Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Thanks Jane. I totally agree with you Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 6:25:42 PMSubject: Re: Too sensitive?? NO! I would rather people have accurate info. However, I also prefer that family not make more of the situation. I am always retelling Grace's story because I hate sitting there and listing to a family member tell someone about her and her medical issues and get it wrong or make more of part of it than it really was. Like they'll say, she "could" have died. Well technically, yes, kids die from Omphalocele' s, but no, Grace was never near death. So again, YES, tell them over and over the accurate info if you have to! Jane From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 3:55:21 PMSubject: [infantile_scoliosi s] Too sensitive?? My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Thanks Jane. I totally agree with you Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 6:25:42 PMSubject: Re: Too sensitive?? NO! I would rather people have accurate info. However, I also prefer that family not make more of the situation. I am always retelling Grace's story because I hate sitting there and listing to a family member tell someone about her and her medical issues and get it wrong or make more of part of it than it really was. Like they'll say, she "could" have died. Well technically, yes, kids die from Omphalocele' s, but no, Grace was never near death. So again, YES, tell them over and over the accurate info if you have to! Jane From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 3:55:21 PMSubject: [infantile_scoliosi s] Too sensitive?? My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Thanks Jane. I totally agree with you Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 6:25:42 PMSubject: Re: Too sensitive?? NO! I would rather people have accurate info. However, I also prefer that family not make more of the situation. I am always retelling Grace's story because I hate sitting there and listing to a family member tell someone about her and her medical issues and get it wrong or make more of part of it than it really was. Like they'll say, she "could" have died. Well technically, yes, kids die from Omphalocele' s, but no, Grace was never near death. So again, YES, tell them over and over the accurate info if you have to! Jane From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 3:55:21 PMSubject: [infantile_scoliosi s] Too sensitive?? My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Chrissy and Joan,I did the same thing. I had a list of family members and friends that I would send out an email right before we were scheduled for a cast change.Updating from the previous and explaining in detail what the doctor's plan and hope was for the new one. And I always sent a picture of in his new cast. At one point I had Dr. R take pictures in the OR. I wanted to see what they were doing with my baby!The boys have a webpage and I posted those pictures there. WOW! Talk about shocking some family and friends. They realized how serious it was then. I didn't post the pictures to shock them, but I wanted people to see what he was going through.Updates through emails or the Caring Bridge like suggested would be great! This might help get the point across.Most of all it would be educating them. TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: Chrissa To: infantile_scoliosis Sent: Thu, January 21, 2010 7:46:18 PMSubject: Re: Too sensitive?? Joan, I am in COMPLETE agreement with you and am proud of you for what you've said to your SIL. If our own families can't understand, accept, empathize and support the full picture of what our children endure and battle month in and month out, who can!? I think you were/are in the right to speak out and if we all do this gently but articulately with passion and sincerity, perhaps more will understand the journey our kids...and ourselves have to go through. Just a side note, I often give updates that I send out to family and friends about what Jack is up against next...what the doctors are saying, where he's at emotionally and physicallly with milestones, etc. Not all the time (I'm actually due for one) but certainly at the start/finish of each casting and then maybe one or two in between. Maybe this could help really send a message of your day to day trials and tribulations. ..a small window into your life? I've found often, that the more I communicate about how it feels, hurts, scares,etc.the more the close poeple in my life begin to "get it"...or at least start to come close to getting it. Just a suggestion. Keep breathing and being strong. Again, I'm proud of you! Chrissy Mom to and Cameron (22 mo ) and Natalei (6) casted on Nov. 5-#1 Chicago Shriners From: Joan Vallee <hayro1611yahoo (DOT) com>Subject: [infantile_scoliosi s] Too sensitive??To: infantile_scoliosis @yahoogroups. comDate: Thursday, January 21, 2010, 5:55 PM My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Chrissy and Joan,I did the same thing. I had a list of family members and friends that I would send out an email right before we were scheduled for a cast change.Updating from the previous and explaining in detail what the doctor's plan and hope was for the new one. And I always sent a picture of in his new cast. At one point I had Dr. R take pictures in the OR. I wanted to see what they were doing with my baby!The boys have a webpage and I posted those pictures there. WOW! Talk about shocking some family and friends. They realized how serious it was then. I didn't post the pictures to shock them, but I wanted people to see what he was going through.Updates through emails or the Caring Bridge like suggested would be great! This might help get the point across.Most of all it would be educating them. TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: Chrissa To: infantile_scoliosis Sent: Thu, January 21, 2010 7:46:18 PMSubject: Re: Too sensitive?? Joan, I am in COMPLETE agreement with you and am proud of you for what you've said to your SIL. If our own families can't understand, accept, empathize and support the full picture of what our children endure and battle month in and month out, who can!? I think you were/are in the right to speak out and if we all do this gently but articulately with passion and sincerity, perhaps more will understand the journey our kids...and ourselves have to go through. Just a side note, I often give updates that I send out to family and friends about what Jack is up against next...what the doctors are saying, where he's at emotionally and physicallly with milestones, etc. Not all the time (I'm actually due for one) but certainly at the start/finish of each casting and then maybe one or two in between. Maybe this could help really send a message of your day to day trials and tribulations. ..a small window into your life? I've found often, that the more I communicate about how it feels, hurts, scares,etc.the more the close poeple in my life begin to "get it"...or at least start to come close to getting it. Just a suggestion. Keep breathing and being strong. Again, I'm proud of you! Chrissy Mom to and Cameron (22 mo ) and Natalei (6) casted on Nov. 5-#1 Chicago Shriners From: Joan Vallee <hayro1611yahoo (DOT) com>Subject: [infantile_scoliosi s] Too sensitive??To: infantile_scoliosis @yahoogroups. comDate: Thursday, January 21, 2010, 5:55 PM My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Thanks Tasha!! Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 6:47:16 PMSubject: Re: Too sensitive?? NO, not too sensitive! I went through 14 months of educating some family members and friends during 's casting days.Oh and still do....LOL!You did the right thing! TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 5:55:21 PMSubject: [infantile_scoliosi s] Too sensitive?? My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Thanks Tasha!! Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 6:47:16 PMSubject: Re: Too sensitive?? NO, not too sensitive! I went through 14 months of educating some family members and friends during 's casting days.Oh and still do....LOL!You did the right thing! TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 5:55:21 PMSubject: [infantile_scoliosi s] Too sensitive?? My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Chrissy, thank you for what you posted. It means alot to me. And very good idea. I am going to email/snail mail updates of Hayden every so often and even include the not so pleasant details of Casting/Scoli. Thanks again Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 7:46:18 PMSubject: Re: Too sensitive?? Joan, I am in COMPLETE agreement with you and am proud of you for what you've said to your SIL. If our own families can't understand, accept, empathize and support the full picture of what our children endure and battle month in and month out, who can!? I think you were/are in the right to speak out and if we all do this gently but articulately with passion and sincerity, perhaps more will understand the journey our kids...and ourselves have to go through. Just a side note, I often give updates that I send out to family and friends about what Jack is up against next...what the doctors are saying, where he's at emotionally and physicallly with milestones, etc. Not all the time (I'm actually due for one) but certainly at the start/finish of each casting and then maybe one or two in between. Maybe this could help really send a message of your day to day trials and tribulations. ..a small window into your life? I've found often, that the more I communicate about how it feels, hurts, scares,etc.the more the close poeple in my life begin to "get it"...or at least start to come close to getting it. Just a suggestion. Keep breathing and being strong. Again, I'm proud of you! Chrissy Mom to and Cameron (22 mo ) and Natalei (6) casted on Nov. 5-#1 Chicago Shriners From: Joan Vallee <hayro1611yahoo (DOT) com>Subject: [infantile_scoliosi s] Too sensitive??To: infantile_scoliosis @yahoogroups. comDate: Thursday, January 21, 2010, 5:55 PM My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Chrissy, thank you for what you posted. It means alot to me. And very good idea. I am going to email/snail mail updates of Hayden every so often and even include the not so pleasant details of Casting/Scoli. Thanks again Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 7:46:18 PMSubject: Re: Too sensitive?? Joan, I am in COMPLETE agreement with you and am proud of you for what you've said to your SIL. If our own families can't understand, accept, empathize and support the full picture of what our children endure and battle month in and month out, who can!? I think you were/are in the right to speak out and if we all do this gently but articulately with passion and sincerity, perhaps more will understand the journey our kids...and ourselves have to go through. Just a side note, I often give updates that I send out to family and friends about what Jack is up against next...what the doctors are saying, where he's at emotionally and physicallly with milestones, etc. Not all the time (I'm actually due for one) but certainly at the start/finish of each casting and then maybe one or two in between. Maybe this could help really send a message of your day to day trials and tribulations. ..a small window into your life? I've found often, that the more I communicate about how it feels, hurts, scares,etc.the more the close poeple in my life begin to "get it"...or at least start to come close to getting it. Just a suggestion. Keep breathing and being strong. Again, I'm proud of you! Chrissy Mom to and Cameron (22 mo ) and Natalei (6) casted on Nov. 5-#1 Chicago Shriners From: Joan Vallee <hayro1611yahoo (DOT) com>Subject: [infantile_scoliosi s] Too sensitive??To: infantile_scoliosis @yahoogroups. comDate: Thursday, January 21, 2010, 5:55 PM My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Tasha, I ALMOST asked Dr R to take pictures Tuesday, but I know my husband would have been mad at me. But I really want a picture of Hayden on the Table getting casted. I think I will ask next time. What was Dr R's initial reaction to your request??? Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 8:57:21 PMSubject: Re: Too sensitive?? Chrissy and Joan,I did the same thing. I had a list of family members and friends that I would send out an email right before we were scheduled for a cast change.Updating from the previous and explaining in detail what the doctor's plan and hope was for the new one. And I always sent a picture of in his new cast. At one point I had Dr. R take pictures in the OR. I wanted to see what they were doing with my baby!The boys have a webpage and I posted those pictures there. WOW! Talk about shocking some family and friends. They realized how serious it was then. I didn't post the pictures to shock them, but I wanted people to see what he was going through.Updates through emails or the Caring Bridge like suggested would be great! This might help get the point across.Most of all it would be educating them. TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html From: Chrissa <christenandpooks42@ sbcglobal. net>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:46:18 PMSubject: Re: [infantile_scoliosi s] Too sensitive?? Joan, I am in COMPLETE agreement with you and am proud of you for what you've said to your SIL. If our own families can't understand, accept, empathize and support the full picture of what our children endure and battle month in and month out, who can!? I think you were/are in the right to speak out and if we all do this gently but articulately with passion and sincerity, perhaps more will understand the journey our kids...and ourselves have to go through. Just a side note, I often give updates that I send out to family and friends about what Jack is up against next...what the doctors are saying, where he's at emotionally and physicallly with milestones, etc. Not all the time (I'm actually due for one) but certainly at the start/finish of each casting and then maybe one or two in between. Maybe this could help really send a message of your day to day trials and tribulations. ...a small window into your life? I've found often, that the more I communicate about how it feels, hurts, scares,etc.the more the close poeple in my life begin to "get it"...or at least start to come close to getting it. Just a suggestion. Keep breathing and being strong. Again, I'm proud of you! Chrissy Mom to and Cameron (22 mo ) and Natalei (6) casted on Nov. 5-#1 Chicago Shriners From: Joan Vallee <hayro1611yahoo (DOT) com>Subject: [infantile_scoliosi s] Too sensitive??To: infantile_scoliosis @yahoogroups. comDate: Thursday, January 21, 2010, 5:55 PM My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Tasha, I ALMOST asked Dr R to take pictures Tuesday, but I know my husband would have been mad at me. But I really want a picture of Hayden on the Table getting casted. I think I will ask next time. What was Dr R's initial reaction to your request??? Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 8:57:21 PMSubject: Re: Too sensitive?? Chrissy and Joan,I did the same thing. I had a list of family members and friends that I would send out an email right before we were scheduled for a cast change.Updating from the previous and explaining in detail what the doctor's plan and hope was for the new one. And I always sent a picture of in his new cast. At one point I had Dr. R take pictures in the OR. I wanted to see what they were doing with my baby!The boys have a webpage and I posted those pictures there. WOW! Talk about shocking some family and friends. They realized how serious it was then. I didn't post the pictures to shock them, but I wanted people to see what he was going through.Updates through emails or the Caring Bridge like suggested would be great! This might help get the point across.Most of all it would be educating them. TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html From: Chrissa <christenandpooks42@ sbcglobal. net>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:46:18 PMSubject: Re: [infantile_scoliosi s] Too sensitive?? Joan, I am in COMPLETE agreement with you and am proud of you for what you've said to your SIL. If our own families can't understand, accept, empathize and support the full picture of what our children endure and battle month in and month out, who can!? I think you were/are in the right to speak out and if we all do this gently but articulately with passion and sincerity, perhaps more will understand the journey our kids...and ourselves have to go through. Just a side note, I often give updates that I send out to family and friends about what Jack is up against next...what the doctors are saying, where he's at emotionally and physicallly with milestones, etc. Not all the time (I'm actually due for one) but certainly at the start/finish of each casting and then maybe one or two in between. Maybe this could help really send a message of your day to day trials and tribulations. ...a small window into your life? I've found often, that the more I communicate about how it feels, hurts, scares,etc.the more the close poeple in my life begin to "get it"...or at least start to come close to getting it. Just a suggestion. Keep breathing and being strong. Again, I'm proud of you! Chrissy Mom to and Cameron (22 mo ) and Natalei (6) casted on Nov. 5-#1 Chicago Shriners From: Joan Vallee <hayro1611yahoo (DOT) com>Subject: [infantile_scoliosi s] Too sensitive??To: infantile_scoliosis @yahoogroups. comDate: Thursday, January 21, 2010, 5:55 PM My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Tasha, I ALMOST asked Dr R to take pictures Tuesday, but I know my husband would have been mad at me. But I really want a picture of Hayden on the Table getting casted. I think I will ask next time. What was Dr R's initial reaction to your request??? Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 8:57:21 PMSubject: Re: Too sensitive?? Chrissy and Joan,I did the same thing. I had a list of family members and friends that I would send out an email right before we were scheduled for a cast change.Updating from the previous and explaining in detail what the doctor's plan and hope was for the new one. And I always sent a picture of in his new cast. At one point I had Dr. R take pictures in the OR. I wanted to see what they were doing with my baby!The boys have a webpage and I posted those pictures there. WOW! Talk about shocking some family and friends. They realized how serious it was then. I didn't post the pictures to shock them, but I wanted people to see what he was going through.Updates through emails or the Caring Bridge like suggested would be great! This might help get the point across.Most of all it would be educating them. TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html From: Chrissa <christenandpooks42@ sbcglobal. net>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:46:18 PMSubject: Re: [infantile_scoliosi s] Too sensitive?? Joan, I am in COMPLETE agreement with you and am proud of you for what you've said to your SIL. If our own families can't understand, accept, empathize and support the full picture of what our children endure and battle month in and month out, who can!? I think you were/are in the right to speak out and if we all do this gently but articulately with passion and sincerity, perhaps more will understand the journey our kids...and ourselves have to go through. Just a side note, I often give updates that I send out to family and friends about what Jack is up against next...what the doctors are saying, where he's at emotionally and physicallly with milestones, etc. Not all the time (I'm actually due for one) but certainly at the start/finish of each casting and then maybe one or two in between. Maybe this could help really send a message of your day to day trials and tribulations. ...a small window into your life? I've found often, that the more I communicate about how it feels, hurts, scares,etc.the more the close poeple in my life begin to "get it"...or at least start to come close to getting it. Just a suggestion. Keep breathing and being strong. Again, I'm proud of you! Chrissy Mom to and Cameron (22 mo ) and Natalei (6) casted on Nov. 5-#1 Chicago Shriners From: Joan Vallee <hayro1611yahoo (DOT) com>Subject: [infantile_scoliosi s] Too sensitive??To: infantile_scoliosis @yahoogroups. comDate: Thursday, January 21, 2010, 5:55 PM My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 You're right Connie, Knowledge is POWER... thanks Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 8:09:08 PMSubject: Re: Too sensitive?? Joan, You were right to explain to her what exactly is going on....Maybe she just doesn't get it.. Most people associate scoliosis with teenage girls and think that it's so common and just don't understand the difference. Knowledge is power! Connie [infantile_scoliosi s] Too sensitive?? My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 You're right Connie, Knowledge is POWER... thanks Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 8:09:08 PMSubject: Re: Too sensitive?? Joan, You were right to explain to her what exactly is going on....Maybe she just doesn't get it.. Most people associate scoliosis with teenage girls and think that it's so common and just don't understand the difference. Knowledge is power! Connie [infantile_scoliosi s] Too sensitive?? My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 You're right Connie, Knowledge is POWER... thanks Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 8:09:08 PMSubject: Re: Too sensitive?? Joan, You were right to explain to her what exactly is going on....Maybe she just doesn't get it.. Most people associate scoliosis with teenage girls and think that it's so common and just don't understand the difference. Knowledge is power! Connie [infantile_scoliosi s] Too sensitive?? My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 What a great idea. Kudos to you!!! This is what this group is all about. Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 9:24:37 PMSubject: Re: Too sensitive?? My daughter called SLC to ask if we could video Londynn's first casting - they said we couldn't but she thought someone else - non family member could - We are going to take our video camera just in case as well as our digital - we are hoping to chronical her steps thru this journey and hopefully get our local tv stations to run our story and possibly the PSA (if allowed). I know we haven't been in the trenches like you guys have - we will only be getting our first cast in a few weeks - but I have found that the more I speak about Londynn's situation, what the doctors expect, what we expect, etc - that people are more sensitive to the situation.. When I sent everyone the Extraordinary Measures link - the responses I got were - "I had no idea how serious this disease was - I'm so glad that you found out about this procedure" > > > >From: Joan Vallee <hayro1611yahoo (DOT) com>> >Subject: [infantile_scoliosi s] Too sensitive??> >To: infantile_scoliosis @yahoogroups. com> >Date: Thursday, January 21, 2010, 5:55 PM> >> >> > > >My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal"...... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me.....> > Joan> >mom to Hayden 3> >43 degrees down from 62> >Cast number 3> >Treated at ish Rite Hospital > >Dallas, TX > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 What a great idea. Kudos to you!!! This is what this group is all about. Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 9:24:37 PMSubject: Re: Too sensitive?? My daughter called SLC to ask if we could video Londynn's first casting - they said we couldn't but she thought someone else - non family member could - We are going to take our video camera just in case as well as our digital - we are hoping to chronical her steps thru this journey and hopefully get our local tv stations to run our story and possibly the PSA (if allowed). I know we haven't been in the trenches like you guys have - we will only be getting our first cast in a few weeks - but I have found that the more I speak about Londynn's situation, what the doctors expect, what we expect, etc - that people are more sensitive to the situation.. When I sent everyone the Extraordinary Measures link - the responses I got were - "I had no idea how serious this disease was - I'm so glad that you found out about this procedure" > > > >From: Joan Vallee <hayro1611yahoo (DOT) com>> >Subject: [infantile_scoliosi s] Too sensitive??> >To: infantile_scoliosis @yahoogroups. com> >Date: Thursday, January 21, 2010, 5:55 PM> >> >> > > >My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal"...... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me.....> > Joan> >mom to Hayden 3> >43 degrees down from 62> >Cast number 3> >Treated at ish Rite Hospital > >Dallas, TX > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 What a great idea. Kudos to you!!! This is what this group is all about. Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 9:24:37 PMSubject: Re: Too sensitive?? My daughter called SLC to ask if we could video Londynn's first casting - they said we couldn't but she thought someone else - non family member could - We are going to take our video camera just in case as well as our digital - we are hoping to chronical her steps thru this journey and hopefully get our local tv stations to run our story and possibly the PSA (if allowed). I know we haven't been in the trenches like you guys have - we will only be getting our first cast in a few weeks - but I have found that the more I speak about Londynn's situation, what the doctors expect, what we expect, etc - that people are more sensitive to the situation.. When I sent everyone the Extraordinary Measures link - the responses I got were - "I had no idea how serious this disease was - I'm so glad that you found out about this procedure" > > > >From: Joan Vallee <hayro1611yahoo (DOT) com>> >Subject: [infantile_scoliosi s] Too sensitive??> >To: infantile_scoliosis @yahoogroups. com> >Date: Thursday, January 21, 2010, 5:55 PM> >> >> > > >My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal"...... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me.....> > Joan> >mom to Hayden 3> >43 degrees down from 62> >Cast number 3> >Treated at ish Rite Hospital > >Dallas, TX > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Joan, Along the same lines as what Chrissy suggessted...when Makenna was first diagnosed and the rug was pulled from under our feet, I started a website with a blog to keep family members and friends updated. I just couldn't keep telling the story over and over, it was all too fresh. The website allows me to have all the information in one place, the blog allows me to give updates as we go, I have pictures of Makenna in the cast, and I have a links page so that people can find out more on their own. I haven't done it yet, but I am going to print out business cards for Makenna that have her website on it:) I often find myself explaining all or part of her story to various people (anyone and everyone who will listen! LOL), so I think I'll just start handing them the card....just my way of spreading the word. You can check out her site at www.strengthofspirit.weebly.com I think it has helped inform people, although not everyone gets it still. Plenty of people ask me " How's Makenna feeling? Is she better? " I just smile and say " She's doing good, thanks. I've posted some updates on her website, I gave that to you, right?... " Maybe the 900th time they look at it, they will understand. Amy, mom to Makenna (2 1/2). 1 week left in 1st cast!!! > > > > Subject: Too sensitive?? > To: infantile_scoliosis > Date: Thursday, January 21, 2010, 5:55 PM > > >  > > > > > > My SIL referred to Hayden's cast change as a " checkup " and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is " no big deal " .... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... >  Joan > mom to Hayden 3 > 43 degrees down from 62 > Cast number 3 > Treated at ish Rite Hospital > Dallas, TX > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Joan, Along the same lines as what Chrissy suggessted...when Makenna was first diagnosed and the rug was pulled from under our feet, I started a website with a blog to keep family members and friends updated. I just couldn't keep telling the story over and over, it was all too fresh. The website allows me to have all the information in one place, the blog allows me to give updates as we go, I have pictures of Makenna in the cast, and I have a links page so that people can find out more on their own. I haven't done it yet, but I am going to print out business cards for Makenna that have her website on it:) I often find myself explaining all or part of her story to various people (anyone and everyone who will listen! LOL), so I think I'll just start handing them the card....just my way of spreading the word. You can check out her site at www.strengthofspirit.weebly.com I think it has helped inform people, although not everyone gets it still. Plenty of people ask me " How's Makenna feeling? Is she better? " I just smile and say " She's doing good, thanks. I've posted some updates on her website, I gave that to you, right?... " Maybe the 900th time they look at it, they will understand. Amy, mom to Makenna (2 1/2). 1 week left in 1st cast!!! > > > > Subject: Too sensitive?? > To: infantile_scoliosis > Date: Thursday, January 21, 2010, 5:55 PM > > >  > > > > > > My SIL referred to Hayden's cast change as a " checkup " and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is " no big deal " .... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... >  Joan > mom to Hayden 3 > 43 degrees down from 62 > Cast number 3 > Treated at ish Rite Hospital > Dallas, TX > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Joan, Along the same lines as what Chrissy suggessted...when Makenna was first diagnosed and the rug was pulled from under our feet, I started a website with a blog to keep family members and friends updated. I just couldn't keep telling the story over and over, it was all too fresh. The website allows me to have all the information in one place, the blog allows me to give updates as we go, I have pictures of Makenna in the cast, and I have a links page so that people can find out more on their own. I haven't done it yet, but I am going to print out business cards for Makenna that have her website on it:) I often find myself explaining all or part of her story to various people (anyone and everyone who will listen! LOL), so I think I'll just start handing them the card....just my way of spreading the word. You can check out her site at www.strengthofspirit.weebly.com I think it has helped inform people, although not everyone gets it still. Plenty of people ask me " How's Makenna feeling? Is she better? " I just smile and say " She's doing good, thanks. I've posted some updates on her website, I gave that to you, right?... " Maybe the 900th time they look at it, they will understand. Amy, mom to Makenna (2 1/2). 1 week left in 1st cast!!! > > > > Subject: Too sensitive?? > To: infantile_scoliosis > Date: Thursday, January 21, 2010, 5:55 PM > > >  > > > > > > My SIL referred to Hayden's cast change as a " checkup " and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is " no big deal " .... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me..... >  Joan > mom to Hayden 3 > 43 degrees down from 62 > Cast number 3 > Treated at ish Rite Hospital > Dallas, TX > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 That is a wonderful idea, to chronicle Londynn's journey and to get the word out! Fantastic. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23) To: infantile_scoliosis Sent: Thu, January 21, 2010 7:24:37 PMSubject: Re: Too sensitive?? My daughter called SLC to ask if we could video Londynn's first casting - they said we couldn't but she thought someone else - non family member could - We are going to take our video camera just in case as well as our digital - we are hoping to chronical her steps thru this journey and hopefully get our local tv stations to run our story and possibly the PSA (if allowed). I know we haven't been in the trenches like you guys have - we will only be getting our first cast in a few weeks - but I have found that the more I speak about Londynn's situation, what the doctors expect, what we expect, etc - that people are more sensitive to the situation. When I sent everyone the Extraordinary Measures link - the responses I got were - "I had no idea how serious this disease was - I'm so glad that you found out about this procedure" > > > >From: Joan Vallee <hayro1611yahoo (DOT) com>> >Subject: [infantile_scoliosi s] Too sensitive??> >To: infantile_scoliosis @yahoogroups. com> >Date: Thursday, January 21, 2010, 5:55 PM> >> >> > > >My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal"..... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me.....> > Joan> >mom to Hayden 3> >43 degrees down from 62> >Cast number 3> >Treated at ish Rite Hospital > >Dallas, TX > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 That is a wonderful idea, to chronicle Londynn's journey and to get the word out! Fantastic. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23) To: infantile_scoliosis Sent: Thu, January 21, 2010 7:24:37 PMSubject: Re: Too sensitive?? My daughter called SLC to ask if we could video Londynn's first casting - they said we couldn't but she thought someone else - non family member could - We are going to take our video camera just in case as well as our digital - we are hoping to chronical her steps thru this journey and hopefully get our local tv stations to run our story and possibly the PSA (if allowed). I know we haven't been in the trenches like you guys have - we will only be getting our first cast in a few weeks - but I have found that the more I speak about Londynn's situation, what the doctors expect, what we expect, etc - that people are more sensitive to the situation. When I sent everyone the Extraordinary Measures link - the responses I got were - "I had no idea how serious this disease was - I'm so glad that you found out about this procedure" > > > >From: Joan Vallee <hayro1611yahoo (DOT) com>> >Subject: [infantile_scoliosi s] Too sensitive??> >To: infantile_scoliosis @yahoogroups. com> >Date: Thursday, January 21, 2010, 5:55 PM> >> >> > > >My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal"..... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me.....> > Joan> >mom to Hayden 3> >43 degrees down from 62> >Cast number 3> >Treated at ish Rite Hospital > >Dallas, TX > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 That is a wonderful idea, to chronicle Londynn's journey and to get the word out! Fantastic. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23) To: infantile_scoliosis Sent: Thu, January 21, 2010 7:24:37 PMSubject: Re: Too sensitive?? My daughter called SLC to ask if we could video Londynn's first casting - they said we couldn't but she thought someone else - non family member could - We are going to take our video camera just in case as well as our digital - we are hoping to chronical her steps thru this journey and hopefully get our local tv stations to run our story and possibly the PSA (if allowed). I know we haven't been in the trenches like you guys have - we will only be getting our first cast in a few weeks - but I have found that the more I speak about Londynn's situation, what the doctors expect, what we expect, etc - that people are more sensitive to the situation. When I sent everyone the Extraordinary Measures link - the responses I got were - "I had no idea how serious this disease was - I'm so glad that you found out about this procedure" > > > >From: Joan Vallee <hayro1611yahoo (DOT) com>> >Subject: [infantile_scoliosi s] Too sensitive??> >To: infantile_scoliosis @yahoogroups. com> >Date: Thursday, January 21, 2010, 5:55 PM> >> >> > > >My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal"..... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me.....> > Joan> >mom to Hayden 3> >43 degrees down from 62> >Cast number 3> >Treated at ish Rite Hospital > >Dallas, TX > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 You are a great mom Amy. It is frustrating when you have to explain over and over to the same people, but then again, I LOVE talking about my sweet boy. My MIL still calls his cast a "brace". I tell her "its a cast, it does NOT come off". Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX To: infantile_scoliosis Sent: Thu, January 21, 2010 9:44:52 PMSubject: Re: Too sensitive?? Joan,Along the same lines as what Chrissy suggessted.. .when Makenna was first diagnosed and the rug was pulled from under our feet, I started a website with a blog to keep family members and friends updated. I just couldn't keep telling the story over and over, it was all too fresh. The website allows me to have all the information in one place, the blog allows me to give updates as we go, I have pictures of Makenna in the cast, and I have a links page so that people can find out more on their own. I haven't done it yet, but I am going to print out business cards for Makenna that have her website on it:) I often find myself explaining all or part of her story to various people (anyone and everyone who will listen! LOL), so I think I'll just start handing them the card.....just my way of spreading the word.You can check out her site at www.strengthofspiri t.weebly. com I think it has helped inform people, although not everyone gets it still. Plenty of people ask me "How's Makenna feeling? Is she better?" I just smile and say "She's doing good, thanks. I've posted some updates on her website, I gave that to you, right?..." Maybe the 900th time they look at it, they will understand.Amy, mom to Makenna (2 1/2). 1 week left in 1st cast!!!> > > From: Joan Vallee <hayro1611@. ..>> Subject: [infantile_scoliosi s] Too sensitive??> To: infantile_scoliosis @yahoogroups. com> Date: Thursday, January 21, 2010, 5:55 PM> > >  > > > > > > My SIL referred to Hayden's cast change as a "checkup" and so I sent her an email correcting her and telling her that many people make light of Hayden's situation. Should I have kept my mouth shut?? I don't want to be mean to people, but I can't stand when people act like Scoliosis is "no big deal".... Putting your child under anesthesia every 2 months and manipulating his spine and not being able to bathe is a BIG deal to me.....>  Joan> mom to Hayden 3> 43 degrees down from 62> Cast number 3> Treated at ish Rite Hospital > Dallas, TX> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.