Perspective

[Guest guest]

Heidi...my son is 2 years, 4 months. SLC received our records last week and they will get back to us by next week. Something you said caught my eye...do you think we "missed the window"? Zachary also has a syrinx and I spent 2 weeks of sleepless nights--up on the net all night researching syringomyelia. I expended so much energy and tears worried about what the syrinx is going to do IN THE FUTURE. i had to break out of it. Right now God has brought me peace but the longer I wait to hear back from SLC the harder it gets. To: infantile_scoliosis Sent: Wednesday, August 5, 2009 1:16:07 PMSubject: Re: Perspective

My therapist diagnosed post traumatic stress disorder for me also! After Bexon's situation came at us so fast, we heard the words potentially fatal, severely deforming, had to get MRIs, found a syrrinx, which can cause permanent nerve damage...etc. ..all within weeks...and we nearly missed the window to get him in a cast. I have not gone on antidepressants and hope not to- I don't have anything against them AT All- but I did self medicate with binges. Trying not to do that now! It's how I deal with stress, apparently!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)--- On

Wed, 8/5/09, Jane Bigler <janemharyahoo (DOT) com> wrote:

From: Jane Bigler <janemharyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, August 5, 2009, 10:34 AM

Lynn, I have the same problem. Vent away, that's what we're here for. Also, I have had to go on anti-depressants at times when things get so overwhelming. I just went back on Wellbuterin last week because between all the loss of those around me and Grace's upcoming surgery, well, I just couldn't deal anymore. I'm not on a huge dose, just a bit to help me stay on the good side of the hump. My doctor finally noted that she thinks that it is a form of PTSD. For us, as I said, we didn't know if Grace would survive. So, for us, it was a very traumatic stressfull situation. Then, when it all turned out for the good, I didn't know what to do with all those feelings or where to go with it all.

Hope this helps.

Jane

From: Lynn Marsden <lynn_marsden@ yahoo.com>To: infantile_scoliosis @yahoogroups. comSent: Wednesday, August 5, 2009 10:15:32 AMSubject: Re: [infantile_scoliosi s] Perspective

Hi All

I guess I'm still just struggling to get into a comfortable frame of mind. Some days I think "I can totally deal with this" other days I'm a mess! I guess I'm just worried about his hypotonia (low tone) along with his scoli as well. I can't help but to think "will my baby ever learn to do the things others kids his age can do?" Will he ever walk, crawl etc.? I agree other families have it way worse off than I do, its evident when we go to the children's hospital but I still can't help but to feel sorry for my son. I've had people say "you don't know how lucky you are!" but in all truth I don't feel lucky at all. I know this is 100 percent selfish and I wish I could get past it but I'm really struggling. Maybe its just still too soon, he is still only in his first cast, so perhaps over time I will gather that strength and confidence and stop dwelling in my self pity. I am always very careful

that I don't project my feelings onto my son, I would never want him to know how hard this is on us all so I'm always very positive around him for his sake. I would hate for him to feel my sadness, he doesn't deserve that, he has enough to deal with. Ok I hope I haven't depressed everyone, it just helps sometimes to get things off my chest.

From: Jane Bigler <janemharyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 3:47 PM

Heidi, thank you for sharing. It is good to have things brought into perspective.

In the last 3 months I have had 2 very close friends deliver full-term stillborn babies. Proving to me that life is NOT fair.. And unfortunately this has done nothing for the most part to help me keep Grace's problems in perspective, but in other ways it has. From 20 weeks gestation on, it was a constant worry that Grace's omphalocele would cause us to lose her because there is so much unknown about the condition before they are born, other than the approximate size of it. Then she was born with no eating issues, bowel issues, heart, kidney, etc. All the typical problems "O" babies can have, she didn't. It has made me question why we were the lucky ones to have her be so amazing and only have a 9 day stay in the NICU when other babies with the same condition spend at least 3-4 months, if not their entire first year of life in the hospital.

The losses of my friends has made more fear creep in that "all good things must come to an end" and that our luck is running out and that one of these times she has a procedure, she isn't going to be the lucky one anymore. I have heard from friends, family and church family SO many times that she is the "miracle" baby. I cringe at that. People whisper it. It drives me nuts. I want people to recognize that yes, she is strong, she is amazing, she has endured, but it was with prayer AND the current medical technologies that have allowed her "issues" to be resolved fairly simply. But so have so many other kids who have had it so much worse. She isn't the miracle. Knowledge is the miracle.

While at the memorial service this last weekend for one of the babies, the ones that knew of Grace's upcoming surgery were consoling me. They should have been consoling the family who had lost.

Sorry for my ramble. You just got me thinking...dangerou s thing sometimes, lol.

Jane

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 2:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

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[Guest guest]

The first surgery Moriah had (at 2 weeks old) was open heart to shunt bloodflow due to a congenital defect she has. While in the PICU, which was open at the time, just curtains, no sliding glass doors, a young girl about 8 years old died next to her. I was holding Moriah at the time, singing to her, when it all happened. The chaos, the staff rushing to this girl to try to save her, all I could do was cry from my side of the curtain and pray for her family. I even heard her mother's heartbreaking wails. I prayed then that by His grace I would withstand anything God wanted to bring my way regarding Moriah, but I begged Him not to give me what I had just witnessed. What we go through is tough. Surgery is not fun. But I can think of few things worse than losing someone you love, especially a child.

shellie grant

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Well said Shellie.

Ever since was dx'd and had her brace at the age of 2, then her first surgery at 3, I have had people say, well meaningly of course, "Oh you are so strong" "Oh how can you deal with this?" etc.

I have always said "What has is not life threatening. It is not going to do her or me any good to sit there and moan about my "poor baby" when in fact we are doing everything we possibly can for her." I just rejoice in what she can do, and don't worry about what she can't do - which isn't much! And, as most of you know, she has a sassy personality that gets her through the rough times.

has no fear of talking to anyone and everyone about her surgeries, scoliosis and about the fact that she isn't allowed to play football or ice hockey. Last week in DC she was talking to a United Way lobbiest from Oklahoma about her scoliosis at lunch. It was purely by chance that this group asked to share the table we were at in the cafeteria of the House of Representatives building. I wanted to ask them if they supported the NSF, but didn't get the chance.

It is all perspective.

Gail

"The Earth is the insane asylum for the rest of universe"

“Normal is just a setting on the washing machine.†-BumperSnickerz. ********************************************************************Mom to , 11/28/98 - ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05, 04/20/06, 6/12/08 and scheduled for July 10, 2009; Mole (Spitz Nevus) removal: 11/26/07 & 2/11/08

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

That is so sad. That poor mother.

To: infantile_scoliosis Sent: Thursday, August 6, 2009 7:23:45 AMSubject: Re: Perspective

The first surgery Moriah had (at 2 weeks old) was open heart to shunt bloodflow due to a congenital defect she has. While in the PICU, which was open at the time, just curtains, no sliding glass doors, a young girl about 8 years old died next to her. I was holding Moriah at the time, singing to her, when it all happened. The chaos, the staff rushing to this girl to try to save her, all I could do was cry from my side of the curtain and pray for her family. I even heard her mother's heartbreaking wails. I prayed then that by His grace I would withstand anything God wanted to bring my way regarding Moriah, but I begged Him not to give me what I had just witnessed. What we go through is tough. Surgery is not fun. But I can think of few things worse than losing someone you love, especially a child.

shellie grant

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Hi ,

I can't answer that, but here are some things that may help make sense of it. The general rule of thumb for the best correction- or hope of getting back to "straight" or zero...is to begin casting under 2 years and under 50 degrees. That's because the human spine grows 50 percent in the first 2 years of life, then slows down. In general, the older the child and the higher the curve degree, you can miss the window for correction with casting, BUT every child is different and has growth spurts at different times.

If SLC thinks casting would benefit your child, they will accept you and I would do it. Kids who get to a high curve or are much older than 2 can benefit from casting as a way to hold the curve from getting worse, which in progressive cases, bracing usually doesn't do.

Progressive kids often continue to curve in a brace, if they haven't been corrected by casting first. If you do every need to do surgery, the longer you can hold off on it, the better, which is why casting can benefit a child who may have missed the window for correction with casting alone. Hope that info helps, but as I said, every child is unique!

Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: Jane Bigler <janemharyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 3:47 PM

Heidi, thank you for sharing. It is good to have things brought into perspective.

In the last 3 months I have had 2 very close friends deliver full-term stillborn babies. Proving to me that life is NOT fair.. And unfortunately this has done nothing for the most part to help me keep Grace's problems in perspective, but in other ways it has. From 20 weeks gestation on, it was a constant worry that Grace's omphalocele would cause us to lose her because there is so much unknown about the condition before they are born, other than the approximate size of it. Then she was born with no eating issues, bowel issues, heart, kidney, etc. All the typical problems "O" babies can have, she didn't. It has made me question why we were the lucky ones to have her be so amazing and only have a 9 day stay in the NICU when other babies with the same condition spend at least 3-4 months, if not their entire first year of life in the hospital.

The losses of my friends has made more fear creep in that "all good things must come to an end" and that our luck is running out and that one of these times she has a procedure, she isn't going to be the lucky one anymore. I have heard from friends, family and church family SO many times that she is the "miracle" baby. I cringe at that. People whisper it. It drives me nuts. I want people to recognize that yes, she is strong, she is amazing, she has endured, but it was with prayer AND the current medical technologies that have allowed her "issues" to be resolved fairly simply. But so have so many other kids who have had it so much worse. She isn't the miracle. Knowledge is the miracle.

While at the memorial service this last weekend for one of the babies, the ones that knew of Grace's upcoming surgery were consoling me. They should have been consoling the family who had lost.

Sorry for my ramble. You just got me thinking...dangerou s thing sometimes, lol.

Jane

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 2:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail

[Guest guest]

Thank you for that Shellie *hugs*

Jane

To: infantile_scoliosis Sent: Thursday, August 6, 2009 5:23:45 AMSubject: Re: Perspective

The first surgery Moriah had (at 2 weeks old) was open heart to shunt bloodflow due to a congenital defect she has. While in the PICU, which was open at the time, just curtains, no sliding glass doors, a young girl about 8 years old died next to her. I was holding Moriah at the time, singing to her, when it all happened. The chaos, the staff rushing to this girl to try to save her, all I could do was cry from my side of the curtain and pray for her family. I even heard her mother's heartbreaking wails. I prayed then that by His grace I would withstand anything God wanted to bring my way regarding Moriah, but I begged Him not to give me what I had just witnessed. What we go through is tough. Surgery is not fun. But I can think of few things worse than losing someone you love, especially a child.

shellie grant

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Here's a quote I like:

"Without the lows...the challenges, the adversity, nothing has meaning. Nothing."

- Hamilton, 2 time cancer survivor and Olympic gold medalist

And this is a Buddhist belief:

When a lot of things go wrong at once, it is because something special and very beautiful is trying to be born.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Awesome Gail! You and I think alike. I also think might make a good president some day! What a remarkable girl. Hug her for me will ya?? Glad you had such a great trip.

shellie

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Hey the Secret Service guys were ready to back her! Now she has a t-shirt that I found for her that says "Future President." Healthcare reform will be an issue for her and she will get it right!

Gail

"The Earth is the insane asylum for the rest of universe"

“Normal is just a setting on the washing machine.†-BumperSnickerz. ********************************************************************Mom to , 11/28/98 - ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05, 04/20/06, 6/12/08 and scheduled for July 10, 2009; Mole (Spitz Nevus) removal: 11/26/07 & 2/11/08

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Heidi,I agree with you that healthy people can be less happy.  I work with someone who tells me everyday how bad her life is and there's nothing wrong in her life at all. I always tell  her to find someone else to complain to.  I can't even believe she has the nerve to do that in front of me! Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)To: infantile_scoliosis Sent: Wednesday, August 5, 2009 11:19:49 AMSubject: Re: Perspective

 

Patty,

 

Losing a child has to be the worst thing that can happen to anyone. You are so very strong to be facing health problems with your Izzy now! God or the Universe must really think you are Superwoman. That is my worst fear, of course, to lose Bex. I know of other friend's families where they have a child with major health problems who is very happy and lights up their life. Who are we to say that child is not having a happy/good life experience? I think sometimes healthy people are less happy!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:06 PM

 

Heidi,

I try to count my blessings too but I was so bitter for so long after losing my first son 10 years ago and it just made it worse when Isabella was diagnosed with PIS.  I know I can't be like that though when so many kids are so worse off than Izzy.  My own nephew has a disease which is extremely rare and he's 10 and can't walk or talk but he's one of the happiest kids in the world and his smile just lights me up! 

 Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 5:26:18 PMSubject: [infantile_scoliosi s] Perspective 

So, I had to share this. 

 

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

 

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

 

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Patty, I have a sister like that. I love her dearly but she has the "perfect" life and no problems at all. And she is always complaining and depressed and unhappy. I try to tell her what I am going through with Hayden but she still doesn't "get it". It's very frustrating.

Joan

To: infantile_scoliosis Sent: Thursday, August 6, 2009 7:29:13 PMSubject: Re: Perspective

Heidi,

I agree with you that healthy people can be less happy. I work with someone who tells me everyday how bad her life is and there's nothing wrong in her life at all. I always tell her to find someone else to complain to. I can't even believe she has the nerve to do that in front of me!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Wednesday, August 5, 2009 11:19:49 AMSubject: Re: [infantile_scoliosi s] Perspective

Patty,

Losing a child has to be the worst thing that can happen to anyone. You are so very strong to be facing health problems with your Izzy now! God or the Universe must really think you are Superwoman. That is my worst fear, of course, to lose Bex. I know of other friend's families where they have a child with major health problems who is very happy and lights up their life. Who are we to say that child is not having a happy/good life experience? I think sometimes healthy people are less happy!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:06 PM

Heidi,

I try to count my blessings too but I was so bitter for so long after losing my first son 10 years ago and it just made it worse when Isabella was diagnosed with PIS. I know I can't be like that though when so many kids are so worse off than Izzy. My own nephew has a disease which is extremely rare and he's 10 and can't walk or talk but he's one of the happiest kids in the world and his smile just lights me up!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 5:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Joan and Patty,

I feel you!!! My family complains about everything but has money and healthy children, and i have neither one. So we should just ignore them and feel blessed anyway!!!

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:06 PM

Heidi,

I try to count my blessings too but I was so bitter for so long after losing my first son 10 years ago and it just made it worse when Isabella was diagnosed with PIS. I know I can't be like that though when so many kids are so worse off than Izzy. My own nephew has a disease which is extremely rare and he's 10 and can't walk or talk but he's one of the happiest kids in the world and his smile just lights me up!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 5:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Good advice ...

To: infantile_scoliosis Sent: Thursday, August 6, 2009 7:43:31 PMSubject: Re: Perspective

Joan and Patty,

I feel you!!! My family complains about everything but has money and healthy children, and i have neither one. So we should just ignore them and feel blessed anyway!!!

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:06 PM

Heidi,

I try to count my blessings too but I was so bitter for so long after losing my first son 10 years ago and it just made it worse when Isabella was diagnosed with PIS. I know I can't be like that though when so many kids are so worse off than Izzy. My own nephew has a disease which is extremely rare and he's 10 and can't walk or talk but he's one of the happiest kids in the world and his smile just lights me up!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 5:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Joan,It is very frustrating! I'll continue to try and not let her bother me. Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)To: infantile_scoliosis Sent: Thursday, August 6, 2009 8:36:35 PMSubject: Re:

Perspective

 

Patty, I have a sister like that. I love her dearly but she has the "perfect" life and no problems at all. And she is always complaining and depressed and unhappy. I try to tell her what I am going through with Hayden but she still doesn't "get it". It's very frustrating.

 

Joan

 

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thursday, August 6, 2009 7:29:13 PMSubject: Re: [infantile_scoliosi s] Perspective 

Heidi,

I agree with you that healthy people can be less happy.  I work with someone who tells me everyday how bad her life is and there's nothing wrong in her life at all. I always tell  her to find someone else to complain to.  I can't even believe she has the nerve to do that in front of me!

 Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Wednesday, August 5, 2009 11:19:49 AMSubject: Re: [infantile_scoliosi s] Perspective 

Patty,

 

Losing a child has to be the worst thing that can happen to anyone. You are so very strong to be facing health problems with your Izzy now! God or the Universe must really think you are Superwoman. That is my worst fear, of course, to lose Bex. I know of other friend's families where they have a child with major health problems who is very happy and lights up their life. Who are we to say that child is not having a happy/good life experience? I think sometimes healthy people are less happy!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:06 PM

 

Heidi,

I try to count my blessings too but I was so bitter for so long after losing my first son 10 years ago and it just made it worse when Isabella was diagnosed with PIS.  I know I can't be like that though when so many kids are so worse off than Izzy.  My own nephew has a disease which is extremely rare and he's 10 and can't walk or talk but he's one of the happiest kids in the world and his smile just lights me up! 

 Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 5:26:18 PMSubject: [infantile_scoliosi s] Perspective 

So, I had to share this. 

 

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

 

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

 

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

,I agree 100%!!!!!!! Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)To: infantile_scoliosis Sent: Thursday, August 6, 2009 8:43:31 PMSubject: Re: Perspective

 

Joan and Patty,

I feel you!!!  My family complains about everything but has money and healthy children, and i have neither one.  So we should just ignore them and feel blessed anyway!!!

 

 

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:06 PM

 

Heidi,

I try to count my blessings too but I was so bitter for so long after losing my first son 10 years ago and it just made it worse when Isabella was diagnosed with PIS.  I know I can't be like that though when so many kids are so worse off than Izzy.  My own nephew has a disease which is extremely rare and he's 10 and can't walk or talk but he's one of the happiest kids in the world and his smile just lights me up! 

 Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 5:26:18 PMSubject: [infantile_scoliosi s] Perspective 

So, I had to share this. 

 

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

 

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

 

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment.. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Good advice Patty. I will focus on the wellness and health of Hayden and moving forward and not worry about what my sister is upset about today. So glad I have this group to "vent" to, nobody else truly understands. Thanks

Joan

To: infantile_scoliosis Sent: Friday, August 7, 2009 12:13:58 AMSubject: Re: Perspective

Joan,

It is very frustrating! I'll continue to try and not let her bother me.

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thursday, August 6, 2009 8:36:35 PMSubject: Re: [infantile_scoliosi s] Perspective

Patty, I have a sister like that. I love her dearly but she has the "perfect" life and no problems at all. And she is always complaining and depressed and unhappy. I try to tell her what I am going through with Hayden but she still doesn't "get it". It's very frustrating.

Joan

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thursday, August 6, 2009 7:29:13 PMSubject: Re: [infantile_scoliosi s] Perspective

Heidi,

I agree with you that healthy people can be less happy. I work with someone who tells me everyday how bad her life is and there's nothing wrong in her life at all. I always tell her to find someone else to complain to. I can't even believe she has the nerve to do that in front of me!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Wednesday, August 5, 2009 11:19:49 AMSubject: Re: [infantile_scoliosi s] Perspective

Patty,

Losing a child has to be the worst thing that can happen to anyone. You are so very strong to be facing health problems with your Izzy now! God or the Universe must really think you are Superwoman. That is my worst fear, of course, to lose Bex. I know of other friend's families where they have a child with major health problems who is very happy and lights up their life. Who are we to say that child is not having a happy/good life experience? I think sometimes healthy people are less happy!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:06 PM

Heidi,

I try to count my blessings too but I was so bitter for so long after losing my first son 10 years ago and it just made it worse when Isabella was diagnosed with PIS. I know I can't be like that though when so many kids are so worse off than Izzy. My own nephew has a disease which is extremely rare and he's 10 and can't walk or talk but he's one of the happiest kids in the world and his smile just lights me up!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 5:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

[Guest guest]

Joan,That's for sure!  This group is the BEST!!!!!!!!!!!!!!!! Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)To: infantile_scoliosis Sent: Friday, August 7, 2009 8:53:25 AMSubject: Re:

Perspective

 

Good advice Patty. I will focus on the wellness and health of Hayden and moving forward and not worry about what my sister is upset about today. So glad I have this group to "vent" to, nobody else truly understands. Thanks

Joan

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Friday, August 7, 2009 12:13:58 AMSubject: Re: [infantile_scoliosi s] Perspective 

Joan,

It is very frustrating! I'll continue to try and not let her bother me.

 Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thursday, August 6, 2009 8:36:35 PMSubject: Re: [infantile_scoliosi s] Perspective 

Patty, I have a sister like that. I love her dearly but she has the "perfect" life and no problems at all. And she is always complaining and depressed and unhappy. I try to tell her what I am going through with Hayden but she still doesn't "get it". It's very frustrating.

 

Joan

 

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thursday, August 6, 2009 7:29:13 PMSubject: Re: [infantile_scoliosi s] Perspective 

Heidi,

I agree with you that healthy people can be less happy.  I work with someone who tells me everyday how bad her life is and there's nothing wrong in her life at all. I always tell  her to find someone else to complain to.  I can't even believe she has the nerve to do that in front of me!

 Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Wednesday, August 5, 2009 11:19:49 AMSubject: Re: [infantile_scoliosi s] Perspective 

Patty,

 

Losing a child has to be the worst thing that can happen to anyone. You are so very strong to be facing health problems with your Izzy now! God or the Universe must really think you are Superwoman. That is my worst fear, of course, to lose Bex. I know of other friend's families where they have a child with major health problems who is very happy and lights up their life. Who are we to say that child is not having a happy/good life experience? I think sometimes healthy people are less happy!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 9:06 PM

 

Heidi,

I try to count my blessings too but I was so bitter for so long after losing my first son 10 years ago and it just made it worse when Isabella was diagnosed with PIS.  I know I can't be like that though when so many kids are so worse off than Izzy.  My own nephew has a disease which is extremely rare and he's 10 and can't walk or talk but he's one of the happiest kids in the world and his smile just lights me up! 

 Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 5:26:18 PMSubject: [infantile_scoliosi s] Perspective 

So, I had to share this. 

 

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

 

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

 

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)