal appt on Wed (next week already!) so > that she can hear the PT instructions first hand. I hope that they > don't make " clinical " recommendations. There is time at school to fit > lots of therapy in -- she can't do PE or recess well until later anyway > -- so I hope they phrase it all in a way that it can be done by the aid > at school. > > We have an IEP meeting the following week to address the therapy > goals,finalize/formalize the FM system issue, and discuss any concerns > that have come up since school started. The DB specialist will visit > for half a day before the meeting so she can add things if needed. > > Aubrie had her first dental cleaning at the local dentist today. We've > been going to the pediatric dentist at the children's hospital all this > time. He doesn't really try to talk her through it, he's just skilled > at working fast while a kid is being held down. The local dentist we've > always gone to has been great with since he was 2, but didn't > feel competent to take on Aubrie when she was little. Now his daughters > have joined his practice. One of the girls saw Aubrie today and did an > amazing job! She let her pick out sunglasses to wear and keep the light > out of her eyes. She put the suction as low as possible to keep the > noise low and not scare Aubrie. She got all her teeth counted and > looked at, all of them cleaned, and put on a flouride treatment. And > Aubrie did the whole thing well! She was nervous, but she held my hand > and got through it. She was so amazing. I always knew she could do it > if it was approached properly. I'm just so thrilled to have found the > right person right her in town. > > Here's how good our luck is. A year or so before we had Aubrie, the > first pediatrician ever moved into our small town. She is wonderful. > What are the chances? When Aubrie needed a signing aid, a wonderful > lady who had been an interpreter moved into town and took the job. She > moved just as Aubrie's need for sign was waning. What are the chances? > When we needed a new aid, another wonderful lady had moved into town and > took the job. She's been perfect. What are the chances? Just as we're > ready to try a local dentist since we're in the body cast and can't > fight too much, the daughters move home and start in the practice with > an interest in pediatrics. What are the chances? Just when we need an > FM system, one is available. If the district had done what they were > supposed to, I never would have inquired to you guys, never would have > gotten this FM system, and might never have gone to the effort or found > funding to get a home FM system. Just the other day, a friend was > commenting on how things always work out in Aubrie's favor as if she > really does have an angel watching out for her. It's wonderful to feel > blessed sometimes in the midst of all the stuff we have to deal with. > > Today, I have been feeling very separate from my friends and community. > I have been sort of cut off from my work, my friends, and everything it > seems with caring for Aubrie in her cast, getting her school stuff > ready, etc. I have spent the past 2 days getting documents prepared for > Perkins. The several days before that were spent on the FM system > issue. The days before that were spent getting school supplies, > visiting the school, getting them and her prepared, etc. I don't have > anything else to talk about or think about. By the time I get the > documents in order, the FM boot will be in and then I'll spend a day or > 2 on that again. Then the DB specialist will be in for her visit. Then > it'll be the IEP meeting. In there somewhere we have an appt for an > aided hearing exam which is overdue. Oh-- and we'll get the cast off > and have a new focus on gaining strength again. So Aubrie will keep my > focus for a while still. Then it'll be time for the wedding & Perkins > visit in Oct. Plus I have got to get back to the shop sometime. I > posted and put in the paper that my hours would be sporatic at best from > Aug through Oct. But I have orders piling up and the Christmas season > coming so I'll have to get back into it. I had to paint tonight for an > order due this weekend so I'm starting into it again, but I won't take > time to get to regular shop hours again until I am all caught up at home. > > I'm rambling now but I've felt the need to post all day. I'm just " out > of sorts " . Maybe I'll wake up on the right side of the bed tomorrow, > I'll get things accomplished, and feel like I'm on my way to " normal " again. > > 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 September 2, 2004 Report Share Posted September 2, 2004 , It sounds to me like you have gotten a lot accomplished already. Kay FM update plus > Here's the update on Aubrie's FM system issues. After letter-writing > and lots of emails to my support people (including you guys and local > specialists), the district was ready to buy Aubrie a wireless unit. But > then I got a private email offer from another CHARGE family to use a > unit they have that is no longer compatible with their child's needs! > It's awesome! I got the new unit, talked to our audiologist who > verified that it will work for Aubrie, and then made a deal with the > district. I will maintain ownership of the unit and will use it at > school and outside of school. They will purchase the boot for Aubrie's > specific hearing aid and maintain the unit for the duration of the time > we use it at school. I am very excited to use the unit at home, dance > class, etc. I can't wait to see how it makes a difference for Aubrie. > I'm so thankful for our CHARGE family who shares joys, sorrows, > frustrations, and even stuff with each other. We are all so fortunate > to have found each other. > > School in the body cast is going well also. They have a window unit a/c > in her room so it has been comfortable even on the few hot days we've > had so far. Her aid and teacher are both wonderful . The specialists > have just started to come in for their first visits of the year so her > therapy schedule will be in place soon. The school is paying the aid to > accompany us to the cast removal appt on Wed (next week already!) so > that she can hear the PT instructions first hand. I hope that they > don't make " clinical " recommendations. There is time at school to fit > lots of therapy in -- she can't do PE or recess well until later anyway > -- so I hope they phrase it all in a way that it can be done by the aid > at school. > > We have an IEP meeting the following week to address the therapy > goals,finalize/formalize the FM system issue, and discuss any concerns > that have come up since school started. The DB specialist will visit > for half a day before the meeting so she can add things if needed. > > Aubrie had her first dental cleaning at the local dentist today. We've > been going to the pediatric dentist at the children's hospital all this > time. He doesn't really try to talk her through it, he's just skilled > at working fast while a kid is being held down. The local dentist we've > always gone to has been great with since he was 2, but didn't > feel competent to take on Aubrie when she was little. Now his daughters > have joined his practice. One of the girls saw Aubrie today and did an > amazing job! She let her pick out sunglasses to wear and keep the light > out of her eyes. She put the suction as low as possible to keep the > noise low and not scare Aubrie. She got all her teeth counted and > looked at, all of them cleaned, and put on a flouride treatment. And > Aubrie did the whole thing well! She was nervous, but she held my hand > and got through it. She was so amazing. I always knew she could do it > if it was approached properly. I'm just so thrilled to have found the > right person right her in town. > > Here's how good our luck is. A year or so before we had Aubrie, the > first pediatrician ever moved into our small town. She is wonderful. > What are the chances? When Aubrie needed a signing aid, a wonderful > lady who had been an interpreter moved into town and took the job. She > moved just as Aubrie's need for sign was waning. What are the chances? > When we needed a new aid, another wonderful lady had moved into town and > took the job. She's been perfect. What are the chances? Just as we're > ready to try a local dentist since we're in the body cast and can't > fight too much, the daughters move home and start in the practice with > an interest in pediatrics. What are the chances? Just when we need an > FM system, one is available. If the district had done what they were > supposed to, I never would have inquired to you guys, never would have > gotten this FM system, and might never have gone to the effort or found > funding to get a home FM system. Just the other day, a friend was > commenting on how things always work out in Aubrie's favor as if she > really does have an angel watching out for her. It's wonderful to feel > blessed sometimes in the midst of all the stuff we have to deal with. > > Today, I have been feeling very separate from my friends and community. > I have been sort of cut off from my work, my friends, and everything it > seems with caring for Aubrie in her cast, getting her school stuff > ready, etc. I have spent the past 2 days getting documents prepared for > Perkins. The several days before that were spent on the FM system > issue. The days before that were spent getting school supplies, > visiting the school, getting them and her prepared, etc. I don't have > anything else to talk about or think about. By the time I get the > documents in order, the FM boot will be in and then I'll spend a day or > 2 on that again. Then the DB specialist will be in for her visit. Then > it'll be the IEP meeting. In there somewhere we have an appt for an > aided hearing exam which is overdue. Oh-- and we'll get the cast off > and have a new focus on gaining strength again. So Aubrie will keep my > focus for a while still. Then it'll be time for the wedding & Perkins > visit in Oct. Plus I have got to get back to the shop sometime. I > posted and put in the paper that my hours would be sporatic at best from > Aug through Oct. But I have orders piling up and the Christmas season > coming so I'll have to get back into it. I had to paint tonight for an > order due this weekend so I'm starting into it again, but I won't take > time to get to regular shop hours again until I am all caught up at home. > > I'm rambling now but I've felt the need to post all day. I'm just " out > of sorts " . Maybe I'll wake up on the right side of the bed tomorrow, > I'll get things accomplished, and feel like I'm on my way to " normal " again. > > 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 September 2, 2004 Report Share Posted September 2, 2004 , It sounds to me like you have gotten a lot accomplished already. Kay FM update plus > Here's the update on Aubrie's FM system issues. After letter-writing > and lots of emails to my support people (including you guys and local > specialists), the district was ready to buy Aubrie a wireless unit. But > then I got a private email offer from another CHARGE family to use a > unit they have that is no longer compatible with their child's needs! > It's awesome! I got the new unit, talked to our audiologist who > verified that it will work for Aubrie, and then made a deal with the > district. I will maintain ownership of the unit and will use it at > school and outside of school. They will purchase the boot for Aubrie's > specific hearing aid and maintain the unit for the duration of the time > we use it at school. I am very excited to use the unit at home, dance > class, etc. I can't wait to see how it makes a difference for Aubrie. > I'm so thankful for our CHARGE family who shares joys, sorrows, > frustrations, and even stuff with each other. We are all so fortunate > to have found each other. > > School in the body cast is going well also. They have a window unit a/c > in her room so it has been comfortable even on the few hot days we've > had so far. Her aid and teacher are both wonderful . The specialists > have just started to come in for their first visits of the year so her > therapy schedule will be in place soon. The school is paying the aid to > accompany us to the cast removal appt on Wed (next week already!) so > that she can hear the PT instructions first hand. I hope that they > don't make " clinical " recommendations. There is time at school to fit > lots of therapy in -- she can't do PE or recess well until later anyway > -- so I hope they phrase it all in a way that it can be done by the aid > at school. > > We have an IEP meeting the following week to address the therapy > goals,finalize/formalize the FM system issue, and discuss any concerns > that have come up since school started. The DB specialist will visit > for half a day before the meeting so she can add things if needed. > > Aubrie had her first dental cleaning at the local dentist today. We've > been going to the pediatric dentist at the children's hospital all this > time. He doesn't really try to talk her through it, he's just skilled > at working fast while a kid is being held down. The local dentist we've > always gone to has been great with since he was 2, but didn't > feel competent to take on Aubrie when she was little. Now his daughters > have joined his practice. One of the girls saw Aubrie today and did an > amazing job! She let her pick out sunglasses to wear and keep the light > out of her eyes. She put the suction as low as possible to keep the > noise low and not scare Aubrie. She got all her teeth counted and > looked at, all of them cleaned, and put on a flouride treatment. And > Aubrie did the whole thing well! She was nervous, but she held my hand > and got through it. She was so amazing. I always knew she could do it > if it was approached properly. I'm just so thrilled to have found the > right person right her in town. > > Here's how good our luck is. A year or so before we had Aubrie, the > first pediatrician ever moved into our small town. She is wonderful. > What are the chances? When Aubrie needed a signing aid, a wonderful > lady who had been an interpreter moved into town and took the job. She > moved just as Aubrie's need for sign was waning. What are the chances? > When we needed a new aid, another wonderful lady had moved into town and > took the job. She's been perfect. What are the chances? Just as we're > ready to try a local dentist since we're in the body cast and can't > fight too much, the daughters move home and start in the practice with > an interest in pediatrics. What are the chances? Just when we need an > FM system, one is available. If the district had done what they were > supposed to, I never would have inquired to you guys, never would have > gotten this FM system, and might never have gone to the effort or found > funding to get a home FM system. Just the other day, a friend was > commenting on how things always work out in Aubrie's favor as if she > really does have an angel watching out for her. It's wonderful to feel > blessed sometimes in the midst of all the stuff we have to deal with. > > Today, I have been feeling very separate from my friends and community. > I have been sort of cut off from my work, my friends, and everything it > seems with caring for Aubrie in her cast, getting her school stuff > ready, etc. I have spent the past 2 days getting documents prepared for > Perkins. The several days before that were spent on the FM system > issue. The days before that were spent getting school supplies, > visiting the school, getting them and her prepared, etc. I don't have > anything else to talk about or think about. By the time I get the > documents in order, the FM boot will be in and then I'll spend a day or > 2 on that again. Then the DB specialist will be in for her visit. Then > it'll be the IEP meeting. In there somewhere we have an appt for an > aided hearing exam which is overdue. Oh-- and we'll get the cast off > and have a new focus on gaining strength again. So Aubrie will keep my > focus for a while still. Then it'll be time for the wedding & Perkins > visit in Oct. Plus I have got to get back to the shop sometime. I > posted and put in the paper that my hours would be sporatic at best from > Aug through Oct. But I have orders piling up and the Christmas season > coming so I'll have to get back into it. I had to paint tonight for an > order due this weekend so I'm starting into it again, but I won't take > time to get to regular shop hours again until I am all caught up at home. > > I'm rambling now but I've felt the need to post all day. I'm just " out > of sorts " . Maybe I'll wake up on the right side of the bed tomorrow, > I'll get things accomplished, and feel like I'm on my way to " normal " again. > > 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 September 2, 2004 Report Share Posted September 2, 2004 yes and I am sooooooo looking forward to it, I am so behind from all the summer pics. and I don't even want to think about how far behind on the boys' albums. but, it's fun just to go watch movies, eat and talk, all while getting tons of pages done. maria Re: FM update plus > > ha ha, another scrapbooker! Good for you ...we deserve our crop time! > > > > , > Mom to Kennedy 6 yr old with CHARGE, 15, 13, and wife to Graeme > New Brunswick, CANADA > Visit the Weir family at: http://ca.geocities.com/weirfamilyrogers > lisaweir@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 yes and I am sooooooo looking forward to it, I am so behind from all the summer pics. and I don't even want to think about how far behind on the boys' albums. but, it's fun just to go watch movies, eat and talk, all while getting tons of pages done. maria Re: FM update plus > > ha ha, another scrapbooker! Good for you ...we deserve our crop time! > > > > , > Mom to Kennedy 6 yr old with CHARGE, 15, 13, and wife to Graeme > New Brunswick, CANADA > Visit the Weir family at: http://ca.geocities.com/weirfamilyrogers > lisaweir@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 just think how much she's accomplished in those 20 years--did you think she could in the beginning? I'm amazed at tim in 9 years, I can't imagine 20!!! have a great week. and you're not old!!!! maria Re: FM update plus > > > > - > > The 40 thing hit me hard too. Took me several months to adjust, but I'm > > fine with it now. Now it feels like just a number -- can't believe I'll > > be 41 in Oct. It's one thing to /be/ 40 and another to be/ over /40 > > :-) I hope your dates are as wonderful as you anticipate. DJ > > and I need something really fun like that. We've been able to get away > > for dinner here and there (less and less lately) but we never doing > > anything really special. > > > > Aubrie wants to swim too. I am thinking that I may sign her up this > > winter. I'm not anxious to add anything to our schedule (I'm learning > > to say " no " ) especially cuz the YMCA is in the next town 40 min away. > > But she's really really wanting to learn so it seems like lessons > > before the summer season and then again in the summer would be good for > > her. Too bad hates swimming now -- after years of being on the > > swim team and doing really well -- says he hates it now cuz we made him > > swim for those years -- I can just see him on Oprah " Parents who ruin > > their kids fun by turning it into work " . > > > > Once everyone gets into the school schedule, things will feel better for > > you. Scheduled and routine busy is better than random crazy busy. > > > > Good luck with the dental issues. The dentist yesterday pointed out > > that Aubrie will likely need a palate expansion but now we'll have to > > wait til it's ok as far as her palate repair. I hadn't thought about > > the dentist and plastic surgeon needing to be coordinated. Since the > > palate repair was critical for speech, there would have been no delaying > > it, but I hope it doesn't lead to orthodontic issues being complicated. > > > > 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 September 2, 2004 Report Share Posted September 2, 2004 just think how much she's accomplished in those 20 years--did you think she could in the beginning? I'm amazed at tim in 9 years, I can't imagine 20!!! have a great week. and you're not old!!!! maria Re: FM update plus > > > > - > > The 40 thing hit me hard too. Took me several months to adjust, but I'm > > fine with it now. Now it feels like just a number -- can't believe I'll > > be 41 in Oct. It's one thing to /be/ 40 and another to be/ over /40 > > :-) I hope your dates are as wonderful as you anticipate. DJ > > and I need something really fun like that. We've been able to get away > > for dinner here and there (less and less lately) but we never doing > > anything really special. > > > > Aubrie wants to swim too. I am thinking that I may sign her up this > > winter. I'm not anxious to add anything to our schedule (I'm learning > > to say " no " ) especially cuz the YMCA is in the next town 40 min away. > > But she's really really wanting to learn so it seems like lessons > > before the summer season and then again in the summer would be good for > > her. Too bad hates swimming now -- after years of being on the > > swim team and doing really well -- says he hates it now cuz we made him > > swim for those years -- I can just see him on Oprah " Parents who ruin > > their kids fun by turning it into work " . > > > > Once everyone gets into the school schedule, things will feel better for > > you. Scheduled and routine busy is better than random crazy busy. > > > > Good luck with the dental issues. The dentist yesterday pointed out > > that Aubrie will likely need a palate expansion but now we'll have to > > wait til it's ok as far as her palate repair. I hadn't thought about > > the dentist and plastic surgeon needing to be coordinated. Since the > > palate repair was critical for speech, there would have been no delaying > > it, but I hope it doesn't lead to orthodontic issues being complicated. > > > > 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 September 2, 2004 Report Share Posted September 2, 2004 just think how much she's accomplished in those 20 years--did you think she could in the beginning? I'm amazed at tim in 9 years, I can't imagine 20!!! have a great week. and you're not old!!!! maria Re: FM update plus > > > > - > > The 40 thing hit me hard too. Took me several months to adjust, but I'm > > fine with it now. Now it feels like just a number -- can't believe I'll > > be 41 in Oct. It's one thing to /be/ 40 and another to be/ over /40 > > :-) I hope your dates are as wonderful as you anticipate. DJ > > and I need something really fun like that. We've been able to get away > > for dinner here and there (less and less lately) but we never doing > > anything really special. > > > > Aubrie wants to swim too. I am thinking that I may sign her up this > > winter. I'm not anxious to add anything to our schedule (I'm learning > > to say " no " ) especially cuz the YMCA is in the next town 40 min away. > > But she's really really wanting to learn so it seems like lessons > > before the summer season and then again in the summer would be good for > > her. Too bad hates swimming now -- after years of being on the > > swim team and doing really well -- says he hates it now cuz we made him > > swim for those years -- I can just see him on Oprah " Parents who ruin > > their kids fun by turning it into work " . > > > > Once everyone gets into the school schedule, things will feel better for > > you. Scheduled and routine busy is better than random crazy busy. > > > > Good luck with the dental issues. The dentist yesterday pointed out > > that Aubrie will likely need a palate expansion but now we'll have to > > wait til it's ok as far as her palate repair. I hadn't thought about > > the dentist and plastic surgeon needing to be coordinated. Since the > > palate repair was critical for speech, there would have been no delaying > > it, but I hope it doesn't lead to orthodontic issues being complicated. > > > > 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 September 2, 2004 Report Share Posted September 2, 2004 wesley has been in cub scouts he has enjoyed it most the time. some things where adjusted to him and his abilities. we are now getting him into 11 year old scouts as tomorrow is his b day and we have to tell the council what adjustments we think he needs and they have to ok it. so we are in the middle of letters about what he can and cant do. but we feel its best for him to keep up with it as much as he can. it was his trying scouts that led to his desire to eat by mouth. KayRena mom of Wesley Charger 11 (tomorrow) Jake 8 Tristen 7 Zach 4 and KayLeigh 2 months Michele Westmaas wrote: > wrote: > > > > > anyone do boy/cub scouts? thinking about it for both boys--but pat > > would be > > in charge this time > > > Sounds like a winner to me! And eventually all 3 would be involved > and > mom would have some " lady " time!!!! Yippee! Now-- when that time > comes, don't fill it with other obligations. Take some well-deserved > quiet time. > > Michele W > Aubrie's mom > > > > 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 September 2, 2004 Report Share Posted September 2, 2004 wesley has been in cub scouts he has enjoyed it most the time. some things where adjusted to him and his abilities. we are now getting him into 11 year old scouts as tomorrow is his b day and we have to tell the council what adjustments we think he needs and they have to ok it. so we are in the middle of letters about what he can and cant do. but we feel its best for him to keep up with it as much as he can. it was his trying scouts that led to his desire to eat by mouth. KayRena mom of Wesley Charger 11 (tomorrow) Jake 8 Tristen 7 Zach 4 and KayLeigh 2 months Michele Westmaas wrote: > wrote: > > > > > anyone do boy/cub scouts? thinking about it for both boys--but pat > > would be > > in charge this time > > > Sounds like a winner to me! And eventually all 3 would be involved > and > mom would have some " lady " time!!!! Yippee! Now-- when that time > comes, don't fill it with other obligations. Take some well-deserved > quiet time. > > Michele W > Aubrie's mom > > > > 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 September 2, 2004 Report Share Posted September 2, 2004 wesley has been in cub scouts he has enjoyed it most the time. some things where adjusted to him and his abilities. we are now getting him into 11 year old scouts as tomorrow is his b day and we have to tell the council what adjustments we think he needs and they have to ok it. so we are in the middle of letters about what he can and cant do. but we feel its best for him to keep up with it as much as he can. it was his trying scouts that led to his desire to eat by mouth. KayRena mom of Wesley Charger 11 (tomorrow) Jake 8 Tristen 7 Zach 4 and KayLeigh 2 months Michele Westmaas wrote: > wrote: > > > > > anyone do boy/cub scouts? thinking about it for both boys--but pat > > would be > > in charge this time > > > Sounds like a winner to me! And eventually all 3 would be involved > and > mom would have some " lady " time!!!! Yippee! Now-- when that time > comes, don't fill it with other obligations. Take some well-deserved > quiet time. > > Michele W > Aubrie's mom > > > > 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 September 4, 2004 Report Share Posted September 4, 2004 Kay, We 50's can stay young together. Lynn Re: FM update plus > > > > - > > The 40 thing hit me hard too. Took me several months to adjust, but I'm > > fine with it now. Now it feels like just a number -- can't believe I'll > > be 41 in Oct. It's one thing to /be/ 40 and another to be/ over /40 > > :-) I hope your dates are as wonderful as you anticipate. DJ > > and I need something really fun like that. We've been able to get away > > for dinner here and there (less and less lately) but we never doing > > anything really special. > > > > Aubrie wants to swim too. I am thinking that I may sign her up this > > winter. I'm not anxious to add anything to our schedule (I'm learning > > to say " no " ) especially cuz the YMCA is in the next town 40 min away. > > But she's really really wanting to learn so it seems like lessons > > before the summer season and then again in the summer would be good for > > her. Too bad hates swimming now -- after years of being on the > > swim team and doing really well -- says he hates it now cuz we made him > > swim for those years -- I can just see him on Oprah " Parents who ruin > > their kids fun by turning it into work " . > > > > Once everyone gets into the school schedule, things will feel better for > > you. Scheduled and routine busy is better than random crazy busy. > > > > Good luck with the dental issues. The dentist yesterday pointed out > > that Aubrie will likely need a palate expansion but now we'll have to > > wait til it's ok as far as her palate repair. I hadn't thought about > > the dentist and plastic surgeon needing to be coordinated. Since the > > palate repair was critical for speech, there would have been no delaying > > it, but I hope it doesn't lead to orthodontic issues being complicated. > > > > 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 September 4, 2004 Report Share Posted September 4, 2004 Kay, We 50's can stay young together. Lynn Re: FM update plus > > > > - > > The 40 thing hit me hard too. Took me several months to adjust, but I'm > > fine with it now. Now it feels like just a number -- can't believe I'll > > be 41 in Oct. It's one thing to /be/ 40 and another to be/ over /40 > > :-) I hope your dates are as wonderful as you anticipate. DJ > > and I need something really fun like that. We've been able to get away > > for dinner here and there (less and less lately) but we never doing > > anything really special. > > > > Aubrie wants to swim too. I am thinking that I may sign her up this > > winter. I'm not anxious to add anything to our schedule (I'm learning > > to say " no " ) especially cuz the YMCA is in the next town 40 min away. > > But she's really really wanting to learn so it seems like lessons > > before the summer season and then again in the summer would be good for > > her. Too bad hates swimming now -- after years of being on the > > swim team and doing really well -- says he hates it now cuz we made him > > swim for those years -- I can just see him on Oprah " Parents who ruin > > their kids fun by turning it into work " . > > > > Once everyone gets into the school schedule, things will feel better for > > you. Scheduled and routine busy is better than random crazy busy. > > > > Good luck with the dental issues. The dentist yesterday pointed out > > that Aubrie will likely need a palate expansion but now we'll have to > > wait til it's ok as far as her palate repair. I hadn't thought about > > the dentist and plastic surgeon needing to be coordinated. Since the > > palate repair was critical for speech, there would have been no delaying > > it, but I hope it doesn't lead to orthodontic issues being complicated. > > > > 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 September 4, 2004 Report Share Posted September 4, 2004 ....and I am almost 53!!! For those of you turning 40, happy birthday(s). It is all uphill from here!!! I LOVED turning 50 and am enjoying each successive birthday, too!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 ....and I am almost 53!!! For those of you turning 40, happy birthday(s). It is all uphill from here!!! I LOVED turning 50 and am enjoying each successive birthday, too!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 Pam, You, Kay and I can " party " on. I too love being 53 !! Lynn RE: FM update plus ...and I am almost 53!!! For those of you turning 40, happy birthday(s). It is all uphill from here!!! I LOVED turning 50 and am enjoying each successive birthday, too!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 Pam, You, Kay and I can " party " on. I too love being 53 !! Lynn RE: FM update plus ...and I am almost 53!!! For those of you turning 40, happy birthday(s). It is all uphill from here!!! I LOVED turning 50 and am enjoying each successive birthday, too!! pam Quote Link to comment Share on other sites More sharing options...
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