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...
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...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 What is caring bridge and tasha what's is ryans webpage.  It wouldvbe interesting to see those pics Sent from my iPod  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 <christenandpooks42sbcglobal (DOT) net>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 caringbridge is a free website designed to keep family/friends updated on your sick one. you can add pics and updates. i think you can find it a caringbridge.org melissa 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 and his brother's webpage is private, but you can see those OR pictures here on the group. In the photos section look for .The boys' webpage is through Shutterfly. I have been a member for a while now. Not sure if they still offer the webpages or shared sites is what I think they call it. Let me know if you can't find the pictures in the OR. I'll try to guide you. 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: "112005@..." To: "infantile_scoliosis " <infantile_scoliosis >Sent: Fri, January 22, 2010 11:01:04 AMSubject: Re: Too sensitive?? What is caring bridge and tasha what's is ryans webpage. It wouldvbe interesting to see those pics Sent from my iPodOn Jan 21, 2010, at 7:57 PM, Tasha Fontenot <ryanswalkyahoo (DOT) com> wrote: 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. htmlFrom: 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 Amy the link you posted is not a full link just so you knowSent from my iPod  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 Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod  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) From: jckzmckinney <clmckinneyokcps (DOT) org>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 Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod  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) From: jckzmckinney <clmckinneyokcps (DOT) org>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 Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod  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) From: jckzmckinney <clmckinneyokcps (DOT) org>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 Oh, to take pictures in the casting room? We asked about it, I don't think they want the parent to do it- probably because it could be more emotional than they think? They might be willing to take a couple for you if you ask. Mike Pond is a good person to ask, the PA. He's been very involved with the program from the beginning. 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 " <infantile_scoliosis >Sent: Fri, January 22, 2010 9:15:06 AMSubject: Re: Re: Too sensitive?? Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod On Jan 21, 2010, at 8:54 PM, NIck Guthe <nickgutheyahoo (DOT) com> wrote: 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) From: jckzmckinney <clmckinneyokcps (DOT) org>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:24:37 PMSubject: [infantile_scoliosi s] 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 Oh, to take pictures in the casting room? We asked about it, I don't think they want the parent to do it- probably because it could be more emotional than they think? They might be willing to take a couple for you if you ask. Mike Pond is a good person to ask, the PA. He's been very involved with the program from the beginning. 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 " <infantile_scoliosis >Sent: Fri, January 22, 2010 9:15:06 AMSubject: Re: Re: Too sensitive?? Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod On Jan 21, 2010, at 8:54 PM, NIck Guthe <nickgutheyahoo (DOT) com> wrote: 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) From: jckzmckinney <clmckinneyokcps (DOT) org>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:24:37 PMSubject: [infantile_scoliosi s] 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 Oh, to take pictures in the casting room? We asked about it, I don't think they want the parent to do it- probably because it could be more emotional than they think? They might be willing to take a couple for you if you ask. Mike Pond is a good person to ask, the PA. He's been very involved with the program from the beginning. 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 " <infantile_scoliosis >Sent: Fri, January 22, 2010 9:15:06 AMSubject: Re: Re: Too sensitive?? Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod On Jan 21, 2010, at 8:54 PM, NIck Guthe <nickgutheyahoo (DOT) com> wrote: 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) From: jckzmckinney <clmckinneyokcps (DOT) org>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:24:37 PMSubject: [infantile_scoliosi s] 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 I'm not sure, but I do know based on malpractice suits and whatnot, most hospital's will not allow video taping or still pictures to be taken during most procedures, sadly this now includes births of babies as well. I was even surprise that various ones here have said they are allowed in the OR or in during an MRI at all. I am only allowed as far as the holding room or for an MRI, the pre-op/post-op areas. Jane To: infantile_scoliosis Sent: Fri, January 22, 2010 9:36:56 AMSubject: Re: Re: Too sensitive?? Oh, to take pictures in the casting room? We asked about it, I don't think they want the parent to do it- probably because it could be more emotional than they think? They might be willing to take a couple for you if you ask. Mike Pond is a good person to ask, the PA. He's been very involved with the program from the beginning. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23) From: "112005@ yahoo.com" <johnson112005@ yahoo.com>To: "infantile_scoliosi syahoogroups (DOT) com" <infantile_scoliosis @yahoogroups. com>Sent: Fri, January 22, 2010 9:15:06 AMSubject: Re: [infantile_scoliosi s] Re: Too sensitive?? Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod On Jan 21, 2010, at 8:54 PM, NIck Guthe <nickgutheyahoo (DOT) com> wrote: 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) From: jckzmckinney <clmckinneyokcps (DOT) org>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:24:37 PMSubject: [infantile_scoliosi s] 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 I'm not sure, but I do know based on malpractice suits and whatnot, most hospital's will not allow video taping or still pictures to be taken during most procedures, sadly this now includes births of babies as well. I was even surprise that various ones here have said they are allowed in the OR or in during an MRI at all. I am only allowed as far as the holding room or for an MRI, the pre-op/post-op areas. Jane To: infantile_scoliosis Sent: Fri, January 22, 2010 9:36:56 AMSubject: Re: Re: Too sensitive?? Oh, to take pictures in the casting room? We asked about it, I don't think they want the parent to do it- probably because it could be more emotional than they think? They might be willing to take a couple for you if you ask. Mike Pond is a good person to ask, the PA. He's been very involved with the program from the beginning. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23) From: "112005@ yahoo.com" <johnson112005@ yahoo.com>To: "infantile_scoliosi syahoogroups (DOT) com" <infantile_scoliosis @yahoogroups. com>Sent: Fri, January 22, 2010 9:15:06 AMSubject: Re: [infantile_scoliosi s] Re: Too sensitive?? Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod On Jan 21, 2010, at 8:54 PM, NIck Guthe <nickgutheyahoo (DOT) com> wrote: 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) From: jckzmckinney <clmckinneyokcps (DOT) org>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:24:37 PMSubject: [infantile_scoliosi s] 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 I'm not sure, but I do know based on malpractice suits and whatnot, most hospital's will not allow video taping or still pictures to be taken during most procedures, sadly this now includes births of babies as well. I was even surprise that various ones here have said they are allowed in the OR or in during an MRI at all. I am only allowed as far as the holding room or for an MRI, the pre-op/post-op areas. Jane To: infantile_scoliosis Sent: Fri, January 22, 2010 9:36:56 AMSubject: Re: Re: Too sensitive?? Oh, to take pictures in the casting room? We asked about it, I don't think they want the parent to do it- probably because it could be more emotional than they think? They might be willing to take a couple for you if you ask. Mike Pond is a good person to ask, the PA. He's been very involved with the program from the beginning. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23) From: "112005@ yahoo.com" <johnson112005@ yahoo.com>To: "infantile_scoliosi syahoogroups (DOT) com" <infantile_scoliosis @yahoogroups. com>Sent: Fri, January 22, 2010 9:15:06 AMSubject: Re: [infantile_scoliosi s] Re: Too sensitive?? Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod On Jan 21, 2010, at 8:54 PM, NIck Guthe <nickgutheyahoo (DOT) com> wrote: 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) From: jckzmckinney <clmckinneyokcps (DOT) org>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:24:37 PMSubject: [infantile_scoliosi s] 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 ThanksSent from my iPod  caringbridge is a free website designed to keep family/friends updated on your sick one. you can add pics and updates. i think you can find it a caringbridge.org  melissa 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 ThanksSent from my iPod  caringbridge is a free website designed to keep family/friends updated on your sick one. you can add pics and updates. i think you can find it a caringbridge.org  melissa 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 I would love to see them we are getting our first cast on fenSent from my iPod  and his brother's webpage is private, but you can see those OR pictures here on the group. In the photos section look for .The boys' webpage is through Shutterfly. I have been a member for a while now. Not sure if they still offer the webpages or shared sites is what I think they call it. Let me know if you can't find the pictures in the OR. I'll try to guide you. 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: "112005" <johnson112005>To: "infantile_scoliosis " <infantile_scoliosis >Sent: Fri, January 22, 2010 11:01:04 AMSubject: Re: Too sensitive??  What is caring bridge and tasha what's is ryans webpage.  It wouldvbe interesting to see those pics Sent from my iPodOn Jan 21, 2010, at 7:57 PM, Tasha Fontenot <ryanswalkyahoo (DOT) com> wrote:  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. htmlFrom: 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 Thanks I would love to see them we are getting our first cast on fenSent from my iPod  and his brother's webpage is private, but you can see those OR pictures here on the group. In the photos section look for .The boys' webpage is through Shutterfly. I have been a member for a while now. Not sure if they still offer the webpages or shared sites is what I think they call it. Let me know if you can't find the pictures in the OR. I'll try to guide you. 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: "112005" <johnson112005>To: "infantile_scoliosis " <infantile_scoliosis >Sent: Fri, January 22, 2010 11:01:04 AMSubject: Re: Too sensitive??  What is caring bridge and tasha what's is ryans webpage.  It wouldvbe interesting to see those pics Sent from my iPodOn Jan 21, 2010, at 7:57 PM, Tasha Fontenot <ryanswalkyahoo (DOT) com> wrote:  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. htmlFrom: 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 Thanks I would love to see them we are getting our first cast on fenSent from my iPod  and his brother's webpage is private, but you can see those OR pictures here on the group. In the photos section look for .The boys' webpage is through Shutterfly. I have been a member for a while now. Not sure if they still offer the webpages or shared sites is what I think they call it. Let me know if you can't find the pictures in the OR. I'll try to guide you. 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: "112005" <johnson112005>To: "infantile_scoliosis " <infantile_scoliosis >Sent: Fri, January 22, 2010 11:01:04 AMSubject: Re: Too sensitive??  What is caring bridge and tasha what's is ryans webpage.  It wouldvbe interesting to see those pics Sent from my iPodOn Jan 21, 2010, at 7:57 PM, Tasha Fontenot <ryanswalkyahoo (DOT) com> wrote:  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. htmlFrom: 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 That was who we met with ok our last app I really like jim he is a good guySent from my iPod  Oh, to take pictures in the casting room? We asked about it, I don't think they want the parent to do it- probably because it could be more emotional than they think? They might be willing to take a couple for you if you ask. Mike Pond is a good person to ask, the PA. He's been very involved with the program from the beginning. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23) From: "112005" <johnson112005>To: "infantile_scoliosis " <infantile_scoliosis >Sent: Fri, January 22, 2010 9:15:06 AMSubject: Re: Re: Too sensitive?? Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod On Jan 21, 2010, at 8:54 PM, NIck Guthe <nickgutheyahoo (DOT) com> wrote:  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) From: jckzmckinney <clmckinneyokcps (DOT) org>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:24:37 PMSubject: [infantile_scoliosi s] 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 was who we met with ok our last app I really like jim he is a good guySent from my iPod  Oh, to take pictures in the casting room? We asked about it, I don't think they want the parent to do it- probably because it could be more emotional than they think? They might be willing to take a couple for you if you ask. Mike Pond is a good person to ask, the PA. He's been very involved with the program from the beginning. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23) From: "112005" <johnson112005>To: "infantile_scoliosis " <infantile_scoliosis >Sent: Fri, January 22, 2010 9:15:06 AMSubject: Re: Re: Too sensitive?? Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod On Jan 21, 2010, at 8:54 PM, NIck Guthe <nickgutheyahoo (DOT) com> wrote:  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) From: jckzmckinney <clmckinneyokcps (DOT) org>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:24:37 PMSubject: [infantile_scoliosi s] 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 was who we met with ok our last app I really like jim he is a good guySent from my iPod  Oh, to take pictures in the casting room? We asked about it, I don't think they want the parent to do it- probably because it could be more emotional than they think? They might be willing to take a couple for you if you ask. Mike Pond is a good person to ask, the PA. He's been very involved with the program from the beginning. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23) From: "112005" <johnson112005>To: "infantile_scoliosis " <infantile_scoliosis >Sent: Fri, January 22, 2010 9:15:06 AMSubject: Re: Re: Too sensitive?? Heidi have you or anyone else that goes to slc ever asked them to yaks picsSent from my iPod On Jan 21, 2010, at 8:54 PM, NIck Guthe <nickgutheyahoo (DOT) com> wrote:  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) From: jckzmckinney <clmckinneyokcps (DOT) org>To: infantile_scoliosis @yahoogroups. comSent: Thu, January 21, 2010 7:24:37 PMSubject: [infantile_scoliosi s] 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 Oh Joan, I totally feel you!! I don't know how many people have said to me " oh well you can take it off to him a break right" I feel like screaming IT'S A CAST YOU IDIOT!!! HOW DO YOU SUPPOSE WE CAN TAKE IT OFF!!!!!!! People also say to me "so when does he get a new "brace"? Again I feel like screaming. And when I correct them and say its not a brace its a cast he has to be put under they always reply with "Oh my God they put him to sleep!" Anyway I guess I shouldnt freak out so much, I know its just a matter of people not understanding but I get soooo tired of having to constantly explain it people (relatives too)! Lynn Subject: Too sensitive??To: infantile_scoliosis Received: Thursday, January 21, 2010, 3:55 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 Make your browsing faster, safer, and easier with the new Internet Explorer® 8. Optimized for Yahoo! Get it Now for Free! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Oh Joan, I totally feel you!! I don't know how many people have said to me " oh well you can take it off to him a break right" I feel like screaming IT'S A CAST YOU IDIOT!!! HOW DO YOU SUPPOSE WE CAN TAKE IT OFF!!!!!!! People also say to me "so when does he get a new "brace"? Again I feel like screaming. And when I correct them and say its not a brace its a cast he has to be put under they always reply with "Oh my God they put him to sleep!" Anyway I guess I shouldnt freak out so much, I know its just a matter of people not understanding but I get soooo tired of having to constantly explain it people (relatives too)! Lynn Subject: Too sensitive??To: infantile_scoliosis Received: Thursday, January 21, 2010, 3:55 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 Make your browsing faster, safer, and easier with the new Internet Explorer® 8. Optimized for Yahoo! Get it Now for Free! Quote Link to comment Share on other sites More sharing options...
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