New to the group

[Guest guest]

Hi ,

I just sent you a private message. Please let me know if you got it. - Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

Subject: New To The GroupTo: infantile_scoliosis Date: Sunday, February 7, 2010, 3:11 AM

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Hi ,

I just sent you a private message. Please let me know if you got it. - Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

Subject: New To The GroupTo: infantile_scoliosis Date: Sunday, February 7, 2010, 3:11 AM

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Thank you! Nadya's pectus is severe, and the doctors are afraid if they cast her before it is fixed it will further deform her and cause more problems.

Hip dysplasia can be tricky. Nadya had a spica cast for 3 months and still dislocates from time to time. The doctor that had done her spica told me that

because of Nadya's hyptonia that it might dislocate forever, if it causes problems later in her life we will address it again then.

Nadya's Mom

To: infantile_scoliosis Sent: Sun, February 7, 2010 11:12:42 AMSubject: Re: New To The Group

Welcome, !!! I actually have mild pectus excavatum myself. My niece Isadora has hip dysplasia also- she's 3 and may be having a second surgery and full body spica cast soon. It's interesting how these things can sometimes be connected to scoliosis.May I ask why they have to fix the pectus first? My guess is it must be severe. I have seen online it can be surgically corrected. Please ask any and all questions of this great group!

Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)

From: Crankshaw <karencrankshaw@ ymail.com>To: infantile_scoliosis @yahoogroups. comSent: Sat, February 6, 2010 7:11:54 PMSubject: [infantile_scoliosi s] New To The Group

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Thank you! Nadya's pectus is severe, and the doctors are afraid if they cast her before it is fixed it will further deform her and cause more problems.

Hip dysplasia can be tricky. Nadya had a spica cast for 3 months and still dislocates from time to time. The doctor that had done her spica told me that

because of Nadya's hyptonia that it might dislocate forever, if it causes problems later in her life we will address it again then.

Nadya's Mom

To: infantile_scoliosis Sent: Sun, February 7, 2010 11:12:42 AMSubject: Re: New To The Group

Welcome, !!! I actually have mild pectus excavatum myself. My niece Isadora has hip dysplasia also- she's 3 and may be having a second surgery and full body spica cast soon. It's interesting how these things can sometimes be connected to scoliosis.May I ask why they have to fix the pectus first? My guess is it must be severe. I have seen online it can be surgically corrected. Please ask any and all questions of this great group!

Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)

From: Crankshaw <karencrankshaw@ ymail.com>To: infantile_scoliosis @yahoogroups. comSent: Sat, February 6, 2010 7:11:54 PMSubject: [infantile_scoliosi s] New To The Group

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Thank You Connie! Nadya's genetic diagnosis is 's Mosacism. This means that she may have all, some or none of the characteristics of

's Syndrome. We do know that scoliosis, hip dysplasia, and her short stature are some that she has.

Did your son have the VEPTR?

Nadya's Mom

To: infantile_scoliosis Sent: Sun, February 7, 2010 7:34:45 AMSubject: Re: New To The Group

Welcome ,

Your Nadya sounds a bit like my son. He had many of the same health issues. Does she have a diagnosis of some kind? Perhaps a connective tissue disorder?

My son unfortunately did not benefit from casting (he's 11) but you will get so much info from all the great parents on this group...They are a great support and will answer any questions you may have.

Looks like it may be a long road for you but well worth it. Good luck to you and Nadya!

Connie

[infantile_scoliosi s] New To The Group

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Thank You Connie! Nadya's genetic diagnosis is 's Mosacism. This means that she may have all, some or none of the characteristics of

's Syndrome. We do know that scoliosis, hip dysplasia, and her short stature are some that she has.

Did your son have the VEPTR?

Nadya's Mom

To: infantile_scoliosis Sent: Sun, February 7, 2010 7:34:45 AMSubject: Re: New To The Group

Welcome ,

Your Nadya sounds a bit like my son. He had many of the same health issues. Does she have a diagnosis of some kind? Perhaps a connective tissue disorder?

My son unfortunately did not benefit from casting (he's 11) but you will get so much info from all the great parents on this group...They are a great support and will answer any questions you may have.

Looks like it may be a long road for you but well worth it. Good luck to you and Nadya!

Connie

[infantile_scoliosi s] New To The Group

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Thank You Connie! Nadya's genetic diagnosis is 's Mosacism. This means that she may have all, some or none of the characteristics of

's Syndrome. We do know that scoliosis, hip dysplasia, and her short stature are some that she has.

Did your son have the VEPTR?

Nadya's Mom

To: infantile_scoliosis Sent: Sun, February 7, 2010 7:34:45 AMSubject: Re: New To The Group

Welcome ,

Your Nadya sounds a bit like my son. He had many of the same health issues. Does she have a diagnosis of some kind? Perhaps a connective tissue disorder?

My son unfortunately did not benefit from casting (he's 11) but you will get so much info from all the great parents on this group...They are a great support and will answer any questions you may have.

Looks like it may be a long road for you but well worth it. Good luck to you and Nadya!

Connie

[infantile_scoliosi s] New To The Group

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Hi ,Have you already spoken by phone with Hyatt Montoya, the founder of this group and ISOP, or by email? She is a wealth of information and experience and can cover a lot of ground by phone. I only bring it up because her daughter Olivia (Liv) had both a hip issue and the progressive scoli, but you may already have spoken. Hypotonia comes up here a lot, as well. I agree that hip dysplasia can be tricky, my niece has already fallen into the small percentage who didn't get cured by the first surgery and 2 spica casts at 7 months. This one would involve cutting bone, so they are weighing all options, as we all do, but my sister will go with what is the best road available for Isadora's future- tough decisions.Heidi, Bexon's Mama, (2.5 years old, in 5th cast

from Salt Lake City Shriners, currently down from 61 degrees to 23)To: infantile_scoliosis Sent: Sun, February 7, 2010 4:53:35 PMSubject: Re: New To The Group

Thank you! Nadya's pectus is severe, and the doctors are afraid if they cast her before it is fixed it will further deform her and cause more problems.

Hip dysplasia can be tricky. Nadya had a spica cast for 3 months and still dislocates from time to time. The doctor that had done her spica told me that

because of Nadya's hyptonia that it might dislocate forever, if it causes problems later in her life we will address it again then.

Nadya's Mom

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Sun, February 7, 2010 11:12:42 AMSubject: Re: [infantile_scoliosi s] New To The Group

Welcome, !!! I actually have mild pectus excavatum myself. My niece Isadora has hip dysplasia also- she's 3 and may be having a second surgery and full body spica cast soon. It's interesting how these things can sometimes be connected to scoliosis.May I ask why they have to fix the pectus first? My guess is it must be severe. I have seen online it can be surgically corrected. Please ask any and all questions of this great group!

Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)

From: Crankshaw <karencrankshaw@ ymail.com>To: infantile_scoliosis @yahoogroups. comSent: Sat, February 6, 2010 7:11:54 PMSubject: [infantile_scoliosi s] New To The Group

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Hi ,Have you already spoken by phone with Hyatt Montoya, the founder of this group and ISOP, or by email? She is a wealth of information and experience and can cover a lot of ground by phone. I only bring it up because her daughter Olivia (Liv) had both a hip issue and the progressive scoli, but you may already have spoken. Hypotonia comes up here a lot, as well. I agree that hip dysplasia can be tricky, my niece has already fallen into the small percentage who didn't get cured by the first surgery and 2 spica casts at 7 months. This one would involve cutting bone, so they are weighing all options, as we all do, but my sister will go with what is the best road available for Isadora's future- tough decisions.Heidi, Bexon's Mama, (2.5 years old, in 5th cast

from Salt Lake City Shriners, currently down from 61 degrees to 23)To: infantile_scoliosis Sent: Sun, February 7, 2010 4:53:35 PMSubject: Re: New To The Group

Thank you! Nadya's pectus is severe, and the doctors are afraid if they cast her before it is fixed it will further deform her and cause more problems.

Hip dysplasia can be tricky. Nadya had a spica cast for 3 months and still dislocates from time to time. The doctor that had done her spica told me that

because of Nadya's hyptonia that it might dislocate forever, if it causes problems later in her life we will address it again then.

Nadya's Mom

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Sun, February 7, 2010 11:12:42 AMSubject: Re: [infantile_scoliosi s] New To The Group

Welcome, !!! I actually have mild pectus excavatum myself. My niece Isadora has hip dysplasia also- she's 3 and may be having a second surgery and full body spica cast soon. It's interesting how these things can sometimes be connected to scoliosis.May I ask why they have to fix the pectus first? My guess is it must be severe. I have seen online it can be surgically corrected. Please ask any and all questions of this great group!

Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)

From: Crankshaw <karencrankshaw@ ymail.com>To: infantile_scoliosis @yahoogroups. comSent: Sat, February 6, 2010 7:11:54 PMSubject: [infantile_scoliosi s] New To The Group

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Hi ,Have you already spoken by phone with Hyatt Montoya, the founder of this group and ISOP, or by email? She is a wealth of information and experience and can cover a lot of ground by phone. I only bring it up because her daughter Olivia (Liv) had both a hip issue and the progressive scoli, but you may already have spoken. Hypotonia comes up here a lot, as well. I agree that hip dysplasia can be tricky, my niece has already fallen into the small percentage who didn't get cured by the first surgery and 2 spica casts at 7 months. This one would involve cutting bone, so they are weighing all options, as we all do, but my sister will go with what is the best road available for Isadora's future- tough decisions.Heidi, Bexon's Mama, (2.5 years old, in 5th cast

from Salt Lake City Shriners, currently down from 61 degrees to 23)To: infantile_scoliosis Sent: Sun, February 7, 2010 4:53:35 PMSubject: Re: New To The Group

Thank you! Nadya's pectus is severe, and the doctors are afraid if they cast her before it is fixed it will further deform her and cause more problems.

Hip dysplasia can be tricky. Nadya had a spica cast for 3 months and still dislocates from time to time. The doctor that had done her spica told me that

because of Nadya's hyptonia that it might dislocate forever, if it causes problems later in her life we will address it again then.

Nadya's Mom

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Sun, February 7, 2010 11:12:42 AMSubject: Re: [infantile_scoliosi s] New To The Group

Welcome, !!! I actually have mild pectus excavatum myself. My niece Isadora has hip dysplasia also- she's 3 and may be having a second surgery and full body spica cast soon. It's interesting how these things can sometimes be connected to scoliosis.May I ask why they have to fix the pectus first? My guess is it must be severe. I have seen online it can be surgically corrected. Please ask any and all questions of this great group!

Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)

From: Crankshaw <karencrankshaw@ ymail.com>To: infantile_scoliosis @yahoogroups. comSent: Sat, February 6, 2010 7:11:54 PMSubject: [infantile_scoliosi s] New To The Group

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Hi ,

Welcome. May I ask how they are going to fix the pectus? Who is doing it and where? My son has pectus excavatum too. At this point we haven't researched what needs to be done to address it. Thank you for any information you can offer.

Jill (Mom to , almost 4 in a brace after 2 years of casting)

Subject: New To The GroupTo: infantile_scoliosis Date: Saturday, February 6, 2010, 10:11 PM

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Hi Jill! Thank You! The surgery is The Nuss Procedure. It is a minimally invasive surgery where they make a small incision on each side of the rid cage and slid a metal rod though under the ribs and then flip it up to pop the rib cage out in to the position that it is suppose to be in.

Nadya's procedure is being done by Dr. Chrystine Whyte at Albany Medical Center in Albany, NY. Most children's pectus aren't addressed until they are between the ages of 6 and 12. Nadya's is only 2 1/2 but her pectus has become progressively worse over time, because they don't typically do the surgery on children so small they have to have a special rod made, Nadya will be the smallest child that Dr. Whyte has ever done the procedure on.

If you don't mind me asking, is your sons pectus deep? Did they have any concerns for further deforming the rib cage in the casting process?I hope this info. was helpful.

Nadya's Mom

To: infantile_scoliosis Sent: Mon, February 8, 2010 5:16:56 PMSubject: Re: New To The Group

Hi ,

Welcome. May I ask how they are going to fix the pectus? Who is doing it and where? My son has pectus excavatum too. At this point we haven't researched what needs to be done to address it. Thank you for any information you can offer.

Jill (Mom to , almost 4 in a brace after 2 years of casting)

From: Crankshaw <karencrankshaw@ ymail.com>Subject: [infantile_scoliosi s] New To The GroupTo: infantile_scoliosis @yahoogroups. comDate: Saturday, February 6, 2010, 10:11 PM

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Hi Jill! Thank You! The surgery is The Nuss Procedure. It is a minimally invasive surgery where they make a small incision on each side of the rid cage and slid a metal rod though under the ribs and then flip it up to pop the rib cage out in to the position that it is suppose to be in.

Nadya's procedure is being done by Dr. Chrystine Whyte at Albany Medical Center in Albany, NY. Most children's pectus aren't addressed until they are between the ages of 6 and 12. Nadya's is only 2 1/2 but her pectus has become progressively worse over time, because they don't typically do the surgery on children so small they have to have a special rod made, Nadya will be the smallest child that Dr. Whyte has ever done the procedure on.

If you don't mind me asking, is your sons pectus deep? Did they have any concerns for further deforming the rib cage in the casting process?I hope this info. was helpful.

Nadya's Mom

To: infantile_scoliosis Sent: Mon, February 8, 2010 5:16:56 PMSubject: Re: New To The Group

Hi ,

Welcome. May I ask how they are going to fix the pectus? Who is doing it and where? My son has pectus excavatum too. At this point we haven't researched what needs to be done to address it. Thank you for any information you can offer.

Jill (Mom to , almost 4 in a brace after 2 years of casting)

From: Crankshaw <karencrankshaw@ ymail.com>Subject: [infantile_scoliosi s] New To The GroupTo: infantile_scoliosis @yahoogroups. comDate: Saturday, February 6, 2010, 10:11 PM

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

That is so interesting and quite helpful. It is nice to know there are things that can be done if we reach the point where we need to address the pectus. Is the Nuss procedure done in most areas of the country? We live in Columbus, Ohio, but travel to Rochester to see the same casting doctor as you see! No one has ever given us any terminology in regards to 's pectus, but it is definitely more than very mild. I think it would be considered moderate. We have had concerns about the casting and bracing preventing the ribs from expanding and thus forcing the pectus excavatus to become worse, but the scoli is more severe so... Our casting doctor wasn't too worried about it, but he does look at it each visit. He at first told us he wasn't concerned about the casting and pectus. We will have

xrayed here at the end of the month and sent to our casting doc in Rochester. I plan on bringing it up to him again then. I will let you know what he says. Also, Marfans was brought up due to the lack of progress after casting and the scoli and pectus ex.

When will little Nadya have her surgery? I will be saying special prayers for her (and you too!)

Thank you

JIll

Mom to

From: Crankshaw <karencrankshaw@ ymail.com>Subject: [infantile_scoliosi s] New To The GroupTo: infantile_scoliosis @yahoogroups. comDate: Saturday, February 6, 2010, 10:11 PM

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

That is so interesting and quite helpful. It is nice to know there are things that can be done if we reach the point where we need to address the pectus. Is the Nuss procedure done in most areas of the country? We live in Columbus, Ohio, but travel to Rochester to see the same casting doctor as you see! No one has ever given us any terminology in regards to 's pectus, but it is definitely more than very mild. I think it would be considered moderate. We have had concerns about the casting and bracing preventing the ribs from expanding and thus forcing the pectus excavatus to become worse, but the scoli is more severe so... Our casting doctor wasn't too worried about it, but he does look at it each visit. He at first told us he wasn't concerned about the casting and pectus. We will have

xrayed here at the end of the month and sent to our casting doc in Rochester. I plan on bringing it up to him again then. I will let you know what he says. Also, Marfans was brought up due to the lack of progress after casting and the scoli and pectus ex.

When will little Nadya have her surgery? I will be saying special prayers for her (and you too!)

Thank you

JIll

Mom to

From: Crankshaw <karencrankshaw@ ymail.com>Subject: [infantile_scoliosi s] New To The GroupTo: infantile_scoliosis @yahoogroups. comDate: Saturday, February 6, 2010, 10:11 PM

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

, that is fascinating. My pectus was bad when I was in elementary school, you could say somewhat deforming, I was very, very skinny and it was obvious when the wind blew on my top or blouse. I never had a surgery, but probably would have begged my mom for it had I known! I read that it can be connected to scoli after my son was diagnosed, but I don't think he has it. Thanks for posting that! Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)To: infantile_scoliosis Sent: Mon, February 8, 2010 5:42:15 PMSubject: Re: New To The Group

Hi Jill! Thank You! The surgery is The Nuss Procedure. It is a minimally invasive surgery where they make a small incision on each side of the rid cage and slid a metal rod though under the ribs and then flip it up to pop the rib cage out in to the position that it is suppose to be in.

Nadya's procedure is being done by Dr. Chrystine Whyte at Albany Medical Center in Albany, NY. Most children's pectus aren't addressed until they are between the ages of 6 and 12. Nadya's is only 2 1/2 but her pectus has become progressively worse over time, because they don't typically do the surgery on children so small they have to have a special rod made, Nadya will be the smallest child that Dr. Whyte has ever done the procedure on.

If you don't mind me asking, is your sons pectus deep? Did they have any concerns for further deforming the rib cage in the casting process?I hope this info. was helpful.

Nadya's Mom

From: jill wienke <jillwienkeyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Mon, February 8, 2010 5:16:56 PMSubject: Re: [infantile_scoliosi s] New To The Group

Hi ,

Welcome. May I ask how they are going to fix the pectus? Who is doing it and where? My son has pectus excavatum too. At this point we haven't researched what needs to be done to address it. Thank you for any information you can offer.

Jill (Mom to , almost 4 in a brace after 2 years of casting)

From: Crankshaw <karencrankshaw@ ymail.com>Subject: [infantile_scoliosi s] New To The GroupTo: infantile_scoliosis @yahoogroups. comDate: Saturday, February 6, 2010, 10:11 PM

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

, that is fascinating. My pectus was bad when I was in elementary school, you could say somewhat deforming, I was very, very skinny and it was obvious when the wind blew on my top or blouse. I never had a surgery, but probably would have begged my mom for it had I known! I read that it can be connected to scoli after my son was diagnosed, but I don't think he has it. Thanks for posting that! Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)To: infantile_scoliosis Sent: Mon, February 8, 2010 5:42:15 PMSubject: Re: New To The Group

Hi Jill! Thank You! The surgery is The Nuss Procedure. It is a minimally invasive surgery where they make a small incision on each side of the rid cage and slid a metal rod though under the ribs and then flip it up to pop the rib cage out in to the position that it is suppose to be in.

Nadya's procedure is being done by Dr. Chrystine Whyte at Albany Medical Center in Albany, NY. Most children's pectus aren't addressed until they are between the ages of 6 and 12. Nadya's is only 2 1/2 but her pectus has become progressively worse over time, because they don't typically do the surgery on children so small they have to have a special rod made, Nadya will be the smallest child that Dr. Whyte has ever done the procedure on.

If you don't mind me asking, is your sons pectus deep? Did they have any concerns for further deforming the rib cage in the casting process?I hope this info. was helpful.

Nadya's Mom

From: jill wienke <jillwienkeyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Mon, February 8, 2010 5:16:56 PMSubject: Re: [infantile_scoliosi s] New To The Group

Hi ,

Welcome. May I ask how they are going to fix the pectus? Who is doing it and where? My son has pectus excavatum too. At this point we haven't researched what needs to be done to address it. Thank you for any information you can offer.

Jill (Mom to , almost 4 in a brace after 2 years of casting)

From: Crankshaw <karencrankshaw@ ymail.com>Subject: [infantile_scoliosi s] New To The GroupTo: infantile_scoliosis @yahoogroups. comDate: Saturday, February 6, 2010, 10:11 PM

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

[Guest guest]

Hi! Thank you very much! I'm sure it will get easier - it's just a different

way of life from others with kids Brett's age. We'll get through it, Brett has

overcome so much already - he's a pretty amazing little guy =)

Nikki

>

> I wanted to say welcome to the group and thank you for sharing your

> story. I am so sorry you have had to deal with so much since Brett

> has been born. Although casting seems overwhelming in the beginning,

> living with a child in a cast rapidly becomes normal, in an odd way.

> If the t-shirt it wet you can blow dry it with a cool setting. If the

> shirt is loose underneath you can stretch it down to make it easier

> otherwise you just do your best. We have all been there.

>

> I know casting seems a bit archaic but in reality the alternatives are

> much worse. Over time you will realize that Brett will live a very

> normal life in his cast, but it may take a while to get there. My son

> is in his 8th month in a cast and is so proud of his casts. He asks

> for them back when he gets an old one taken off! Last night he tried

> to put on an old one in the closet to change colors. We decorate it

> with mod podge and fabric and stickers to make it more fun.

>

> The beginning can be tough but hang in there it DOES get better.

>

> Jenn

> Mommy from Cole, 2 years old, 5th cast Wed!

>

[Guest guest]

Thanks Joan! It's been a tough road but we're getting through it. I'm already

enjoying reading all the posts! It's hard when all your friends and family have

children without issues - I haven't had anyone to really talk to about Brett's

problems. That's been extremely hard and isolating. My spirits have already

been lifted by reading just a handful of posts!!

Last night, I tried cleaning his undershirt with a washcloth with a little soap

on it, then blow dried it the best I could. It was drenched!!!!! The blow

dryer was really upsetting Brett and on top of that he was super tired. I was

so frustrated I couldn't hardly focus so I ended up letting him go to bed. Side

note - everytime he comes home from his Grandma's house, something is " wrong "

despite my instructions and pleas to follow them. Anyway, this morning I tried

cleaning it with his baby soap and febreeze. =) I went to buy the Cetaphil

tonight but could only find facial cleanser, have you tried that?

Thanks again!

Nikki

>

> Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much

with your baby and on top of it, lost your husband. I can't imagine the

strength you must have. We are here to help you and support you. We all know

what you are going through and have been in your shoes when it comes to casting

your child. I TOO thought that casting sounded a little barbaric, but quite the

opposite, it is gentle and slow. Your child will really adjust very quickly.

Kids are so resilient. You will get into a routine of diapering and bathing and

it will be everyday life for you and him. When my son wets on the undershirt,

we pull it down as far as we can and clean it with Cetafil soap and warm water

then blow dry the shirt on cool (don't want to burn the baby). I learned this

from the ladies on this group. They are all so helpful and wonderful. Ask any

questions and please turn to us for support

>

>

>  Joan

> mom to Hayden 3

> 43 degrees down from 62

> Cast number 3

> Treated at ish Rite Hospital

> Dallas, TX

>

>

>

>

> ________________________________

>

> To: infantile_scoliosis

> Sent: Thu, February 18, 2010 12:51:35 AM

> Subject: New to the group

>

>  

> Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he

was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of

casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

>

> Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

>

> I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

>

> Sorry to go on so long, I just wanted to get my story out there. If anyone has

any advice on how to get through this, I would really appreciate it! Brett has

just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

>

> Thanks for reading! And I appreciate any advice you have to offer.

>

> PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

>

[Guest guest]

Thanks Joan! It's been a tough road but we're getting through it. I'm already

enjoying reading all the posts! It's hard when all your friends and family have

children without issues - I haven't had anyone to really talk to about Brett's

problems. That's been extremely hard and isolating. My spirits have already

been lifted by reading just a handful of posts!!

Last night, I tried cleaning his undershirt with a washcloth with a little soap

on it, then blow dried it the best I could. It was drenched!!!!! The blow

dryer was really upsetting Brett and on top of that he was super tired. I was

so frustrated I couldn't hardly focus so I ended up letting him go to bed. Side

note - everytime he comes home from his Grandma's house, something is " wrong "

despite my instructions and pleas to follow them. Anyway, this morning I tried

cleaning it with his baby soap and febreeze. =) I went to buy the Cetaphil

tonight but could only find facial cleanser, have you tried that?

Thanks again!

Nikki

>

> Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much

with your baby and on top of it, lost your husband. I can't imagine the

strength you must have. We are here to help you and support you. We all know

what you are going through and have been in your shoes when it comes to casting

your child. I TOO thought that casting sounded a little barbaric, but quite the

opposite, it is gentle and slow. Your child will really adjust very quickly.

Kids are so resilient. You will get into a routine of diapering and bathing and

it will be everyday life for you and him. When my son wets on the undershirt,

we pull it down as far as we can and clean it with Cetafil soap and warm water

then blow dry the shirt on cool (don't want to burn the baby). I learned this

from the ladies on this group. They are all so helpful and wonderful. Ask any

questions and please turn to us for support

>

>

>  Joan

> mom to Hayden 3

> 43 degrees down from 62

> Cast number 3

> Treated at ish Rite Hospital

> Dallas, TX

>

>

>

>

> ________________________________

>

> To: infantile_scoliosis

> Sent: Thu, February 18, 2010 12:51:35 AM

> Subject: New to the group

>

>  

> Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he

was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of

casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

>

> Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

>

> I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

>

> Sorry to go on so long, I just wanted to get my story out there. If anyone has

any advice on how to get through this, I would really appreciate it! Brett has

just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

>

> Thanks for reading! And I appreciate any advice you have to offer.

>

> PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

>

[Guest guest]

Thanks Joan! It's been a tough road but we're getting through it. I'm already

enjoying reading all the posts! It's hard when all your friends and family have

children without issues - I haven't had anyone to really talk to about Brett's

problems. That's been extremely hard and isolating. My spirits have already

been lifted by reading just a handful of posts!!

Last night, I tried cleaning his undershirt with a washcloth with a little soap

on it, then blow dried it the best I could. It was drenched!!!!! The blow

dryer was really upsetting Brett and on top of that he was super tired. I was

so frustrated I couldn't hardly focus so I ended up letting him go to bed. Side

note - everytime he comes home from his Grandma's house, something is " wrong "

despite my instructions and pleas to follow them. Anyway, this morning I tried

cleaning it with his baby soap and febreeze. =) I went to buy the Cetaphil

tonight but could only find facial cleanser, have you tried that?

Thanks again!

Nikki

>

> Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much

with your baby and on top of it, lost your husband. I can't imagine the

strength you must have. We are here to help you and support you. We all know

what you are going through and have been in your shoes when it comes to casting

your child. I TOO thought that casting sounded a little barbaric, but quite the

opposite, it is gentle and slow. Your child will really adjust very quickly.

Kids are so resilient. You will get into a routine of diapering and bathing and

it will be everyday life for you and him. When my son wets on the undershirt,

we pull it down as far as we can and clean it with Cetafil soap and warm water

then blow dry the shirt on cool (don't want to burn the baby). I learned this

from the ladies on this group. They are all so helpful and wonderful. Ask any

questions and please turn to us for support

>

>

>  Joan

> mom to Hayden 3

> 43 degrees down from 62

> Cast number 3

> Treated at ish Rite Hospital

> Dallas, TX

>

>

>

>

> ________________________________

>

> To: infantile_scoliosis

> Sent: Thu, February 18, 2010 12:51:35 AM

> Subject: New to the group

>

>  

> Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he

was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of

casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

>

> Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

>

> I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

>

> Sorry to go on so long, I just wanted to get my story out there. If anyone has

any advice on how to get through this, I would really appreciate it! Brett has

just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

>

> Thanks for reading! And I appreciate any advice you have to offer.

>

> PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

>

[Guest guest]

It is frustrating that people can't follow simple directions when it comes to cast care. You should have a long talk with her, and tell her how vital it is to keep the inside of the cast dry, b/c he could have skin breakdown issues. I am sure the facial cetafil is fine, try looking at Target or Walmart for the regular one but don't worry, any soap would do, Cetafil just is so gentle it's ok if you don't get all of it rinsed off. When he is in a better mood and watching TV, then you can try the hairdryer again. So sorry Nikki. Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Fri, February 19, 2010 2:09:24 AMSubject: Re: New to the group

Thanks Joan! It's been a tough road but we're getting through it. I'm already enjoying reading all the posts! It's hard when all your friends and family have children without issues - I haven't had anyone to really talk to about Brett's problems. That's been extremely hard and isolating. My spirits have already been lifted by reading just a handful of posts!!Last night, I tried cleaning his undershirt with a washcloth with a little soap on it, then blow dried it the best I could. It was drenched!!!! ! The blow dryer was really upsetting Brett and on top of that he was super tired. I was so frustrated I couldn't hardly focus so I ended up letting him go to bed. Side note - everytime he comes home from his Grandma's house, something is "wrong" despite my instructions and pleas to follow them. Anyway, this morning I tried cleaning it with his baby soap and febreeze. =) I went to buy the Cetaphil tonight but could only find facial cleanser, have

you tried that?Thanks again!Nikki>> Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that casting sounded a little barbaric, but quite the opposite, it is gentle and slow. Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the

undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and wonderful. Ask any questions and please turn to us for support> > >  Joan> mom to Hayden 3> 43 degrees down from 62> Cast number 3> Treated at ish Rite Hospital > Dallas, TX > > > > > ____________ _________ _________ __> From: nikki062508 <nikkineary@ ...>> To: infantile_scoliosis @yahoogroups. com> Sent: Thu, February 18, 2010 12:51:35 AM> Subject: [infantile_scoliosi s] New to the group> >  > Hi! My name

is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)> > Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with

the cast even more. =(> > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!> > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. > > Thanks for reading! And I appreciate any advice you have to offer.> > PS - has anyone had a problem with their

child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!>

[Guest guest]

It is frustrating that people can't follow simple directions when it comes to cast care. You should have a long talk with her, and tell her how vital it is to keep the inside of the cast dry, b/c he could have skin breakdown issues. I am sure the facial cetafil is fine, try looking at Target or Walmart for the regular one but don't worry, any soap would do, Cetafil just is so gentle it's ok if you don't get all of it rinsed off. When he is in a better mood and watching TV, then you can try the hairdryer again. So sorry Nikki. Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Fri, February 19, 2010 2:09:24 AMSubject: Re: New to the group

Thanks Joan! It's been a tough road but we're getting through it. I'm already enjoying reading all the posts! It's hard when all your friends and family have children without issues - I haven't had anyone to really talk to about Brett's problems. That's been extremely hard and isolating. My spirits have already been lifted by reading just a handful of posts!!Last night, I tried cleaning his undershirt with a washcloth with a little soap on it, then blow dried it the best I could. It was drenched!!!! ! The blow dryer was really upsetting Brett and on top of that he was super tired. I was so frustrated I couldn't hardly focus so I ended up letting him go to bed. Side note - everytime he comes home from his Grandma's house, something is "wrong" despite my instructions and pleas to follow them. Anyway, this morning I tried cleaning it with his baby soap and febreeze. =) I went to buy the Cetaphil tonight but could only find facial cleanser, have

you tried that?Thanks again!Nikki>> Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that casting sounded a little barbaric, but quite the opposite, it is gentle and slow. Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the

undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and wonderful. Ask any questions and please turn to us for support> > >  Joan> mom to Hayden 3> 43 degrees down from 62> Cast number 3> Treated at ish Rite Hospital > Dallas, TX > > > > > ____________ _________ _________ __> From: nikki062508 <nikkineary@ ...>> To: infantile_scoliosis @yahoogroups. com> Sent: Thu, February 18, 2010 12:51:35 AM> Subject: [infantile_scoliosi s] New to the group> >  > Hi! My name

is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)> > Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with

the cast even more. =(> > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!> > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. > > Thanks for reading! And I appreciate any advice you have to offer.> > PS - has anyone had a problem with their

child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!>

[Guest guest]

Nikki,

Thanks for sharing your story! You are an amazing mother and person. I am so

sorry that your partner passed away. Brett is fortunate to have you as a mom!

Like Joan said when shirts got wet (or poopy-which seemed to happen quite often

for us) we did the same thing. We used Cetaphil or Aveeno soap. Sometimes it was

so bad we had to cut some of the shirt, I know they don't recommend doing that,

but we had to when it got really bad.

Wishing you and Brett all the best!

Mom to:

Tyler (7)

Matson (4)diagnosed at 9 mos-currently 58 thoracic/55 lumbar-casting/bracing 3

years-awaiting growing rod surgery March 24 with new MAGEC magnetic lengthening

device

Lily (3)

> >

> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so

much with your baby and on top of it, lost your husband. I can't

imagine the strength you must have. We are here to help you and support

you. We all know what you are going through and have been in your shoes when

it comes to casting your child. I TOO thought that casting sounded a little

barbaric, but quite the opposite, it is gentle and slow. Your child

will really adjust very quickly. Kids are so resilient. You will get into a

routine of diapering and bathing and it will be everyday life for you and

him. When my son wets on the undershirt, we pull it down as far as we can and

clean it with Cetafil soap and warm water then blow dry the shirt on cool

(don't want to burn the baby). I learned this from the ladies on this group.

They are all so helpful and wonderful. Ask any questions and please turn to us

for support

> >

> >

> >  Joan

> > mom to Hayden 3

> > 43 degrees down from 62

> > Cast number 3

> > Treated at ish Rite Hospital

> > Dallas, TX

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: nikki062508 <nikkineary@ ...>

> > To: infantile_scoliosis @yahoogroups. com

> > Sent: Thu, February 18, 2010 12:51:35 AM

> > Subject: [infantile_scoliosi s] New to the group

> >

> >  

> > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast -

he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day

of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> >

> > Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

> >

> > I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

> >

> > Sorry to go on so long, I just wanted to get my story out there. If anyone

has any advice on how to get through this, I would really appreciate it! Brett

has just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

> >

> > Thanks for reading! And I appreciate any advice you have to offer.

> >

> > PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

> >

>

[Guest guest]

Nikki,

Thanks for sharing your story! You are an amazing mother and person. I am so

sorry that your partner passed away. Brett is fortunate to have you as a mom!

Like Joan said when shirts got wet (or poopy-which seemed to happen quite often

for us) we did the same thing. We used Cetaphil or Aveeno soap. Sometimes it was

so bad we had to cut some of the shirt, I know they don't recommend doing that,

but we had to when it got really bad.

Wishing you and Brett all the best!

Mom to:

Tyler (7)

Matson (4)diagnosed at 9 mos-currently 58 thoracic/55 lumbar-casting/bracing 3

years-awaiting growing rod surgery March 24 with new MAGEC magnetic lengthening

device

Lily (3)

> >

> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so

much with your baby and on top of it, lost your husband. I can't

imagine the strength you must have. We are here to help you and support

you. We all know what you are going through and have been in your shoes when

it comes to casting your child. I TOO thought that casting sounded a little

barbaric, but quite the opposite, it is gentle and slow. Your child

will really adjust very quickly. Kids are so resilient. You will get into a

routine of diapering and bathing and it will be everyday life for you and

him. When my son wets on the undershirt, we pull it down as far as we can and

clean it with Cetafil soap and warm water then blow dry the shirt on cool

(don't want to burn the baby). I learned this from the ladies on this group.

They are all so helpful and wonderful. Ask any questions and please turn to us

for support

> >

> >

> >  Joan

> > mom to Hayden 3

> > 43 degrees down from 62

> > Cast number 3

> > Treated at ish Rite Hospital

> > Dallas, TX

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: nikki062508 <nikkineary@ ...>

> > To: infantile_scoliosis @yahoogroups. com

> > Sent: Thu, February 18, 2010 12:51:35 AM

> > Subject: [infantile_scoliosi s] New to the group

> >

> >  

> > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast -

he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day

of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> >

> > Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

> >

> > I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

> >

> > Sorry to go on so long, I just wanted to get my story out there. If anyone

has any advice on how to get through this, I would really appreciate it! Brett

has just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

> >

> > Thanks for reading! And I appreciate any advice you have to offer.

> >

> > PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

> >

>