Re: Return from Rochester with an early Christmas gift!!!!

[Guest guest]

That's amazing news! Great Christmas gift. Sent from my BlackBerry® wireless handheldFrom: Kauffunger <slguerra710@...>Sender: infantile scoliosis treatment Date: Thu, 8 Dec 2011 21:01:52 -0800 (PST)<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Return from Rochester with an early Christmas gift!!!! Hello Everyone!As you may know, like most of you, our journey has been long and we've had our share of bumps in the road to say the least. We left for Rochester on Monday and had several appointments scheduled for Tuesday. First up was the pulmonologist to have Noelle take a breathing test to see how her lungs are moving air after being in a brace/cast for the past 4 years. Recently, she was diagnosed with asthma by her allergist so I was glad for the test. It does confirm that she does have asthma and with her brace on, she is at about 80% in her lung function. (As far as our casting doc is concerned, for the ortho purposes this was actually a great reading.) Then off to orthotics to check on the brace, which just needed new straps. Then off to x-ray... I always look as they bring the x-ray up because I can usually tell if it's better, the same or worse from the previous visit. This time I was unsure! Isaw that there was still something, but it looked different and I couldn't put my finger on what was different. My husband was ready to throw me under the bus! lol He said "You let her out of that brace too long on some days..." So I told him that it didn't look worse to me, just that I was unsure of what i was seeing this time around. Our ortho walks in with a big smile and says,"I have some good news for you guys." I said "really?" and I explained what I saw. He said what I saw was a small lumbar curve b/t 9 and 11 degrees, BUT that her thoracic curve, the big, giant, approximately 50 degree structural curve that was the root of all evil was finally down to.... Dare I say it?! ZERO!!!!! (And it was about 10 degrees 5 months ago!) And her rotation also ZERO!!!! (There was some slight evidence of it at her last x-ray.) So he feels that this last bit of lumbarcurvature will likely improve further as well. He gave us the go ahead to discontinue the brace altogether for the next 6 months, but we were uncomfortable to go completely cold-turkey as we have had a setback in the brace before. We agreed to have her wear her brace at bedtime only for the next four months and then to remove it totally about 2 months prior to our June visit. If all goes well then, then I venture to say that we may be cured! I have longed for the day that I would hear ZERO and i wasn't sure that it would happen for us, but here it is! Miracles and dreams do come true! We were just so happy and tearful and it still hasn't hit home yet.... Still feels like I'm dreaming this! To all of you, especially those who have just started or who have been through a couple of casts and are feeling disappointed with your progress, Please please PLEASE stay strong.... This process worksand there is a light at the end of the tunnel and you WILL get to that light! My daughter is miraculous proof of that! Hugs to all of you! - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

[Guest guest]

Wow, what wonderful news! And so inspiring! Thank you for this great message...

>

> Hello Everyone!

> As you may know, like most of you, our journey has been long and we've had our

share of bumps in the road to say the least.� We left for Rochester on Monday

and had several appointments scheduled for Tuesday.� First up was the

pulmonologist to have Noelle take a breathing test to see how her lungs are

moving air after being in a brace/cast for the past 4 years.� Recently, she

was diagnosed with asthma by her allergist so I was glad for the test.� It

does confirm that she does have asthma and with her brace on, she is at about

80% in her lung function.� (As far as our casting doc is concerned, for the

ortho purposes this was actually a great reading.)� Then off to orthotics to

check on the brace, which just needed new straps.� Then off to x-ray...� I

always look as they bring the x-ray up because I can usually tell if it's

better, the same or worse from the previous visit.� This time I was unsure!�

I saw that there was still something, but it

> looked different and I couldn't put my finger on what was different.� My

husband was ready to throw me under the bus!� lol� He said " You let her out

of that brace too long on some days... " � So I told him that it didn't look

worse to me, just that I was unsure of what i was seeing this time around.�

Our ortho walks in with a big smile and says, " I have some good news for you

guys. " � I said " really? " and I explained what I saw.� He said what I saw was

a small lumbar curve b/t 9 and 11 degrees, BUT that her thoracic curve, the big,

giant,�approximately 50 degree structural curve that was the root of all evil

was finally down to....� Dare I say it?!� ZERO!!!!!� (And it was about 10

degrees�5 months ago!)� And her rotation also ZERO!!!!� (There was some

slight evidence of it at her last x-ray.)� So he feels that this last bit of

lumbar curvature will likely improve further as well.� He gave us the go ahead

to discontinue the brace altogether

> for the next 6 months, but we were uncomfortable to go completely cold-turkey

as we have had a setback in the brace before.� We agreed to have her wear

her�brace at bedtime only for the next four months and then to remove it

totally about 2 months prior to our June visit.� If all goes well then, then I

venture to say that we may be cured!� I have longed for the day that I would

hear ZERO and i wasn't sure that it would happen for us, but here it is!�

Miracles and dreams do come true!� We were just so happy and tearful and it

still hasn't hit home yet....� Still feels like I'm dreaming this!� To all

of you, especially those who have just started or who have been through a couple

of casts and are feeling disappointed with your progress, Please please

PLEASE�stay strong....� This process works and there is a light at the end

of the tunnel and you WILL get to that light!� My daughter is�miraculous

proof of that!� Hugs to all of you!�����

>

> - Noelle's mommy, 4 years old

> Rochester NY

> Casted 8 times for 1 1/2 years

> 9 months in brace

> Regressed and went into cast 9

> Back in brace at 8 degrees supine, 13 standing!

> reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity,

suspected Ehler's Danlos III

>

[Guest guest]

Congratulations, . We know how much of a journey it has been for you

and you deserve the great news.

Dave

>

> Hello Everyone!

> As you may know, like most of you, our journey has been long and we've had our

share of bumps in the road to say the least.  We left for Rochester on Monday

and had several appointments scheduled for Tuesday.  First up was the

pulmonologist to have Noelle take a breathing test to see how her lungs are

moving air after being in a brace/cast for the past 4 years.  Recently, she was

diagnosed with asthma by her allergist so I was glad for the test.  It does

confirm that she does have asthma and with her brace on, she is at about 80% in

her lung function.  (As far as our casting doc is concerned, for the ortho

purposes this was actually a great reading.)  Then off to orthotics to check on

the brace, which just needed new straps.  Then off to x-ray...  I always look as

they bring the x-ray up because I can usually tell if it's better, the same or

worse from the previous visit.  This time I was unsure!  I saw that there was

still something, but it

> looked different and I couldn't put my finger on what was different.  My

husband was ready to throw me under the bus!  lol  He said " You let her out of

that brace too long on some days... "   So I told him that it didn't look worse to

me, just that I was unsure of what i was seeing this time around.  Our ortho

walks in with a big smile and says, " I have some good news for you guys. "   I said

" really? " and I explained what I saw.  He said what I saw was a small lumbar

curve b/t 9 and 11 degrees, BUT that her thoracic curve, the big,

giant, approximately 50 degree structural curve that was the root of all evil

was finally down to....  Dare I say it?!  ZERO!!!!!  (And it was about 10

degrees 5 months ago!)  And her rotation also ZERO!!!!  (There was some slight

evidence of it at her last x-ray.)  So he feels that this last bit of lumbar

curvature will likely improve further as well.  He gave us the go ahead to

discontinue the brace altogether

> for the next 6 months, but we were uncomfortable to go completely cold-turkey

as we have had a setback in the brace before.  We agreed to have her wear

her brace at bedtime only for the next four months and then to remove it totally

about 2 months prior to our June visit.  If all goes well then, then I venture

to say that we may be cured!  I have longed for the day that I would hear ZERO

and i wasn't sure that it would happen for us, but here it is!  Miracles and

dreams do come true!  We were just so happy and tearful and it still hasn't hit

home yet....  Still feels like I'm dreaming this!  To all of you, especially

those who have just started or who have been through a couple of casts and are

feeling disappointed with your progress, Please please PLEASE stay strong.... 

This process works and there is a light at the end of the tunnel and you WILL

get to that light!  My daughter is miraculous proof of that!  Hugs to all of

you!     

>

> - Noelle's mommy, 4 years old

> Rochester NY

> Casted 8 times for 1 1/2 years

> 9 months in brace

> Regressed and went into cast 9

> Back in brace at 8 degrees supine, 13 standing!

> reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity,

suspected Ehler's Danlos III

>

[Guest guest]

So happy to hear the wonderful news. That is the best Christmas present in the world!

Jill

From: Kauffunger <slguerra710@...>Subject: Return from Rochester with an early Christmas gift!!!!infantile scoliosis treatment Date: Friday, December 9, 2011, 12:01 AM

Hello Everyone!

As you may know, like most of you, our journey has been long and we've had our share of bumps in the road to say the least. We left for Rochester on Monday and had several appointments scheduled for Tuesday. First up was the pulmonologist to have Noelle take a breathing test to see how her lungs are moving air after being in a brace/cast for the past 4 years. Recently, she was diagnosed with asthma by her allergist so I was glad for the test. It does confirm that she does have asthma and with her brace on, she is at about 80% in her lung function. (As far as our casting doc is concerned, for the ortho purposes this was actually a great reading.) Then off to orthotics to check on the brace, which just needed new straps. Then off to x-ray... I always look as they bring the x-ray up because I can usually tell if it's better, the same or worse from the previous visit. This time I was unsure! I

saw that there was still something, but it looked different and I couldn't put my finger on what was different. My husband was ready to throw me under the bus! lol He said "You let her out of that brace too long on some days..." So I told him that it didn't look worse to me, just that I was unsure of what i was seeing this time around. Our ortho walks in with a big smile and says,"I have some good news for you guys." I said "really?" and I explained what I saw. He said what I saw was a small lumbar curve b/t 9 and 11 degrees, BUT that her thoracic curve, the big, giant, approximately 50 degree structural curve that was the root of all evil was finally down to.... Dare I say it?! ZERO!!!!! (And it was about 10 degrees 5 months ago!) And her rotation also ZERO!!!! (There was some slight evidence of it at her last x-ray.) So he feels that this last bit of lumbar

curvature will likely improve further as well. He gave us the go ahead to discontinue the brace altogether for the next 6 months, but we were uncomfortable to go completely cold-turkey as we have had a setback in the brace before. We agreed to have her wear her brace at bedtime only for the next four months and then to remove it totally about 2 months prior to our June visit. If all goes well then, then I venture to say that we may be cured! I have longed for the day that I would hear ZERO and i wasn't sure that it would happen for us, but here it is! Miracles and dreams do come true! We were just so happy and tearful and it still hasn't hit home yet.... Still feels like I'm dreaming this! To all of you, especially those who have just started or who have been through a couple of casts and are feeling disappointed with your progress, Please please PLEASE stay strong.... This process works

and there is a light at the end of the tunnel and you WILL get to that light! My daughter is miraculous proof of that! Hugs to all of you! - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

[Guest guest]

I am SO EXCITED for you!  I just knew she would do well!  Give me a call sometome and tell me all about it!  Congrats! Jenn

[Guest guest]

Thank you!- Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: kfaul@... <kfaul@...>Subject: Re: Return from Rochester with an early Christmas gift!!!!infantile scoliosis treatment Date: Friday, December 9, 2011, 5:40 AM

That's amazing news! Great Christmas gift. Sent from my BlackBerry® wireless handheld

From: Kauffunger <slguerra710@...>

Sender: infantile scoliosis treatment

Date: Thu, 8 Dec 2011 21:01:52 -0800 (PST)

<infantile scoliosis treatment >

Replyinfantile scoliosis treatment

Subject: Return from Rochester with an early Christmas gift!!!!

Hello Everyone!

As you may know, like most of you, our journey has been long and we've had our share of bumps in the road to say the least. We left for Rochester on Monday and had several appointments scheduled for Tuesday. First up was the pulmonologist to have Noelle take a breathing test to see how her lungs are moving air after being in a brace/cast for the past 4 years. Recently, she was diagnosed with asthma by her allergist so I was glad for the test. It does confirm that she does have asthma and with her brace on, she is at about 80% in her lung function. (As far as our casting doc is concerned, for the ortho purposes this was actually a great reading.) Then off to orthotics to check on the brace, which just needed new straps. Then off to x-ray... I always look as they bring the x-ray up because I can usually tell if it's better, the same or worse from the previous visit. This time I was unsure! I

saw that there was still something, but it looked different and I couldn't put my finger on what was different. My husband was ready to throw me under the bus! lol He said "You let her out of that brace too long on some days..." So I told him that it didn't look worse to me, just that I was unsure of what i was seeing this time around. Our ortho walks in with a big smile and says,"I have some good news for you guys." I said "really?" and I explained what I saw. He said what I saw was a small lumbar curve b/t 9 and 11 degrees, BUT that her thoracic curve, the big, giant, approximately 50 degree structural curve that was the root of all evil was finally down to.... Dare I say it?! ZERO!!!!! (And it was about 10 degrees 5 months ago!) And her rotation also ZERO!!!! (There was some slight evidence of it at her last x-ray.) So he feels that this last bit of lumbar

curvature will likely improve further as well. He gave us the go ahead to discontinue the brace altogether for the next 6 months, but we were uncomfortable to go completely cold-turkey as we have had a setback in the brace before. We agreed to have her wear her brace at bedtime only for the next four months and then to remove it totally about 2 months prior to our June visit. If all goes well then, then I venture to say that we may be cured! I have longed for the day that I would hear ZERO and i wasn't sure that it would happen for us, but here it is! Miracles and dreams do come true! We were just so happy and tearful and it still hasn't hit home yet.... Still feels like I'm dreaming this! To all of you, especially those who have just started or who have been through a couple of casts and are feeling disappointed with your progress, Please please PLEASE stay strong.... This process works

and there is a light at the end of the tunnel and you WILL get to that light! My daughter is miraculous proof of that! Hugs to all of you! - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

[Guest guest]

Thank you and you are welcome! I'm hoping that it does bring hope to a lot of families that are going through this..... - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: bessrattray@... <bessrny@...>Subject: Re: Return from Rochester with an early Christmas gift!!!!infantile scoliosis treatment Date: Friday, December 9, 2011, 1:57 PM

Wow, what wonderful news! And so inspiring! Thank you for this great message...>> Hello Everyone!> As you may know, like most of you, our journey has been long and we've had our share of bumps in the road to say the least.� We left for Rochester on Monday and had several appointments scheduled for Tuesday.� First up was the pulmonologist to have Noelle take a breathing test to see how her lungs are moving air after being in a brace/cast for the past 4 years.� Recently, she was diagnosed with asthma by her allergist so I was glad for the test.� It does confirm that she does have asthma and with her brace on, she is at about 80% in

her lung function.� (As far as our casting doc is concerned, for the ortho purposes this was actually a great reading.)� Then off to orthotics to check on the brace, which just needed new straps.� Then off to x-ray...� I always look as they bring the x-ray up because I can usually tell if it's better, the same or worse from the previous visit.� This time I was unsure!� I saw that there was still something, but it> looked different and I couldn't put my finger on what was different.� My husband was ready to throw me under the bus!� lol� He said "You let her out of that brace too long on some days..."� So I told him that it didn't look worse to me, just that I was unsure of what i was seeing this time around.� Our ortho walks in with a big smile and says,"I have some good news for you guys."� I said "really?" and I explained what I saw.� He said what I saw was a small lumbar curve b/t

9 and 11 degrees, BUT that her thoracic curve, the big, giant,�approximately 50 degree structural curve that was the root of all evil was finally down to....� Dare I say it?!� ZERO!!!!!� (And it was about 10 degrees�5 months ago!)� And her rotation also ZERO!!!!� (There was some slight evidence of it at her last x-ray.)� So he feels that this last bit of lumbar curvature will likely improve further as well.� He gave us the go ahead to discontinue the brace altogether> for the next 6 months, but we were uncomfortable to go completely cold-turkey as we have had a setback in the brace before.� We agreed to have her wear her�brace at bedtime only for the next four months and then to remove it totally about 2 months prior to our June visit.� If all goes well then, then I venture to say that we may be cured!� I have longed for the day that I would hear ZERO and i wasn't sure that it would

happen for us, but here it is!� Miracles and dreams do come true!� We were just so happy and tearful and it still hasn't hit home yet....� Still feels like I'm dreaming this!� To all of you, especially those who have just started or who have been through a couple of casts and are feeling disappointed with your progress, Please please PLEASE�stay strong....� This process works and there is a light at the end of the tunnel and you WILL get to that light!� My daughter is�miraculous proof of that!� Hugs to all of you!�����> > - Noelle's mommy, 4 years old> Rochester NY> Casted 8 times for 1 1/2 years> 9 months in brace> Regressed and went into cast 9> Back in brace at 8 degrees supine, 13 standing! > reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos

III>

[Guest guest]

Thank you very much!- Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: D <difleishman@...>Subject: Re: Return from Rochester with an early Christmas gift!!!!infantile scoliosis treatment Date: Friday, December 9, 2011, 3:16 PM

Congratulations, . We know how much of a journey it has been for you and you deserve the great news.Dave>> Hello Everyone!> As you may know, like most of you, our journey has been long and we've had our share of bumps in the road to say the least. We left for Rochester on Monday and had several appointments scheduled for Tuesday. First up was the pulmonologist to have Noelle take a breathing test to see how her lungs are moving air after being in a brace/cast for the past 4 years. Recently, she was diagnosed with asthma by her allergist so I was glad for the test. It does confirm that she does have asthma and

with her brace on, she is at about 80% in her lung function. (As far as our casting doc is concerned, for the ortho purposes this was actually a great reading.) Then off to orthotics to check on the brace, which just needed new straps. Then off to x-ray... I always look as they bring the x-ray up because I can usually tell if it's better, the same or worse from the previous visit. This time I was unsure! I saw that there was still something, but it> looked different and I couldn't put my finger on what was different. My husband was ready to throw me under the bus! lol He said "You let her out of that brace too long on some days..." So I told him that it didn't look worse to me, just that I was unsure of what i was seeing this time around. Our ortho walks in with a big smile and says,"I have some good news for you guys." I said "really?" and I explained what I saw. He

said what I saw was a small lumbar curve b/t 9 and 11 degrees, BUT that her thoracic curve, the big, giant, approximately 50 degree structural curve that was the root of all evil was finally down to.... Dare I say it?! ZERO!!!!! (And it was about 10 degrees 5 months ago!) And her rotation also ZERO!!!! (There was some slight evidence of it at her last x-ray.) So he feels that this last bit of lumbar curvature will likely improve further as well. He gave us the go ahead to discontinue the brace altogether> for the next 6 months, but we were uncomfortable to go completely cold-turkey as we have had a setback in the brace before. We agreed to have her wear her brace at bedtime only for the next four months and then to remove it totally about 2 months prior to our June visit. If all goes well then, then I venture to say that we may be cured! I have longed for the day that I

would hear ZERO and i wasn't sure that it would happen for us, but here it is! Miracles and dreams do come true! We were just so happy and tearful and it still hasn't hit home yet.... Still feels like I'm dreaming this! To all of you, especially those who have just started or who have been through a couple of casts and are feeling disappointed with your progress, Please please PLEASE stay strong.... This process works and there is a light at the end of the tunnel and you WILL get to that light! My daughter is miraculous proof of that! Hugs to all of you! > > - Noelle's mommy, 4 years old> Rochester NY> Casted 8 times for 1 1/2 years> 9 months in brace> Regressed and went into cast 9> Back in brace at 8 degrees supine, 13 standing! > reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity,

suspected Ehler's Danlos III>

[Guest guest]

Thank you Jill! It's so good to hear from you! How is doing? We need to catch up... I'll try to call you this week. Hugs!- Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: Kauffunger <slguerra710@...>Subject: Return from Rochester with an early Christmas gift!!!!infantile scoliosis treatment Date: Friday, December 9, 2011, 12:01 AM

Hello Everyone!

As you may know, like most of you, our journey has been long and we've had our share of bumps in the road to say the least. We left for Rochester on Monday and had several appointments scheduled for Tuesday. First up was the pulmonologist to have Noelle take a breathing test to see how her lungs are moving air after being in a brace/cast for the past 4 years. Recently, she was diagnosed with asthma by her allergist so I was glad for the test. It does confirm that she does have asthma and with her brace on, she is at about 80% in her lung function. (As far as our casting doc is concerned, for the ortho purposes this was actually a great reading.) Then off to orthotics to check on the brace, which just needed new straps. Then off to x-ray... I always look as they bring the x-ray up because I can usually tell if it's better, the same or worse from the previous visit. This time I was unsure! I

saw that there was still something, but it looked different and I couldn't put my finger on what was different. My husband was ready to throw me under the bus! lol He said "You let her out of that brace too long on some days..." So I told him that it didn't look worse to me, just that I was unsure of what i was seeing this time around. Our ortho walks in with a big smile and says,"I have some good news for you guys." I said "really?" and I explained what I saw. He said what I saw was a small lumbar curve b/t 9 and 11 degrees, BUT that her thoracic curve, the big, giant, approximately 50 degree structural curve that was the root of all evil was finally down to.... Dare I say it?! ZERO!!!!! (And it was about 10 degrees 5 months ago!) And her rotation also ZERO!!!! (There was some slight evidence of it at her last x-ray.) So he feels that this last bit of lumbar

curvature will likely improve further as well. He gave us the go ahead to discontinue the brace altogether for the next 6 months, but we were uncomfortable to go completely cold-turkey as we have had a setback in the brace before. We agreed to have her wear her brace at bedtime only for the next four months and then to remove it totally about 2 months prior to our June visit. If all goes well then, then I venture to say that we may be cured! I have longed for the day that I would hear ZERO and i wasn't sure that it would happen for us, but here it is! Miracles and dreams do come true! We were just so happy and tearful and it still hasn't hit home yet.... Still feels like I'm dreaming this! To all of you, especially those who have just started or who have been through a couple of casts and are feeling disappointed with your progress, Please please PLEASE stay strong.... This process works

and there is a light at the end of the tunnel and you WILL get to that light! My daughter is miraculous proof of that! Hugs to all of you! - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

[Guest guest]

Jenn.... It was just AMAZING!!!!! Can't wait to talk to you all about it.... I'm just giddy!- Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: Leggett <jennifer.leggett@...>Subject: Re: Return from Rochester with an early Christmas gift!!!!infantile scoliosis treatment Date: Saturday, December 10, 2011, 2:04 AM

I am SO EXCITED for you! I just knew she would do well! Give me a call sometome and tell me all about it! Congrats! Jenn

[Guest guest]

That is truely the best Christmas gift EVER! What wonderful news just in time for the holidays:) I am so happy for your family.TameSent from my iPhoneOn Dec 8, 2011, at 11:01 PM, Kauffunger <slguerra710@...> wrote:

Hello Everyone!

As you may know, like most of you, our journey has been long and we've had our share of bumps in the road to say the least. We left for Rochester on Monday and had several appointments scheduled for Tuesday. First up was the pulmonologist to have Noelle take a breathing test to see how her lungs are moving air after being in a brace/cast for the past 4 years. Recently, she was diagnosed with asthma by her allergist so I was glad for the test. It does confirm that she does have asthma and with her brace on, she is at about 80% in her lung function. (As far as our casting doc is concerned, for the ortho purposes this was actually a great reading.) Then off to orthotics to check on the brace, which just needed new straps. Then off to x-ray... I always look as they bring the x-ray up because I can usually tell if it's better, the same or worse from the previous visit. This time I was unsure! I

saw that there was still something, but it looked different and I couldn't put my finger on what was different. My husband was ready to throw me under the bus! lol He said "You let her out of that brace too long on some days..." So I told him that it didn't look worse to me, just that I was unsure of what i was seeing this time around. Our ortho walks in with a big smile and says,"I have some good news for you guys." I said "really?" and I explained what I saw. He said what I saw was a small lumbar curve b/t 9 and 11 degrees, BUT that her thoracic curve, the big, giant, approximately 50 degree structural curve that was the root of all evil was finally down to.... Dare I say it?! ZERO!!!!! (And it was about 10 degrees 5 months ago!) And her rotation also ZERO!!!! (There was some slight evidence of it at her last x-ray.) So he feels that this last bit of lumbar

curvature will likely improve further as well. He gave us the go ahead to discontinue the brace altogether for the next 6 months, but we were uncomfortable to go completely cold-turkey as we have had a setback in the brace before. We agreed to have her wear her brace at bedtime only for the next four months and then to remove it totally about 2 months prior to our June visit. If all goes well then, then I venture to say that we may be cured! I have longed for the day that I would hear ZERO and i wasn't sure that it would happen for us, but here it is! Miracles and dreams do come true! We were just so happy and tearful and it still hasn't hit home yet.... Still feels like I'm dreaming this! To all of you, especially those who have just started or who have been through a couple of casts and are feeling disappointed with your progress, Please please PLEASE stay strong.... This process works

and there is a light at the end of the tunnel and you WILL get to that light! My daughter is miraculous proof of that! Hugs to all of you! - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

[Guest guest]

Dear ,

What a great way to start out 2012! You have been down a very long road

and it's so fabulous to hear that there is a very bright light at the end

of the tunnel. Please pat yourself on the back for doing your research,

staying the course and ensuring that lil Noelle grows up straight and

strong.I'm so happy for you! Thanks for sharing and please continue to

keep us posted.

Warmly,

HRH

Hello Everyone!

> As you may know, like most of you, our journey has been long and we've had

> our share of bumps in the road to say the least.  We left for Rochester on

> Monday and had several appointments scheduled for Tuesday.  First up was

> the pulmonologist to have Noelle take a breathing test to see how her

> lungs are moving air after being in a brace/cast for the past 4 years. 

> Recently, she was diagnosed with asthma by her allergist so I was glad for

> the test.  It does confirm that she does have asthma and with her brace

> on, she is at about 80% in her lung function.  (As far as our casting doc

> is concerned, for the ortho purposes this was actually a great reading.) 

> Then off to orthotics to check on the brace, which just needed new

> straps.  Then off to x-ray...  I always look as they bring the x-ray up

> because I can usually tell if it's better, the same or worse from the

> previous visit.  This time I was unsure!  I saw that there was still

> something, but it

> looked different and I couldn't put my finger on what was different.  My

> husband was ready to throw me under the bus!  lol  He said " You let her

> out of that brace too long on some days... "   So I told him that it didn't

> look worse to me, just that I was unsure of what i was seeing this time

> around.  Our ortho walks in with a big smile and says, " I have some good

> news for you guys. "   I said " really? " and I explained what I saw.  He

> said what I saw was a small lumbar curve b/t 9 and 11 degrees, BUT that

> her thoracic curve, the big, giant, approximately 50 degree structural

> curve that was the root of all evil was finally down to....  Dare I say

> it?!  ZERO!!!!!  (And it was about 10 degrees 5 months ago!)  And her

> rotation also ZERO!!!!  (There was some slight evidence of it at her last

> x-ray.)  So he feels that this last bit of lumbar curvature will likely

> improve further as well.  He gave us the go ahead to discontinue the

> brace altogether

> for the next 6 months, but we were uncomfortable to go completely

> cold-turkey as we have had a setback in the brace before.  We agreed to

> have her wear her brace at bedtime only for the next four months and then

> to remove it totally about 2 months prior to our June visit.  If all goes

> well then, then I venture to say that we may be cured!  I have longed for

> the day that I would hear ZERO and i wasn't sure that it would happen for

> us, but here it is!  Miracles and dreams do come true!  We were just so

> happy and tearful and it still hasn't hit home yet....  Still feels like

> I'm dreaming this!  To all of you, especially those who have just started

> or who have been through a couple of casts and are feeling disappointed

> with your progress, Please please PLEASE stay strong....  This process

> works and there is a light at the end of the tunnel and you WILL get to

> that light!  My daughter is miraculous proof of that!  Hugs to all of

> you!     

>

> - Noelle's mommy, 4 years old

> Rochester NY

> Casted 8 times for 1 1/2 years

> 9 months in brace

> Regressed and went into cast 9

> Back in brace at 8 degrees supine, 13 standing!

> reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity,

> suspected Ehler's Danlos III

[Guest guest]

Thank you so much ! - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: heather@... <heather@...>Subject: Re: Return from Rochester with an early Christmas gift!!!!infantile scoliosis treatment Date: Monday, December 12, 2011, 10:22 PM

Dear ,What a great way to start out 2012! You have been down a very long roadand it's so fabulous to hear that there is a very bright light at the endof the tunnel. Please pat yourself on the back for doing your research,staying the course and ensuring that lil Noelle grows up straight andstrong.I'm so happy for you! Thanks for sharing and please continue tokeep us posted.Warmly,HRHHello Everyone!> As you may know, like most of you, our journey has been long and we've had> our share of bumps in the road to say the least. We left for Rochester on> Monday and had several appointments scheduled for Tuesday. First up was> the pulmonologist to have Noelle take a breathing test to see how her> lungs are moving air after being in a brace/cast for the past 4 years. > Recently, she was diagnosed with asthma by her allergist so I was glad for>

the test. It does confirm that she does have asthma and with her brace> on, she is at about 80% in her lung function. (As far as our casting doc> is concerned, for the ortho purposes this was actually a great reading.) > Then off to orthotics to check on the brace, which just needed new> straps. Then off to x-ray... I always look as they bring the x-ray up> because I can usually tell if it's better, the same or worse from the> previous visit. This time I was unsure! I saw that there was still> something, but it> looked different and I couldn't put my finger on what was different. My> husband was ready to throw me under the bus! lol He said "You let her> out of that brace too long on some days..." So I told him that it didn't> look worse to me, just that I was unsure of what i was seeing this time>

around. Our ortho walks in with a big smile and says,"I have some good> news for you guys." I said "really?" and I explained what I saw. He> said what I saw was a small lumbar curve b/t 9 and 11 degrees, BUT that> her thoracic curve, the big, giant, approximately 50 degree structural> curve that was the root of all evil was finally down to.... Dare I say> it?! ZERO!!!!! (And it was about 10 degrees 5 months ago!) And her> rotation also ZERO!!!! (There was some slight evidence of it at her last> x-ray.) So he feels that this last bit of lumbar curvature will likely> improve further as well. He gave us the go ahead to discontinue the> brace altogether> for the next 6 months, but we were uncomfortable to go completely> cold-turkey as we have had a setback in the brace before. We agreed to> have her

wear her brace at bedtime only for the next four months and then> to remove it totally about 2 months prior to our June visit. If all goes> well then, then I venture to say that we may be cured! I have longed for> the day that I would hear ZERO and i wasn't sure that it would happen for> us, but here it is! Miracles and dreams do come true! We were just so> happy and tearful and it still hasn't hit home yet.... Still feels like> I'm dreaming this! To all of you, especially those who have just started> or who have been through a couple of casts and are feeling disappointed> with your progress, Please please PLEASE stay strong.... This process> works and there is a light at the end of the tunnel and you WILL get to> that light! My daughter is miraculous proof of that! Hugs to all of>

you! >> - Noelle's mommy, 4 years old> Rochester NY> Casted 8 times for 1 1/2 years> 9 months in brace> Regressed and went into cast 9> Back in brace at 8 degrees supine, 13 standing!> reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity,> suspected Ehler's Danlos III