RE: steph

[Guest guest]

Please wash/send the lg. vest back to ISOP and I will replace it with

a small. I can send one in the mail, today. Sorry, about sending you

all large vests.. Its been a while since I have had a baby in the

house and apparently my size estimations are way off. Oops...

HRH

Hi all-I hope you are

enjoying your long holiday weekend!

> I was wondering if anyone has had a problem with the cooling vest

getting your child wet?

> First off this is our 2nd one because we needed a smaller size. We

used the smaller one today and I noticed after I took it off the

back of his brace shirt was wet. I did notice that the white fabric(I

suppose this fabric absorbs the water) inside the pockets is only on

the outside-in the pocket.......not on the backside of the pocket

where it would be up against the child's back. Should it be? Does

this make any sense?

> This one is a little different than the first one so I didn't know

if you guys had changed some stuff and this is an older version.

> Anyway just wondered if this is going to work without getting him

wet every time we use it.

> Any thoughts would be greatly appreciated by those of you that have

used one.

> And , Shara or Rochelle if this makes no sense to you please

feel free to call me and I can try to explain better.

>

> Tasha

> Mommy of twin boys- and 3 years old

> Fort Worth, Texas

> is currently in a brace-8 degrees out of brace!!

>

[Guest guest]

Not a problem!!!!! I thinkI'll keep it for next summer and just pay you for the new one, if that's okay with you? I'm sure she'll need the larger size for next summer.... Stephhrhandco wrote: Please wash/send the lg. vest back to ISOP and I will replace it witha small. I can send one in the mail, today. Sorry, about sending youall large vests.. Its been a while since I have had a baby in thehouse and apparently my size estimations are way off. Oops...HRH Hi all-I hope you areenjoying your long holiday weekend!> I was wondering if anyone has had a problem with the cooling vestgetting your child wet? > First off this is our 2nd one because we needed a smaller size. Weused the smaller one today and I noticed after I took it off theback of his brace shirt was wet. I did notice that the white fabric(Isuppose this fabric absorbs the water) inside the pockets is only onthe outside-in the pocket.......not on the backside of the pocketwhere it would

be up against the child's back. Should it be? Doesthis make any sense? > This one is a little different than the first one so I didn't knowif you guys had changed some stuff and this is an older version. > Anyway just wondered if this is going to work without getting himwet every time we use it.> Any thoughts would be greatly appreciated by those of you that haveused one.> And , Shara or Rochelle if this makes no sense to you pleasefeel free to call me and I can try to explain better.> > Tasha> Mommy of twin boys- and 3 years old> Fort Worth, Texas> is currently in a brace-8 degrees out of brace!!>

[Guest guest]

Hi Steph,

We just got our pool up in the backyard (7

days of hard labor!), so she can swim all day, everyday. Its 4 ft tall, 20 ft,

around. Olivia is 4’2, so it works perfectly. Tried swimming for the 1st

time yesterday, but the water is still too cold. We have 2 solar covers on

top, so hopefully we can swim in a warm pool by weeks end.

Thanks Steph.

HRH

First Trip to Denver

I can't believe the time is finally

nearing. We leave Wednesday, the 11th for Denver. It will be an 8 hour drive

for us. Thank goodness for DVD players. Toby is seeing Dr. son Thursday

morning and is scheduled for his first cast Friday. I just pray I can get

through this. It has been a long road to get to this point. Any suggestions of

what to be prepared for or things I need to take w/ us??? Keep us in your

prayers.

Belinda & Toby (soon to be 3,

June 20)

[Guest guest]

That pool sounds AWESOME!!!! I would love my own.... Maybe we'll invest after my little turtle comes out of her shell! LOL I hope Liv has a great summer swimming around and, hopefully, the added bonus of working her lungs out in a really fun way!!!!! Enjoy it! (I'm a little jealous!) Steph Hyatt wrote: Hi

Steph, We just got our pool up in the backyard (7 days of hard labor!), so she can swim all day, everyday. Its 4 ft tall, 20 ft, around. Olivia is 4’2, so it works perfectly. Tried swimming for the 1st time yesterday, but the water is still too cold. We have 2 solar covers on top, so hopefully we can swim in a warm pool by weeks end. Thanks Steph. HRH First Trip to Denver I can't believe the time is finally nearing. We leave Wednesday, the 11th for Denver. It will be an 8 hour drive for us. Thank goodness for DVD players. Toby is seeing Dr. son Thursday morning and is scheduled for his first cast Friday. I just pray I can get through this. It has been a long road to get to this point. Any suggestions of what to be prepared for or things I need to take w/ us??? Keep us in your prayers. Belinda & Toby (soon to be 3, June 20)

[Guest guest]

This is for Shauna I think?

Subject: stephTo: infantile_scoliosis Date: Monday, July 14, 2008, 10:48 PM

Definately give the doc a call and perhaps you can arrange that the rib flaps are trimmed down a bit at a local ortho's office...? Let us know.HRH

[Guest guest]

Thanks, Steph.

There is an ISOP photo release in the FILES section of the group that

you can download/print/sign/send at your convenience. The addy is:

C.P. of Colorado

Attn: ISOP

801 Yosemite St.

Den. CO.

80230

Thanks for your willingness to participate!

Here's to a great cast/jacket in Rochester! Please post when you get

back.

Sincerely,

HRH

> >

> > Just wondering if anybody has the address to send the pics for the

> > conference in Sept. I sent some pics to :

> > C.P. Of Colorado

> > Attn: ISOP

> > 801 Yosemite St

> > Denver, CO 80230

> >

> > BUT i got them back saying attempted, not known and a note

saying: not

> > at this address. And I can't find the correct address to send

them to.

> > So, if anybody has it, can they please share. The pics i think

need to

> > be in by Aug. 1st, so i have to get them out soon. Thanks!

> > Shauna

> >

>

[Guest guest]

,

My printer is broken... So, if you could possibly send it to me that would be so great... Let me know. Steph

Subject: Re: StephTo: infantile_scoliosis Date: Monday, July 21, 2008, 2:27 PM

Thanks, Steph.There is an ISOP photo release in the FILES section of the group that you can download/print/ sign/send at your convenience. The addy is:C.P. of ColoradoAttn: ISOP801 Yosemite St.Den. CO.80230Thanks for your willingness to participate!Here's to a great cast/jacket in Rochester! Please post when you get back.Sincerely,HRH> >> > Just wondering if anybody has the address to send the pics for the> > conference in Sept. I sent some pics to :> > C.P. Of Colorado> > Attn: ISOP> > 801 Yosemite St> > Denver, CO 80230> > > > BUT i got them back saying attempted, not known and a note saying: not> > at this address. And I can't find the correct address to send them to.> > So, if anybody has it, can they please share. The pics i think need to> > be in by Aug. 1st, so i have to get them out soon. Thanks!> > Shauna> >>

[Guest guest]

And,

as we become more established, perhaps these rules will change.

**Your’e exactly right, Steph.

As successful organizations grow and evolve, rules change. ISOP will

continue to evolve and our role may change within the next 10 years. Although,

I expect patient advocacy to always be a big part of our mission.

When I

come to this group, I find hope... It has been some days since I have

felt that. I just wanted to say that regardless of our differences about

the rules that are currently in place, I hope that we can respect them and get

back to what this group is really about.... I really miss it!!!!

**Me, too! There is still hope and I am grateful that

you all help to provide it to new members. We are all in this together.

Or, that’s how I choose to see it, anyway……

Re:

doc's names

Well said Steph.

Ditto for me.

((Hug)) ((Hug)) to everyone!

doc's names

Hi

All....

I'm

jumping into this conversation a little late in the game.... And with

tears in my eyes. I've been a member about a year now and have found

tremendous support here. It saddens me that we are talking about

" unsubscribing " and " removing " members and it seems like

we are starting to attack each other. I think we are all concerned moms

in a similar boat looking, sometimes in desperation, for some guidance.

I think we found it here. I wish we also could mention names freely and

I believe that said in a previous post that we could provide new moms

with the names and contact info for Mehta docs in their area in order to save

them time. I don't think it has ever been said that we could not

vent/complain/make negative comments about our experiences. For

example, many of you know that I take Noelle to Rochester for

casting.... I could say something like, " Noelle's doc at Rochester

really upset me this time because..... " without saying his

name. Many of us already know who those docs are and anyone who also

sees a doc at that facility could e-mail me off-line for more details if they

wanted to know. I agree that we need to agree to disagree....

And, as we become more established, perhaps these rules will change.

While it may take me an extra minute or two right now to remember to revise

the way I write my posts, I think in a few days/weeks it will become second

nature. I also don't think that if a member is speaking very positivley

about their experience and a mom asks simply " Who do you

see? " And we supply the contact info. again... Well, I doubt

that anyone would be kicked off for that. I count on all of you

for support and guidance. I read every post, even if I don't respond to

them all. I have prayed for all of you and have been prayed for.

I have laughed at some of your stories and shed tears over others.

When I come to this group, I find hope... It has been some days since I

have felt that. I just wanted to say that regardless of our differences

about the rules that are currently in place, I hope that we can respect them

and get back to what this group is really about.... I really miss

it!!!!

With

Hope, Steph

[Guest guest]

Hi Steph:

We only had 2 casts--which is what Dr. Mehta recommended--our daughter is a bit different though. But I think it goes with the each child is different theory. She is very flexible. They put her to zero in each cast.

She wore each cast 12 weeks and was in cast for 6 months. She's doing fine so far--if that helps.

E

From: infantile_scoliosis [infantile_scoliosis ] On Behalf Of hrhandco [heather@...]

Sent: Sunday, July 27, 2008 8:03 AM

To: infantile_scoliosis

Subject: steph

Hi ,

Thanks for letting me know I'm not alone!!!!

You raised an interesting point for me in your previous post about

early cast removal.... If the child is under 10 degrees and is

considered a candidate for bracing, etc., but the cast has only been

on 4-6 months, is it premature to remove the cast? Or if the numbers

are there is it counter-productive to keep it on? I'm very concerned

about this.... Wish we could have talked about this sooner.... It's

on my list of items to discuss with the casting doc already and it's

like you read my mind!!!! We leave tomorrow.... I'd love to know

your thoughts on this. I'm a little scared to start bracing this

early if we go back and her numbers are under 10 degrees.... Thus

far, I haven't heard of anyone only having 2 casts.....

I know you read the post before sending them through and this is a

bit of a breach of netiquette, but if you have the chance before

Monday morning, my cell is ... You can edit out my number if you

like (or not).. Maybe you some insights about this that will better

prepare me to ask questions at her consultation. If you have the

time, I appreciate it!!!! Thanks, Steph

[Guest guest]

Thanks again..... I will use that tip! Steph

Subject: StephTo: infantile_scoliosis Date: Thursday, September 11, 2008, 4:13 AM

Sorry that was aimed at the group and you were not jumping in.This site has a great search engine. There are like 24000 posts all you have to do is type any word and it brings up those posts. I use it to answer alot of question and to read about simular ideas. lets say you typed in flossing or neoprene or showering or swimming it will bring up every post pertaining to that item. The funny thing about not using Docs names anymore you really dont have too their already here!Try it you can find anything you want?Darrell

[Guest guest]

Thanks.... I will read that story and familiarize myself if I need to travel further!!!!!! Thanks! Steph

Subject: RE: StephTo: infantile_scoliosis Date: Wednesday, September 17, 2008, 4:36 PM

Steph,

Please don¢t worry too much, until you know exactly what is going on. Easier said than done, I know. Just cross that bridge when you get to it. If it ends up being hip dysplasia, we can put you in touch with Lily¢s mum. Please read Lily¢s Story on the group, if you haven¢t already. Lily also had hip dysplasia and the doc was able to make a specialized jacket that addressed both issues at the same time, and both issues resolved. As far as I know, this was the 1st jacket ever made that could address both issues, properly and simultaneously.

Hang in there.

HRH

[infantile_scoliosi s] popping noises #2

Hi All,

I spoke with the secretary at Rochester today about the clicking noises in Noelle's hip area.... I really don't know if it is her hip or the cast.... She said if it's the cast then the doc isn't concerned based on the info that I gave. However, if it's her hip that is clicking, she could have developed hip dysplasia which she said would be very rare.... that usually occurs in much younger kids or it could be a misallignment in her hips. If the misalignment is mild it could be corrected through special shoes, but if it's moderate/severe the treatment usually involves casting the hips..... I could just cry!!! They don't need to see her earlier since we go in 2 weeks anyway, but I scheduled an appointment with her pediatrician for this Thursday to check her over. At least it might give me an idea as to what I'm dealing

with.... Does anyone know of a child who developed these problems after casting started? PLEASE pray it's the cast!!!! I don't know what I would do if her hips had to be casted also........ Steph

[Guest guest]

,

I don't know much about hip dysplasia, but just wanted to say we're thinking of you and will pray that it's just the cast!

Jay

From: Hyatt <heather@infantilesc oliosis.org>Subject: RE: [infantile_scoliosi s] StephTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, September 17, 2008, 4:36 PM

Steph,

Please don¢t worry too much, until you know exactly what is going on. Easier said than done, I know. Just cross that bridge when you get to it. If it ends up being hip dysplasia, we can put you in touch with Lily¢s mum. Please read Lily¢s Story on the group, if you haven¢t already. Lily also had hip dysplasia and the doc was able to make a specialized jacket that addressed both issues at the same time, and both issues resolved. As far as I know, this was the 1st jacket ever made that could address both issues, properly and simultaneously.

Hang in there.

HRH

[infantile_scoliosi s] popping noises #2

Hi All,

I spoke with the secretary at Rochester today about the clicking noises in Noelle's hip area.... I really don't know if it is her hip or the cast.... She said if it's the cast then the doc isn't concerned based on the info that I gave. However, if it's her hip that is clicking, she could have developed hip dysplasia which she said would be very rare.... that usually occurs in much younger kids or it could be a misallignment in her hips. If the misalignment is mild it could be corrected through special shoes, but if it's moderate/severe the treatment usually involves casting the hips..... I could just cry!!! They don't need to see her earlier since we go in 2 weeks anyway, but I scheduled an appointment with her pediatrician for this Thursday to check her over. At least it might give me an idea as to what I'm dealing

with.... Does anyone know of a child who developed these problems after casting started? PLEASE pray it's the cast!!!! I don't know what I would do if her hips had to be casted also........ Steph

[Guest guest]

,

I don't know much about hip dysplasia, but just wanted to say we're thinking of you and will pray that it's just the cast!

Jay

From: Hyatt <heather@infantilesc oliosis.org>Subject: RE: [infantile_scoliosi s] StephTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, September 17, 2008, 4:36 PM

Steph,

Please don¢t worry too much, until you know exactly what is going on. Easier said than done, I know. Just cross that bridge when you get to it. If it ends up being hip dysplasia, we can put you in touch with Lily¢s mum. Please read Lily¢s Story on the group, if you haven¢t already. Lily also had hip dysplasia and the doc was able to make a specialized jacket that addressed both issues at the same time, and both issues resolved. As far as I know, this was the 1st jacket ever made that could address both issues, properly and simultaneously.

Hang in there.

HRH

[infantile_scoliosi s] popping noises #2

Hi All,

I spoke with the secretary at Rochester today about the clicking noises in Noelle's hip area.... I really don't know if it is her hip or the cast.... She said if it's the cast then the doc isn't concerned based on the info that I gave. However, if it's her hip that is clicking, she could have developed hip dysplasia which she said would be very rare.... that usually occurs in much younger kids or it could be a misallignment in her hips. If the misalignment is mild it could be corrected through special shoes, but if it's moderate/severe the treatment usually involves casting the hips..... I could just cry!!! They don't need to see her earlier since we go in 2 weeks anyway, but I scheduled an appointment with her pediatrician for this Thursday to check her over. At least it might give me an idea as to what I'm dealing

with.... Does anyone know of a child who developed these problems after casting started? PLEASE pray it's the cast!!!! I don't know what I would do if her hips had to be casted also........ Steph

[Guest guest]

Thanks.... me too! Steph

From: Hyatt <heather@infantilesc oliosis.org>Subject: RE: [infantile_scoliosi s] StephTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, September 17, 2008, 4:36 PM

Steph,

Please don¢t worry too much, until you know exactly what is going on. Easier said than done, I know. Just cross that bridge when you get to it. If it ends up being hip dysplasia, we can put you in touch with Lily¢s mum. Please read Lily¢s Story on the group, if you haven¢t already. Lily also had hip dysplasia and the doc was able to make a specialized jacket that addressed both issues at the same time, and both issues resolved. As far as I know, this was the 1st jacket ever made that could address both issues, properly and simultaneously.

Hang in there.

HRH

[infantile_scoliosi s] popping noises #2

Hi All,

I spoke with the secretary at Rochester today about the clicking noises in Noelle's hip area.... I really don't know if it is her hip or the cast.... She said if it's the cast then the doc isn't concerned based on the info that I gave. However, if it's her hip that is clicking, she could have developed hip dysplasia which she said would be very rare.... that usually occurs in much younger kids or it could be a misallignment in her hips. If the misalignment is mild it could be corrected through special shoes, but if it's moderate/severe the treatment usually involves casting the hips..... I could just cry!!! They don't need to see her earlier since we go in 2 weeks anyway, but I scheduled an appointment with her pediatrician for this Thursday to check her over. At least it might give me an idea as to what I'm dealing

with.... Does anyone know of a child who developed these problems after casting started? PLEASE pray it's the cast!!!! I don't know what I would do if her hips had to be casted also........ Steph

[Guest guest]

Hi Jill!

We are very sick here, so we will try keeping our December 14th - 17th plans for now.... I have bronchitis and a raging stomach virus AND the Shingles all at once!!! How's that for a trifecta! And, my husband has the stomach virus as well.... Noelle is sneezing, but no other problems now, knock on wood. It's been 2 weeks since I've felt well and I need the extra time, unfortunately, because Noelle's stomach is so prego now in the cast when she eats.... She's having a bit of a tough time seeing her food in her feeding chair, so I know it's getting a bit snug in there! Hope all is well with you.... December came so fast! Are you excited?

Steph

Subject: StephTo: infantile_scoliosis Date: Tuesday, November 18, 2008, 1:46 AM

Hey Steph,How are you? I was wondering if you decided on your next casting date. I can't believe that December is right around the corner! I hope Noelle is doing well.Jill

[Guest guest]

Oh Steph... I am so sorry to hear how terribly sick you have been. One of those ailments is horrible but all three...?! Ugh. I hope you are feeling better soon. Two weeks is a long time to feel that bad. I am nervous for the cast change. If we see no improvement I do not know if I can pump myself up for another round of all this. now has a cough and runny nose. It always happens before a cast change. I just hope he has enough time to recover before Dec. 1 Keep you fingers crossed. I hope you get well soon and that Noelle can hold on for a little longer in this cast! She is not allowed to get sick too!

Jill

From: jill wienke <jillwienkeyahoo (DOT) com>Subject: [infantile_scoliosi s] StephTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, November 18, 2008, 1:46 AM

Hey Steph,How are you? I was wondering if you decided on your next casting date. I can't believe that December is right around the corner! I hope Noelle is doing well.Jill

[Guest guest]

Thank you.... I hope stays well.... It's a terrible feeling when you see them getting sick before a cast change! I am totally praying for improvement this time..... You SO deserve the good news! I can't wait to hear how it goes..... Hugs, Steph

From: jill wienke <jillwienkeyahoo (DOT) com>Subject: [infantile_scoliosi s] StephTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, November 18, 2008, 1:46 AM

Hey Steph,How are you? I was wondering if you decided on your next casting date. I can't believe that December is right around the corner! I hope Noelle is doing well.Jill

[Guest guest]

I will be sure to let you know asap! I can't wait to get a new cast. This one has been on since August! It is waterproof so he can shower or bathe from time to time and the "pee leaking" is not an issue, even still I think his cast is beginning to smell. I wonder if the waterproof can get moldy? Yuck. Only a week and a half. We just need to get rid of this cold!

Well we are off to sit at a football game for the next 6 hours... it is in the 20s right now... it sounded like a good idea when we got the tickets in August!!! UGH

Get better soon,

Jill

From: jill wienke <jillwienkeyahoo (DOT) com>Subject: [infantile_scoliosi s] StephTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, November 18, 2008, 1:46 AM

Hey Steph,How are you? I was wondering if you decided on your next casting date. I can't believe that December is right around the corner! I hope Noelle is doing well.Jill

[Guest guest]

I will just continue to pray and wish you well! Sometimes a miracle is just around the corner!!!!

We leave this Sunday, But Noelle seems like she's coming down with a little something.... I am so praying that it's nothing because she has begun to eat much less over the past couple of weeks and her belly is really bulging!!!

Where did you see Polarexpress? That is so cool! Noelle would love that.... Tried to get her pic taken with Santa and it was a no-go... Sigh!!! I love those pictures, but she was terrified! Maybe next year???????

Steph

From: Hyatt <heather@infantilesc oliosis.org>Subject: RE: [infantile_scoliosi s] back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 11:49 AM

I think the #’s are great. Especially, when you compare them to when started. Many children who transfer from cast to removable brace (under 20 degrees with no rotation) experience even more correction. Muscles are being used that hadn’t been used before, and brace time can help to strengthen up the core and hold/correct the young spine even more. Ask about plaster –vs- fiberglass (waterproof) for ’s situation and if the doc thinks perhaps a final plaster jacket would benefit in getting him even lower. Plaster is a more mouldable material and maybe that’s whats needed for the final jacket application? I am no doc, but it wouldn’t hurt to ask.

HRH

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of jill wienkeSent: Wednesday, December 03, 2008 7:05 AMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] back from Rochester- no change again

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to

help explain the lack of progress he threw out there maybe we shouldsee a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. His back to the naked eye is beautiful. When asked to bend over it looks so straight!We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . What do you all think of all of this? Thank you for all the support. Jill and

[Guest guest]

I will just continue to pray and wish you well! Sometimes a miracle is just around the corner!!!!

We leave this Sunday, But Noelle seems like she's coming down with a little something.... I am so praying that it's nothing because she has begun to eat much less over the past couple of weeks and her belly is really bulging!!!

Where did you see Polarexpress? That is so cool! Noelle would love that.... Tried to get her pic taken with Santa and it was a no-go... Sigh!!! I love those pictures, but she was terrified! Maybe next year???????

Steph

From: Hyatt <heather@infantilesc oliosis.org>Subject: RE: [infantile_scoliosi s] back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 11:49 AM

I think the #’s are great. Especially, when you compare them to when started. Many children who transfer from cast to removable brace (under 20 degrees with no rotation) experience even more correction. Muscles are being used that hadn’t been used before, and brace time can help to strengthen up the core and hold/correct the young spine even more. Ask about plaster –vs- fiberglass (waterproof) for ’s situation and if the doc thinks perhaps a final plaster jacket would benefit in getting him even lower. Plaster is a more mouldable material and maybe that’s whats needed for the final jacket application? I am no doc, but it wouldn’t hurt to ask.

HRH

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of jill wienkeSent: Wednesday, December 03, 2008 7:05 AMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] back from Rochester- no change again

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to

help explain the lack of progress he threw out there maybe we shouldsee a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. His back to the naked eye is beautiful. When asked to bend over it looks so straight!We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . What do you all think of all of this? Thank you for all the support. Jill and

[Guest guest]

Thank you. I do believe our miracle is coming soon! Keep praying please!

I hope Noelle is not sick. That just adds stress for you! Keep me posted on how she is feeling.

We rode the "Polar Express" about two hours east of here (Columbus, Ohio). It was darling and worth every penny to see 's excitement! It was a two hour ride round trip. We tried Santa for the first time this year. told Santa, "I want an orange truck please." No idea why he wants orange. Anyway, I forgot to mention to Santa that has a body cast. He looked surprised when he picked him up.

I will be thinking of you this weekend. Give and update before you leave as to how Noelle is feeling. Good luck!!!!

Jill

From: Hyatt <heather@infantilesc oliosis.org>Subject: RE: [infantile_scoliosi s] back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 11:49 AM

I think the #’s are great. Especially, when you compare them to when started. Many children who transfer from cast to removable brace (under 20 degrees with no rotation) experience even more correction. Muscles are being used that hadn’t been used before, and brace time can help to strengthen up the core and hold/correct the young spine even more. Ask about plaster –vs- fiberglass (waterproof) for ’s situation and if the doc thinks perhaps a final plaster jacket would benefit in getting him even lower. Plaster is a more mouldable material and maybe that’s whats needed for the final jacket application? I am no doc, but it wouldn’t hurt to ask.

HRH

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of jill wienkeSent: Wednesday, December 03, 2008 7:05 AMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] back from Rochester- no change again

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to

help explain the lack of progress he threw out there maybe we shouldsee a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. His back to the naked eye is beautiful. When asked to bend over it looks so straight!We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . What do you all think of all of this? Thank you for all the support. Jill and

[Guest guest]

Thank you. I do believe our miracle is coming soon! Keep praying please!

I hope Noelle is not sick. That just adds stress for you! Keep me posted on how she is feeling.

We rode the "Polar Express" about two hours east of here (Columbus, Ohio). It was darling and worth every penny to see 's excitement! It was a two hour ride round trip. We tried Santa for the first time this year. told Santa, "I want an orange truck please." No idea why he wants orange. Anyway, I forgot to mention to Santa that has a body cast. He looked surprised when he picked him up.

I will be thinking of you this weekend. Give and update before you leave as to how Noelle is feeling. Good luck!!!!

Jill

From: Hyatt <heather@infantilesc oliosis.org>Subject: RE: [infantile_scoliosi s] back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 11:49 AM

I think the #’s are great. Especially, when you compare them to when started. Many children who transfer from cast to removable brace (under 20 degrees with no rotation) experience even more correction. Muscles are being used that hadn’t been used before, and brace time can help to strengthen up the core and hold/correct the young spine even more. Ask about plaster –vs- fiberglass (waterproof) for ’s situation and if the doc thinks perhaps a final plaster jacket would benefit in getting him even lower. Plaster is a more mouldable material and maybe that’s whats needed for the final jacket application? I am no doc, but it wouldn’t hurt to ask.

HRH

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of jill wienkeSent: Wednesday, December 03, 2008 7:05 AMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] back from Rochester- no change again

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to

help explain the lack of progress he threw out there maybe we shouldsee a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. His back to the naked eye is beautiful. When asked to bend over it looks so straight!We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . What do you all think of all of this? Thank you for all the support. Jill and

[Guest guest]

Hi Steph

Good luck to you and Noelle next week and have a great Christmas.

I hope she doesnt get sick.

Last year Dylan just screamed on Santas lap. It doesnt make for a

very good picture. This year no problem so maybe being 3 is the magic

number.

Darrell

>

>

> From: Hyatt <heather@infantilesc oliosis.org>

> Subject: RE: [infantile_scoliosi s] back from Rochester- no change

again

> To: infantile_scoliosis @yahoogroups. com

> Date: Wednesday, December 3, 2008, 11:49 AM

>

>

>

>

> I think the #'s are great.  Especially, when you compare them to

when started.  Many children who transfer from cast to removable

brace (under 20 degrees with no rotation) experience even more

correction.  Muscles are being used that hadn't been used before, and

brace time can help to strengthen up the core and hold/correct the

young spine even more.  Ask about plaster –vs- fiberglass

(waterproof) for 's situation and if the doc thinks perhaps a

final plaster jacket would benefit in getting him even lower. 

Plaster is a more mouldable material and maybe that's whats needed

for the final jacket application?  I am no doc, but it wouldn't hurt

to ask.

> HRH

>

>

>

>

> From: infantile_scoliosis @yahoogroups. com [mailto:infantile_

scoliosis@ yahoogroups. com] On Behalf Of jill wienke

> Sent: Wednesday, December 03, 2008 7:05 AM

> To: infantile_scoliosis @yahoogroups. com

> Subject: [infantile_scoliosi s] back from Rochester- no change again

>  

>

>

>

>

> Hi everyone. Well I am not sure where to start. We are back from

our latest cast change. had his last cast on for just over 3

months. We had been stuck at 16 degrees for the past 3 cast, now make

it four. The xrays (supine) looked so good to me. I was sure we were

close to 10 degrees. I could barely contain myself, then the doctor

pulled up the xray on his computer and started measuring it with a

new program (as opposed to with protractor, ruler and pencil as he

usually does.) Guess the number that came up...16. He said by

tweaking and moving the lines a bit he got anywhere from 11 or 12 to

18 or 19. Our doctor knows our frustration and can't explain why we

are not getting more of a change. In the past he has said, " I think

we can fix this, especially because it is clear has no other

underlying syndromes.... " Well this time it was almost as if he was

trying to help explain the lack of progress he threw out there maybe

we should

> see a geneticist. I may be in denial, but I feel that is

unnecessary. I do not want my baby to be poked or prodded any more

than needed.

> His back to the naked eye is beautiful. When asked to bend over it

looks so straight!

> We are going to try another cast until March (when turns 3).

We may even do one more after that and then go for a brace for the

summer. What do you all think of this? I have cried until I am out of

tears due to frustration and exhaustion. I know is healthy and

happy and that the casts have made a difference in his life. The

doctor almost sounded as if he is giving up on curing .

> What do you all think of all of this? Thank you for all the

support.

> Jill and

>  

>

[Guest guest]

Hi Jill

Thats funny about Santa. We took him to see him this past weekend and got the same reaction. When Santa picked him up he said "Oh your a solid young fellow" .

Dylan looked at him pulled up his shirt and told him "I got a cast on"

Polar express would be cool Dylan also loves trains he just cant get enough of ""

Darrell

[infantile_scoliosi s] back from Rochester- no change again

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to help explain the lack of progress he threw out there maybe we shouldsee a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. His back to the naked eye is beautiful. When asked to bend over it looks so straight!We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . What do you all think of all of this? Thank you for all the support. Jill and

[Guest guest]

Hi Darrell!

That is so funny. Poor, confused Santa! The same thing happened on the train- the "conductor" had a microphone and the kids walked up to the front to tell what they wanted. She tried to pick up, fumbled around, mumbled, "Oh my... " We watched from our seat as a nearby mom tried to pick him up. Oh the look on her face. We were to far to offer an explanation so we just video taped it all and laughed. What else can you do, right?!

Hope your holidays are full of laughter!

Jill

From: Hyatt <heather@infantilesc oliosis.org>Subject: RE: [infantile_scoliosi s] back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 11:49 AM

I think the #’s are great. Especially, when you compare them to when started. Many children who transfer from cast to removable brace (under 20 degrees with no rotation) experience even more correction. Muscles are being used that hadn’t been used before, and brace time can help to strengthen up the core and hold/correct the young spine even more. Ask about plaster –vs- fiberglass (waterproof) for ’s situation and if the doc thinks perhaps a final plaster jacket would benefit in getting him even lower. Plaster is a more mouldable material and maybe that’s whats needed for the final jacket application? I am no doc, but it wouldn’t hurt to ask.

HRH

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of jill wienkeSent: Wednesday, December 03, 2008 7:05 AMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] back from Rochester- no change again

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to

help explain the lack of progress he threw out there maybe we shouldsee a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. His back to the naked eye is beautiful. When asked to bend over it looks so straight!We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . What do you all think of all of this? Thank you for all the support. Jill and