Re: I am a wreck- sorry to rant

[Guest guest]

Heidi, It is all still fresh right now and you were not expecting this news. You have every right to feel this way you are feeling right now.I can really relate to you because of 's treatment or the lack there of.......meaning the improvement in his spine.Sometimes these little spines are not meant to improve like others. For whatever reason God has I have come to terms with that.It was not and is not easy. I second guess his whole treatment, but at some point I had to stop the grieving and move on and be thankful and happy for what we had been given. I know you will feel that way too. You need to give yourself some time to process all this. And do it quickly so you CAN have a wonderful time with your family for Christmas.I'm here for

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: NIck Guthe To: infantile_scoliosis Sent: Wed, December

16, 2009 5:50:28 PMSubject: I am a wreck- sorry to rant

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, It is all still fresh right now and you were not expecting this news. You have every right to feel this way you are feeling right now.I can really relate to you because of 's treatment or the lack there of.......meaning the improvement in his spine.Sometimes these little spines are not meant to improve like others. For whatever reason God has I have come to terms with that.It was not and is not easy. I second guess his whole treatment, but at some point I had to stop the grieving and move on and be thankful and happy for what we had been given. I know you will feel that way too. You need to give yourself some time to process all this. And do it quickly so you CAN have a wonderful time with your family for Christmas.I'm here for

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: NIck Guthe To: infantile_scoliosis Sent: Wed, December

16, 2009 5:50:28 PMSubject: I am a wreck- sorry to rant

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]

Oh Heidi,

Im so so very sorry. And dont you feel like for one minute apologizing to ANYONE about being upset/mad as hell/ confused, etc, etc!! I am crying for you right now. You are such a strong person and you have held so many of us up i just wish i could make it all better for you. Bex is one strong boy and he will handle this better than you will and you know this!!

Its going to be ok. Its going to be ok. Really it will. I know it doesnt seem like it now and you feel like you are in a dark tunnel alone and scared but you are NOT alone in this. We all love you, support you and care about you. We are all here for you.

Just go ahead and allow yourself to grieve for your sweet boy. You deserve to do this for your health. You MUST do this for your health. No one can be strong all the time. Lean on us. Thats why were here. Im so sorry Heidi. Please let me know if i can help you. You can call me scream, cry rage, whatever you need. You, Nick and Bex will get thru this and will be stronger for it.

Love to the 3 of you,

Subject: I am a wreck- sorry to rantTo: infantile_scoliosis Date: Wednesday, December 16, 2009, 5:50 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]

Oh Heidi,

Im so so very sorry. And dont you feel like for one minute apologizing to ANYONE about being upset/mad as hell/ confused, etc, etc!! I am crying for you right now. You are such a strong person and you have held so many of us up i just wish i could make it all better for you. Bex is one strong boy and he will handle this better than you will and you know this!!

Its going to be ok. Its going to be ok. Really it will. I know it doesnt seem like it now and you feel like you are in a dark tunnel alone and scared but you are NOT alone in this. We all love you, support you and care about you. We are all here for you.

Just go ahead and allow yourself to grieve for your sweet boy. You deserve to do this for your health. You MUST do this for your health. No one can be strong all the time. Lean on us. Thats why were here. Im so sorry Heidi. Please let me know if i can help you. You can call me scream, cry rage, whatever you need. You, Nick and Bex will get thru this and will be stronger for it.

Love to the 3 of you,

Subject: I am a wreck- sorry to rantTo: infantile_scoliosis Date: Wednesday, December 16, 2009, 5:50 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 so sorry that you did not get the answers you were hoping for.  Ican not imagine how difficult it would be to think about dealing with

a brace until Cole was full grown.  If you need to talk I am almostalways home .  Please know that we are all here for you,especially when family does not understand how difficult PIS can be.Where in NY will you be?  We also live in NY and would love to see you

if you are semi-nearby to give you a big hug!JennMommy to Cole

[Guest guest]

I am so sorry that you did not get the answers you were hoping for.  Ican not imagine how difficult it would be to think about dealing with

a brace until Cole was full grown.  If you need to talk I am almostalways home .  Please know that we are all here for you,especially when family does not understand how difficult PIS can be.Where in NY will you be?  We also live in NY and would love to see you

if you are semi-nearby to give you a big hug!JennMommy to Cole

[Guest guest]

I am so sorry that you did not get the answers you were hoping for.  Ican not imagine how difficult it would be to think about dealing with

a brace until Cole was full grown.  If you need to talk I am almostalways home .  Please know that we are all here for you,especially when family does not understand how difficult PIS can be.Where in NY will you be?  We also live in NY and would love to see you

if you are semi-nearby to give you a big hug!JennMommy to Cole

[Guest guest]

Heidi, Tasha is right...I have been where you are to many times that I would like to admit but I got through it each time...You need time. You will soon learn to accept and move on. All you have to do is look at your Bex... I bet he's as happy and content as it gets.. If he is happy and comfy you must allow yourself the same. He is strong and healthy and happy. That right there is a miracle. He is blessed and so are you.

I hope you find your peace soon my friend!

Connie

I am a wreck- sorry to rant

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, Tasha is right...I have been where you are to many times that I would like to admit but I got through it each time...You need time. You will soon learn to accept and move on. All you have to do is look at your Bex... I bet he's as happy and content as it gets.. If he is happy and comfy you must allow yourself the same. He is strong and healthy and happy. That right there is a miracle. He is blessed and so are you.

I hope you find your peace soon my friend!

Connie

I am a wreck- sorry to rant

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,Lots of deep breaths. Hang in there! Remember, in the grand scheme of life/long term, scoliosis is not what makes your child. He has SO MANY things going for him. Great parents and family who love him and want him to be whatever he wants to be. His life is filled with opportunities and amazing experiences that will help shape him as a person. Scoliosis is only a tiny, minute part of his life. People live very full and active lives with scoliosis, and most people never would know who they are. You have a great young man who will give you the emotional strength to get through this with him. You CAN and WILL do it, and with a positive attitude and the strength he needs from you. I promise. My scoliosis journey with Braydon is different, but, it's the process of the journey that counts

in the end. You have one of the absolute best medical teams on your side for Bex. They will NOT steer you wrong. Sometimes this takes lots of faith and seemingly blind trust. Again, you can do it. More deep breaths. One day you'll look back on Bex's life and have a huge sense of accomplishment at what you both have been through. It will be a good thing.Take care.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96,

3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support grouphttp://health..groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

Heidi,Lots of deep breaths. Hang in there! Remember, in the grand scheme of life/long term, scoliosis is not what makes your child. He has SO MANY things going for him. Great parents and family who love him and want him to be whatever he wants to be. His life is filled with opportunities and amazing experiences that will help shape him as a person. Scoliosis is only a tiny, minute part of his life. People live very full and active lives with scoliosis, and most people never would know who they are. You have a great young man who will give you the emotional strength to get through this with him. You CAN and WILL do it, and with a positive attitude and the strength he needs from you. I promise. My scoliosis journey with Braydon is different, but, it's the process of the journey that counts

in the end. You have one of the absolute best medical teams on your side for Bex. They will NOT steer you wrong. Sometimes this takes lots of faith and seemingly blind trust. Again, you can do it. More deep breaths. One day you'll look back on Bex's life and have a huge sense of accomplishment at what you both have been through. It will be a good thing.Take care.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96,

3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support grouphttp://health..groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

Heidi,Lots of deep breaths. Hang in there! Remember, in the grand scheme of life/long term, scoliosis is not what makes your child. He has SO MANY things going for him. Great parents and family who love him and want him to be whatever he wants to be. His life is filled with opportunities and amazing experiences that will help shape him as a person. Scoliosis is only a tiny, minute part of his life. People live very full and active lives with scoliosis, and most people never would know who they are. You have a great young man who will give you the emotional strength to get through this with him. You CAN and WILL do it, and with a positive attitude and the strength he needs from you. I promise. My scoliosis journey with Braydon is different, but, it's the process of the journey that counts

in the end. You have one of the absolute best medical teams on your side for Bex. They will NOT steer you wrong. Sometimes this takes lots of faith and seemingly blind trust. Again, you can do it. More deep breaths. One day you'll look back on Bex's life and have a huge sense of accomplishment at what you both have been through. It will be a good thing.Take care.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96,

3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support grouphttp://health..groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

,

Oh....I just love you. I absorbed this into my bones, your heart is so giving and kind. Thank you. Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Wed, December 16, 2009 4:05:17 PMSubject: Re: I am a wreck- sorry to rant

Oh Heidi,

Im so so very sorry. And dont you feel like for one minute apologizing to ANYONE about being upset/mad as hell/ confused, etc, etc!! I am crying for you right now. You are such a strong person and you have held so many of us up i just wish i could make it all better for you. Bex is one strong boy and he will handle this better than you will and you know this!!

Its going to be ok. Its going to be ok. Really it will. I know it doesnt seem like it now and you feel like you are in a dark tunnel alone and scared but you are NOT alone in this. We all love you, support you and care about you. We are all here for you.

Just go ahead and allow yourself to grieve for your sweet boy. You deserve to do this for your health. You MUST do this for your health. No one can be strong all the time. Lean on us. Thats why were here. Im so sorry Heidi. Please let me know if i can help you. You can call me scream, cry rage, whatever you need. You, Nick and Bex will get thru this and will be stronger for it.

Love to the 3 of you,

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, 5:50 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]

,

Oh....I just love you. I absorbed this into my bones, your heart is so giving and kind. Thank you. Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Wed, December 16, 2009 4:05:17 PMSubject: Re: I am a wreck- sorry to rant

Oh Heidi,

Im so so very sorry. And dont you feel like for one minute apologizing to ANYONE about being upset/mad as hell/ confused, etc, etc!! I am crying for you right now. You are such a strong person and you have held so many of us up i just wish i could make it all better for you. Bex is one strong boy and he will handle this better than you will and you know this!!

Its going to be ok. Its going to be ok. Really it will. I know it doesnt seem like it now and you feel like you are in a dark tunnel alone and scared but you are NOT alone in this. We all love you, support you and care about you. We are all here for you.

Just go ahead and allow yourself to grieve for your sweet boy. You deserve to do this for your health. You MUST do this for your health. No one can be strong all the time. Lean on us. Thats why were here. Im so sorry Heidi. Please let me know if i can help you. You can call me scream, cry rage, whatever you need. You, Nick and Bex will get thru this and will be stronger for it.

Love to the 3 of you,

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, 5:50 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]

,

Oh....I just love you. I absorbed this into my bones, your heart is so giving and kind. Thank you. Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Wed, December 16, 2009 4:05:17 PMSubject: Re: I am a wreck- sorry to rant

Oh Heidi,

Im so so very sorry. And dont you feel like for one minute apologizing to ANYONE about being upset/mad as hell/ confused, etc, etc!! I am crying for you right now. You are such a strong person and you have held so many of us up i just wish i could make it all better for you. Bex is one strong boy and he will handle this better than you will and you know this!!

Its going to be ok. Its going to be ok. Really it will. I know it doesnt seem like it now and you feel like you are in a dark tunnel alone and scared but you are NOT alone in this. We all love you, support you and care about you. We are all here for you.

Just go ahead and allow yourself to grieve for your sweet boy. You deserve to do this for your health. You MUST do this for your health. No one can be strong all the time. Lean on us. Thats why were here. Im so sorry Heidi. Please let me know if i can help you. You can call me scream, cry rage, whatever you need. You, Nick and Bex will get thru this and will be stronger for it.

Love to the 3 of you,

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, 5:50 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]

Connie, thank you, I admire you so much. Our sweet, funny boys lift our spirits so high, thank God for that! Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Wed, December 16, 2009 4:19:15 PMSubject: Re: I am a wreck- sorry to rant

Heidi, Tasha is right...I have been where you are to many times that I would like to admit but I got through it each time...You need time. You will soon learn to accept and move on. All you have to do is look at your Bex... I bet he's as happy and content as it gets.. If he is happy and comfy you must allow yourself the same. He is strong and healthy and happy. That right there is a miracle. He is blessed and so are you.

I hope you find your peace soon my friend!

Connie

[infantile_scoliosi s] I am a wreck- sorry to rant

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]

Connie, thank you, I admire you so much. Our sweet, funny boys lift our spirits so high, thank God for that! Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Wed, December 16, 2009 4:19:15 PMSubject: Re: I am a wreck- sorry to rant

Heidi, Tasha is right...I have been where you are to many times that I would like to admit but I got through it each time...You need time. You will soon learn to accept and move on. All you have to do is look at your Bex... I bet he's as happy and content as it gets.. If he is happy and comfy you must allow yourself the same. He is strong and healthy and happy. That right there is a miracle. He is blessed and so are you.

I hope you find your peace soon my friend!

Connie

[infantile_scoliosi s] I am a wreck- sorry to rant

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]

Connie, thank you, I admire you so much. Our sweet, funny boys lift our spirits so high, thank God for that! Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Wed, December 16, 2009 4:19:15 PMSubject: Re: I am a wreck- sorry to rant

Heidi, Tasha is right...I have been where you are to many times that I would like to admit but I got through it each time...You need time. You will soon learn to accept and move on. All you have to do is look at your Bex... I bet he's as happy and content as it gets.. If he is happy and comfy you must allow yourself the same. He is strong and healthy and happy. That right there is a miracle. He is blessed and so are you.

I hope you find your peace soon my friend!

Connie

[infantile_scoliosi s] I am a wreck- sorry to rant

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]

Carmell,

You are so right, it is a large, but small part of his life in the big picture. It is a big part of our lives right now, and maybe will be for a long time, but it is only a PART. Thank you so much for remiding me of that. Deep breaths. We will do it, he will thrive!!! Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Wed, December 16, 2009 8:32:03 PMSubject: Re: I am a wreck- sorry to rant

Heidi,Lots of deep breaths. Hang in there! Remember, in the grand scheme of life/long term, scoliosis is not what makes your child. He has SO MANY things going for him. Great parents and family who love him and want him to be whatever he wants to be. His life is filled with opportunities and amazing experiences that will help shape him as a person. Scoliosis is only a tiny, minute part of his life. People live very full and active lives with scoliosis, and most people never would know who they are. You have a great young man who will give you the emotional strength to get through this with him. You CAN and WILL do it, and with a positive attitude and the strength he needs from you. I promise. My scoliosis journey with Braydon is different, but, it's the process of the journey that counts in the end. You have one of the absolute best medical teams on your side

for Bex. They will NOT steer you wrong. Sometimes this takes lots of faith and seemingly blind trust. Again, you can do it. More deep breaths. One day you'll look back on Bex's life and have a huge sense of accomplishment at what you both have been through. It will be a good thing.Take care.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy- wears 3cm lift,

valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb- ivil.tripod. com/myfamily/Congenital scoliosis support grouphttp://health. .groups.yahoo. com/group/ CongenitalScolio sisSupport/

[Guest guest]

Carmell,

You are so right, it is a large, but small part of his life in the big picture. It is a big part of our lives right now, and maybe will be for a long time, but it is only a PART. Thank you so much for remiding me of that. Deep breaths. We will do it, he will thrive!!! Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Wed, December 16, 2009 8:32:03 PMSubject: Re: I am a wreck- sorry to rant

Heidi,Lots of deep breaths. Hang in there! Remember, in the grand scheme of life/long term, scoliosis is not what makes your child. He has SO MANY things going for him. Great parents and family who love him and want him to be whatever he wants to be. His life is filled with opportunities and amazing experiences that will help shape him as a person. Scoliosis is only a tiny, minute part of his life. People live very full and active lives with scoliosis, and most people never would know who they are. You have a great young man who will give you the emotional strength to get through this with him. You CAN and WILL do it, and with a positive attitude and the strength he needs from you. I promise. My scoliosis journey with Braydon is different, but, it's the process of the journey that counts in the end. You have one of the absolute best medical teams on your side

for Bex. They will NOT steer you wrong. Sometimes this takes lots of faith and seemingly blind trust. Again, you can do it. More deep breaths. One day you'll look back on Bex's life and have a huge sense of accomplishment at what you both have been through. It will be a good thing.Take care.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy- wears 3cm lift,

valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb- ivil.tripod. com/myfamily/Congenital scoliosis support grouphttp://health. .groups.yahoo. com/group/ CongenitalScolio sisSupport/

[Guest guest]

Carmell,

You are so right, it is a large, but small part of his life in the big picture. It is a big part of our lives right now, and maybe will be for a long time, but it is only a PART. Thank you so much for remiding me of that. Deep breaths. We will do it, he will thrive!!! Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Wed, December 16, 2009 8:32:03 PMSubject: Re: I am a wreck- sorry to rant

Heidi,Lots of deep breaths. Hang in there! Remember, in the grand scheme of life/long term, scoliosis is not what makes your child. He has SO MANY things going for him. Great parents and family who love him and want him to be whatever he wants to be. His life is filled with opportunities and amazing experiences that will help shape him as a person. Scoliosis is only a tiny, minute part of his life. People live very full and active lives with scoliosis, and most people never would know who they are. You have a great young man who will give you the emotional strength to get through this with him. You CAN and WILL do it, and with a positive attitude and the strength he needs from you. I promise. My scoliosis journey with Braydon is different, but, it's the process of the journey that counts in the end. You have one of the absolute best medical teams on your side

for Bex. They will NOT steer you wrong. Sometimes this takes lots of faith and seemingly blind trust. Again, you can do it. More deep breaths. One day you'll look back on Bex's life and have a huge sense of accomplishment at what you both have been through. It will be a good thing.Take care.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy- wears 3cm lift,

valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb- ivil.tripod. com/myfamily/Congenital scoliosis support grouphttp://health. .groups.yahoo. com/group/ CongenitalScolio sisSupport/

[Guest guest]

Chrissy,

I will take the hug and I can feel it!!! Thank you for your prayers. I've always known God loved me, and Bexon is a lot more lovable than I am, so he must be in God's hands ; ) Heidi, Bexon's Mama

To: "infantile_scoliosis " <infantile_scoliosis >Sent: Wed, December 16, 2009 9:01:44 PMSubject: Re: I am a wreck- sorry to rant

Heidi,

My heart is heavy for you right mow as I can feel your broken heart. I just wanted you to know that yet another distant friend is praying for you strength and peace in this crappy detour in the journey. I believe so much in the power of prayers and want you to know you are in mine... And Bex!!!

I am giving you a bear hug right now on spirit!!!!!! !!!

Hugs,

Chrissy

On Dec 16, 2009, at 5:50 PM, NIck Guthe <nickgutheyahoo (DOT) com> wrote:

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 you are just reacting like any of us parents would react to this news. As

a matter of fact, we feel it too. Our successes are everyones successes and our

let-downs are felt by all of us here. There are times for every emotion and you

are going thru what you need to go thru right now. Later on down the road things

will feel different you'll see. None of us have crystal balls to see into the

future so dont take your docs prediction as fact--have faith and keep chugging

along like you always have. You have such a positive and happy outlook on life

and I know you'll get to feeling like yourself soon. Hope you have a better day,

and give BEX and BIG HUG from me and MARCI(:

Dianna (mommy to Marcela, 18 mos. in 3rd cast)

>

>

>

> Subject: I am a wreck- sorry to rant

> To: infantile_scoliosis

> Date: Wednesday, December 16, 2009, 5:50 PM

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> 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,

I can understand your grief. I've been in that place many times with my little boy not only with the scoliosis, but he was born 3 months premature and there were lots of medical things that went on the first couple of years and many, many times when I wondered what exactly the future would hold for our little boy. My son went to a preschool that was half special needs children and I learned from watching the parents and children there that you can still find plenty of happiness. I can imagine how upsetting it is to think about your son having to wear a brace for such a long time, but in the grand scheme of life, this will be just a small part of it. He can still have a very happy, active childhood. And even though the doctor is preparing you for what he thinks is the most likely scenario, Bex might still prove him wrong One of my friends with two autistic boys

quotes Dory from Finding Nemo - "Just Keep Swimming". So, Just Keep Swimming, Heidi! And know that we are all here to support you and will be praying for Bex.

To: infantile_scoliosis Sent: Wed, December 16, 2009 6:50:28 PMSubject: I am a wreck- sorry to rant

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,

I can understand your grief. I've been in that place many times with my little boy not only with the scoliosis, but he was born 3 months premature and there were lots of medical things that went on the first couple of years and many, many times when I wondered what exactly the future would hold for our little boy. My son went to a preschool that was half special needs children and I learned from watching the parents and children there that you can still find plenty of happiness. I can imagine how upsetting it is to think about your son having to wear a brace for such a long time, but in the grand scheme of life, this will be just a small part of it. He can still have a very happy, active childhood. And even though the doctor is preparing you for what he thinks is the most likely scenario, Bex might still prove him wrong One of my friends with two autistic boys

quotes Dory from Finding Nemo - "Just Keep Swimming". So, Just Keep Swimming, Heidi! And know that we are all here to support you and will be praying for Bex.

To: infantile_scoliosis Sent: Wed, December 16, 2009 6:50:28 PMSubject: I am a wreck- sorry to rant

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)