Re: I am a wreck-sorry to rant~Heidi

[Guest guest]

,

I am feeling better today. To be honest, I am a little confused about the rotation concept, but Dr. D. did show me on the X-ray that the vertebrae sort of disappears when it is rotated- out of the picture, so to speak. Layman's description. I'd have to see the X-rays again and compare to see if that improved, but I know they are always working on it.

I'm going with the concept that the lower spine looked much better, and now the upper curve can straighten- but I am trying to prepare myself that we could stay at the same number for 2-3 casts, as other children have. Noah is an inspiration to us, I talk about him often to Nick!

I know, I had always heard idiopathic (maybe just from the early orthos we saw), this was the first time I heard that or really registered it.Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Thu, December 17, 2009 11:53:04 AMSubject: Re: I am a wreck-sorry to rant~Heidi

Heidi~

Interesting that Dr D refers to it as neurological scoli, I have never heard that regarding Noah.

My question to you is how is Bexons rotation? In speaking to my husband this morning about you guys, he remembered that the one cast that we did not get correction( in fact, lost correction) on was one that they specifically went for rotation. Noah had bad rotation and I remember the Xrays after that cast and the (peticals?, whatever they call them) looked great. Is it possible that this is the case for Bex also? If I remember correctly it was around the 5th or 6th cast.

Anyways, just my thoughts. I hope your feeling better today.

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] I am a wreck- sorry to rantTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 16, 2009, 4:50 PM

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)

[Guest guest]

,

I am feeling better today. To be honest, I am a little confused about the rotation concept, but Dr. D. did show me on the X-ray that the vertebrae sort of disappears when it is rotated- out of the picture, so to speak. Layman's description. I'd have to see the X-rays again and compare to see if that improved, but I know they are always working on it.

I'm going with the concept that the lower spine looked much better, and now the upper curve can straighten- but I am trying to prepare myself that we could stay at the same number for 2-3 casts, as other children have. Noah is an inspiration to us, I talk about him often to Nick!

I know, I had always heard idiopathic (maybe just from the early orthos we saw), this was the first time I heard that or really registered it.Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Thu, December 17, 2009 11:53:04 AMSubject: Re: I am a wreck-sorry to rant~Heidi

Heidi~

Interesting that Dr D refers to it as neurological scoli, I have never heard that regarding Noah.

My question to you is how is Bexons rotation? In speaking to my husband this morning about you guys, he remembered that the one cast that we did not get correction( in fact, lost correction) on was one that they specifically went for rotation. Noah had bad rotation and I remember the Xrays after that cast and the (peticals?, whatever they call them) looked great. Is it possible that this is the case for Bex also? If I remember correctly it was around the 5th or 6th cast.

Anyways, just my thoughts. I hope your feeling better today.

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] I am a wreck- sorry to rantTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 16, 2009, 4:50 PM

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)

[Guest guest]

,

I hope I didn't scare you. I know from this group that this can be a journey with up and downs, and it is such a blessing to have a safe place to really share your low feelings! The week before the first cast and the first casting day really are the hardest- truly, we have had easier ones each time, this was just what felt like a setback. I am not depressed today, I am thinking to the future and WILL enjoy the holidays. We are all stronger together. You and Drue will do great.

By the way, I think this is a really rough time of year to be dealing with this, you are a strong mommy and you are doing the very best thing for your child!Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Thu, December 17, 2009 12:12:19 PMSubject: Re: I am a wreck-sorry to rant~Heidi

Heidi,

I am new to the group, and Drue gets his first cast next week. I am terrified, worried, and sad. I don't have any advice to give except to keep praying. You, your baby, and family will make it through. Try to enjoy the holidays. You are a strong mommy. and JimmyMommy and daddy to Tryston, 4, Drue, 13 monthsDrue's first cast Dec. 22St. Louis Children's Hospital

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] I am a wreck- sorry to rantTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 16, 2009, 4:50 PM

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)

[Guest guest]

,

I hope I didn't scare you. I know from this group that this can be a journey with up and downs, and it is such a blessing to have a safe place to really share your low feelings! The week before the first cast and the first casting day really are the hardest- truly, we have had easier ones each time, this was just what felt like a setback. I am not depressed today, I am thinking to the future and WILL enjoy the holidays. We are all stronger together. You and Drue will do great.

By the way, I think this is a really rough time of year to be dealing with this, you are a strong mommy and you are doing the very best thing for your child!Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Thu, December 17, 2009 12:12:19 PMSubject: Re: I am a wreck-sorry to rant~Heidi

Heidi,

I am new to the group, and Drue gets his first cast next week. I am terrified, worried, and sad. I don't have any advice to give except to keep praying. You, your baby, and family will make it through. Try to enjoy the holidays. You are a strong mommy. and JimmyMommy and daddy to Tryston, 4, Drue, 13 monthsDrue's first cast Dec. 22St. Louis Children's Hospital

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] I am a wreck- sorry to rantTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 16, 2009, 4:50 PM

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)

[Guest guest]

Heidi,Next time you are in SLC, ask for a CD of Bex's xrays. You can then take them home and look at them. This has really helped me see Keira's progress. We ask for a cd at the end of every visit. (Plus I send the CD to her ortho at UCSF, just to show him our progress!!) You can also call Angie and ask her to send you a copy in the mail.We talked with Mike for a good time yesterday. (Our doctor was operating at Primary yesterday.) He discussed how this condition is multi-faceted. I believe that Keira's spine was stuck at 40* since they were working on the rotation. Now that the rotation is greatly improved the spine is starting to move. So, we have moved from correcting rotation to the curve and after that they are going to work on her rib cage symmetry. I made the joke to Mike, "Well, as long as we are finished with treatment by the

time she wants to have children!!"Another thing I do is I always take a photo of Keira right after they remove the cast. Front and back, I then go back and look at those photos when I am feeling frustrated. Those photos show me the progress we are making. Hang in there!Liz, Mom to Keira - 3.5 yrs in 6th cast in SLC

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] I am a wreck- sorry to rantTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 16, 2009, 4:50 PM

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)

[Guest guest]

GREAT idea Liz!!'s doc is NOT big on numbers, but overall body shape, form, etc. When showing us 's current xray he always goes back to the first one or first couple to show us the progress he()has made.And ish Rite does CDs so I do have that at home to refer to as well. 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: clay morrison To: infantile_scoliosis Sent: Sat, December 19, 2009 3:46:47 PMSubject: Re: I am a wreck-sorry to rant~Heidi

Heidi,Next time you are in SLC, ask for a CD of Bex's xrays. You can then take them home and look at them. This has really helped me see Keira's progress. We ask for a cd at the end of every visit. (Plus I send the CD to her ortho at UCSF, just to show him our progress!!) You can also call Angie and ask her to send you a copy in the mail.We talked with Mike for a good time yesterday. (Our doctor was operating at Primary yesterday.) He discussed how this condition is multi-faceted. I believe that Keira's spine was stuck at 40* since they were working on the rotation. Now that the rotation is greatly improved the spine is starting to move.

So, we have moved from correcting rotation to the curve and after that they are going to work on her rib cage symmetry. I made the joke to Mike, "Well, as long as we are finished with treatment by the

time she wants to have children!!"Another thing I do is I always take a photo of Keira right after they remove the cast. Front and back, I then go back and look at those photos when I am feeling frustrated. Those photos show me the progress we are making. Hang in there!Liz, Mom to Keira - 3.5 yrs in 6th cast in SLC

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] I am a wreck- sorry to rantTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 16, 2009, 4:50 PM

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)

[Guest guest]

GREAT idea Liz!!'s doc is NOT big on numbers, but overall body shape, form, etc. When showing us 's current xray he always goes back to the first one or first couple to show us the progress he()has made.And ish Rite does CDs so I do have that at home to refer to as well. 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: clay morrison To: infantile_scoliosis Sent: Sat, December 19, 2009 3:46:47 PMSubject: Re: I am a wreck-sorry to rant~Heidi

Heidi,Next time you are in SLC, ask for a CD of Bex's xrays. You can then take them home and look at them. This has really helped me see Keira's progress. We ask for a cd at the end of every visit. (Plus I send the CD to her ortho at UCSF, just to show him our progress!!) You can also call Angie and ask her to send you a copy in the mail.We talked with Mike for a good time yesterday. (Our doctor was operating at Primary yesterday.) He discussed how this condition is multi-faceted. I believe that Keira's spine was stuck at 40* since they were working on the rotation. Now that the rotation is greatly improved the spine is starting to move.

So, we have moved from correcting rotation to the curve and after that they are going to work on her rib cage symmetry. I made the joke to Mike, "Well, as long as we are finished with treatment by the

time she wants to have children!!"Another thing I do is I always take a photo of Keira right after they remove the cast. Front and back, I then go back and look at those photos when I am feeling frustrated. Those photos show me the progress we are making. Hang in there!Liz, Mom to Keira - 3.5 yrs in 6th cast in SLC

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] I am a wreck- sorry to rantTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 16, 2009, 4:50 PM

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)

[Guest guest]

GREAT idea Liz!!'s doc is NOT big on numbers, but overall body shape, form, etc. When showing us 's current xray he always goes back to the first one or first couple to show us the progress he()has made.And ish Rite does CDs so I do have that at home to refer to as well. 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: clay morrison To: infantile_scoliosis Sent: Sat, December 19, 2009 3:46:47 PMSubject: Re: I am a wreck-sorry to rant~Heidi

Heidi,Next time you are in SLC, ask for a CD of Bex's xrays. You can then take them home and look at them. This has really helped me see Keira's progress. We ask for a cd at the end of every visit. (Plus I send the CD to her ortho at UCSF, just to show him our progress!!) You can also call Angie and ask her to send you a copy in the mail.We talked with Mike for a good time yesterday. (Our doctor was operating at Primary yesterday.) He discussed how this condition is multi-faceted. I believe that Keira's spine was stuck at 40* since they were working on the rotation. Now that the rotation is greatly improved the spine is starting to move.

So, we have moved from correcting rotation to the curve and after that they are going to work on her rib cage symmetry. I made the joke to Mike, "Well, as long as we are finished with treatment by the

time she wants to have children!!"Another thing I do is I always take a photo of Keira right after they remove the cast. Front and back, I then go back and look at those photos when I am feeling frustrated. Those photos show me the progress we are making. Hang in there!Liz, Mom to Keira - 3.5 yrs in 6th cast in SLC

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] I am a wreck- sorry to rantTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 16, 2009, 4:50 PM

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)

[Guest guest]

Liz,

Keira's progress is very encouraging. We always look at the X-rays there, but you're right, we should take them home. We do take photos out of cast front and back, this time they looked pretty close to last time to the naked eye, but I'm going to go back and compare. That is good advice, thank you! Heidi, Bexon's Mama, (2 and a half years old, in 5th cast from Salt Lake City Shriners, now down from 61 to 22.9 degrees)

To: infantile_scoliosis Sent: Sat, December 19, 2009 1:46:47 PMSubject: Re: I am a wreck-sorry to rant~Heidi

Heidi,Next time you are in SLC, ask for a CD of Bex's xrays. You can then take them home and look at them. This has really helped me see Keira's progress. We ask for a cd at the end of every visit. (Plus I send the CD to her ortho at UCSF, just to show him our progress!!) You can also call Angie and ask her to send you a copy in the mail.We talked with Mike for a good time yesterday. (Our doctor was operating at Primary yesterday.) He discussed how this condition is multi-faceted. I believe that Keira's spine was stuck at 40* since they were working on the rotation. Now that the rotation is greatly improved the spine is starting to move. So, we have moved from correcting rotation to the curve and after that they are going to work on her rib cage symmetry. I made the joke to Mike, "Well, as long as we are finished with treatment by the time she wants to have children!!"Another thing I do is I always take a

photo of Keira right after they remove the cast. Front and back, I then go back and look at those photos when I am feeling frustrated. Those photos show me the progress we are making. Hang in there!Liz, Mom to Keira - 3.5 yrs in 6th cast in SLC

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] I am a wreck- sorry to rantTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 16, 2009, 4:50 PM

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)