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That's so great about Madison Jen, best wishes for her continued

corrected state! I was wondering, how many braces did she grow

through during that 8 mos., just curious how often Sol may have to

be fitted if we do in fact end up being able to get her brace. :)

Thanks,

Joy

> > > >

> > > > > Brace Question

> > > > >

> > > > >

> > > > > Hi Everyone, we've definitely been pretty

> > > > > incognito online this past

> > > > > month has been crazy busy w/summer & such. I'm

> > > > > just checking in to

> > > > > see how everyone is doing, I've perused

> > > through

> > > > > some of the recent

> > > > > posts. How's Ian's skin doing , I

> > > didn't

> > > > > catch what you

> > > > > ended up deciding to do? Well Sol's is doing

> > > the

> > > > > same thing again,

> > > > > we've loved the water proof cast it's just

> > > that

> > > > > she's growing out if

> > > > > it already so I think it's too tight to dry

> > > > > properly (hence the skin

> > > > > rawing underneath..) the padding is sticking

> > > to it

> > > > > again too so she

> > > > > hasn't been too comofrtable at night mostly.

> > > So I

> > > > > definitely want to

> > > > > get it off ASAP, her skin is not looking good

> > > > > under there. The

> > > > > problem is we're not scheduled back until

> > > 9/18,

> > > > > that's going to be

> > > > > too late so I don't know what I'm going to do.

> > > I

> > > > > put a call in w/Dr.

> > > > > Sander's sec. but I haven't heard back yet &

> > >

> > > > > Jane is out till

> > > > > Mon. & I'd like to have this taken off here

> > > like

> > > > > today or Mon. at

> > > > > the latest. I wanted to ask for some of your

> > > input

> > > > > on the bracing,

> > > > > Dr. said we could probably go with her

> > > > > brace measuring next

> > > > > visit, hopefully that's still the case, her

> > > back

> > > > > still looks good to

> > > > > me. Does anyone know if he uses the table to

> > > do

> > > > > the brace molds as

> > > > > well? Or is bracing something we can do

> > > through

> > > > > our local

> > > > > children's hospital? Well in any case I'm

> > > > > wondering too if maybe we

> > > > > can just have her fitted for a brace here

> > > until we

> > > > > go back there mid

> > > > > Sept. to have her last cast & brace

> > > measurements

> > > > > done, does anyone

> > > > > know how long that would take? And if the

> > > table

> > > > > aids the Dr.'s at

> > > > > Shriner's in bracing as well? I'm afraid to

> > > stop

> > > > > going there

> > > > > because I love Dr. & have faith in his

> > > > > treating her, my

> > > > > husband was wondering if we'd get the same

> > > bracing

> > > > > done here as

> > > > > there. Well I'll be talking to Shriner's &

> > > > > Children's here about it

> > > > > too.. just wanted to get some other MOMMY

> > > input if

> > > > > anyone is around

> > > > > who's been/going through it!! Thank you!

> > > > >

> > > > > ~Joy & Sol

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > [Non-text portions of this message have been

> > > > > removed]

> > > > >

> > > > >

> > > >

> > > >

> > > > __________________________________________________

> > > >

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thanks and best wishes for you guys too....she went through 2...we got the first

one in SLC and the second one in San . Her orthotist there used the one

from SLC as a guide on how to make the new one. He has a risser he uses to make

the brace, so not perfect, but it worked out great. He made a mold with plaster

with her on the frame. As a final note, she was ready for a new one if she

would have stayed in a brace any longer. Hope this helps andbest wishes again!

Jen

mosunshinebaby <mosunshinebaby@...> wrote:

That's so great about Madison Jen, best wishes for her continued

corrected state! I was wondering, how many braces did she grow

through during that 8 mos., just curious how often Sol may have to

be fitted if we do in fact end up being able to get her brace. :)

Thanks,

Joy

> > > >

> > > > > Brace Question

> > > > >

> > > > >

> > > > > Hi Everyone, we've definitely been pretty

> > > > > incognito online this past

> > > > > month has been crazy busy w/summer & such. I'm

> > > > > just checking in to

> > > > > see how everyone is doing, I've perused

> > > through

> > > > > some of the recent

> > > > > posts. How's Ian's skin doing , I

> > > didn't

> > > > > catch what you

> > > > > ended up deciding to do? Well Sol's is doing

> > > the

> > > > > same thing again,

> > > > > we've loved the water proof cast it's just

> > > that

> > > > > she's growing out if

> > > > > it already so I think it's too tight to dry

> > > > > properly (hence the skin

> > > > > rawing underneath..) the padding is sticking

> > > to it

> > > > > again too so she

> > > > > hasn't been too comofrtable at night mostly.

> > > So I

> > > > > definitely want to

> > > > > get it off ASAP, her skin is not looking good

> > > > > under there. The

> > > > > problem is we're not scheduled back until

> > > 9/18,

> > > > > that's going to be

> > > > > too late so I don't know what I'm going to do.

> > > I

> > > > > put a call in w/Dr.

> > > > > Sander's sec. but I haven't heard back yet &

> > >

> > > > > Jane is out till

> > > > > Mon. & I'd like to have this taken off here

> > > like

> > > > > today or Mon. at

> > > > > the latest. I wanted to ask for some of your

> > > input

> > > > > on the bracing,

> > > > > Dr. said we could probably go with her

> > > > > brace measuring next

> > > > > visit, hopefully that's still the case, her

> > > back

> > > > > still looks good to

> > > > > me. Does anyone know if he uses the table to

> > > do

> > > > > the brace molds as

> > > > > well? Or is bracing something we can do

> > > through

> > > > > our local

> > > > > children's hospital? Well in any case I'm

> > > > > wondering too if maybe we

> > > > > can just have her fitted for a brace here

> > > until we

> > > > > go back there mid

> > > > > Sept. to have her last cast & brace

> > > measurements

> > > > > done, does anyone

> > > > > know how long that would take? And if the

> > > table

> > > > > aids the Dr.'s at

> > > > > Shriner's in bracing as well? I'm afraid to

> > > stop

> > > > > going there

> > > > > because I love Dr. & have faith in his

> > > > > treating her, my

> > > > > husband was wondering if we'd get the same

> > > bracing

> > > > > done here as

> > > > > there. Well I'll be talking to Shriner's &

> > > > > Children's here about it

> > > > > too.. just wanted to get some other MOMMY

> > > input if

> > > > > anyone is around

> > > > > who's been/going through it!! Thank you!

> > > > >

> > > > > ~Joy & Sol

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > [Non-text portions of this message have been

> > > > > removed]

> > > > >

> > > > >

> > > >

> > > >

> > > > __________________________________________________

> > > >

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Share on other sites

Hi -we wish you well tomorrow at Madison's appt.

Are you guys staying with your in-laws in Saginaw? We would love to meet you

and Madison, but I know you guys will be busy. Call me if you have any free

time. We are very close to your in-laws.

Tasha/

<jenstewart73@...> wrote:

Madison was weaned out of her brace after wearing it for 8 months

following her 7 casts. It was reduced by two hours a day each week until she

only wore it at night. She then wore it all night for a month and then

discontinued it all together. She has been completely out of her brace now for

3.5 months. So far, all x-rays show correction is being maintained. She has an

appt in Dallas this Friday for new x-rays and pulm f/u. I'll post Monday when we

get back home.

Jen

http://www.infantilescoliosis.org/madisons_story.htm

jimsuec <cappelli5@...> wrote:

Joy,

I was wondering if you could update me on your daughter's

improvements. Are they going to do a brace the next time you go to

Erie?? How many casts has she had?? What were the degrees and

improvements with her casts?? Does she have rotation that has been

corrected?? Sorry so many questions but not up to date with the

postings and trying to see if is still on track for her

brace...a light at the end of the tunnel!!. Thanks for the info.

Sue Cappelli

(02-23-04)

> > >

> > > > Brace Question

> > > >

> > > >

> > > > Hi Everyone, we've definitely been pretty

> > > > incognito online this past

> > > > month has been crazy busy w/summer & such. I'm

> > > > just checking in to

> > > > see how everyone is doing, I've perused

> > through

> > > > some of the recent

> > > > posts. How's Ian's skin doing , I

> > didn't

> > > > catch what you

> > > > ended up deciding to do? Well Sol's is doing

> > the

> > > > same thing again,

> > > > we've loved the water proof cast it's just

> > that

> > > > she's growing out if

> > > > it already so I think it's too tight to dry

> > > > properly (hence the skin

> > > > rawing underneath..) the padding is sticking

> > to it

> > > > again too so she

> > > > hasn't been too comofrtable at night mostly.

> > So I

> > > > definitely want to

> > > > get it off ASAP, her skin is not looking good

> > > > under there. The

> > > > problem is we're not scheduled back until

> > 9/18,

> > > > that's going to be

> > > > too late so I don't know what I'm going to do.

> > I

> > > > put a call in w/Dr.

> > > > Sander's sec. but I haven't heard back yet &

> >

> > > > Jane is out till

> > > > Mon. & I'd like to have this taken off here

> > like

> > > > today or Mon. at

> > > > the latest. I wanted to ask for some of your

> > input

> > > > on the bracing,

> > > > Dr. said we could probably go with her

> > > > brace measuring next

> > > > visit, hopefully that's still the case, her

> > back

> > > > still looks good to

> > > > me. Does anyone know if he uses the table to

> > do

> > > > the brace molds as

> > > > well? Or is bracing something we can do

> > through

> > > > our local

> > > > children's hospital? Well in any case I'm

> > > > wondering too if maybe we

> > > > can just have her fitted for a brace here

> > until we

> > > > go back there mid

> > > > Sept. to have her last cast & brace

> > measurements

> > > > done, does anyone

> > > > know how long that would take? And if the

> > table

> > > > aids the Dr.'s at

> > > > Shriner's in bracing as well? I'm afraid to

> > stop

> > > > going there

> > > > because I love Dr. & have faith in his

> > > > treating her, my

> > > > husband was wondering if we'd get the same

> > bracing

> > > > done here as

> > > > there. Well I'll be talking to Shriner's &

> > > > Children's here about it

> > > > too.. just wanted to get some other MOMMY

> > input if

> > > > anyone is around

> > > > who's been/going through it!! Thank you!

> > > >

> > > > ~Joy & Sol

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > [Non-text portions of this message have been

> > > > removed]

> > > >

> > > >

> > >

> > >

> > > __________________________________________________

> > >

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Share on other sites

BTW, yes it does help to hear what you guys experienced through your

bracing so thank you very much for sharing! Take care & thanks

again! -Joy

> > > > >

> > > > > > Brace Question

> > > > > >

> > > > > >

> > > > > > Hi Everyone, we've definitely been pretty

> > > > > > incognito online this past

> > > > > > month has been crazy busy w/summer & such. I'm

> > > > > > just checking in to

> > > > > > see how everyone is doing, I've perused

> > > > through

> > > > > > some of the recent

> > > > > > posts. How's Ian's skin doing , I

> > > > didn't

> > > > > > catch what you

> > > > > > ended up deciding to do? Well Sol's is doing

> > > > the

> > > > > > same thing again,

> > > > > > we've loved the water proof cast it's just

> > > > that

> > > > > > she's growing out if

> > > > > > it already so I think it's too tight to dry

> > > > > > properly (hence the skin

> > > > > > rawing underneath..) the padding is sticking

> > > > to it

> > > > > > again too so she

> > > > > > hasn't been too comofrtable at night mostly.

> > > > So I

> > > > > > definitely want to

> > > > > > get it off ASAP, her skin is not looking good

> > > > > > under there. The

> > > > > > problem is we're not scheduled back until

> > > > 9/18,

> > > > > > that's going to be

> > > > > > too late so I don't know what I'm going to do.

> > > > I

> > > > > > put a call in w/Dr.

> > > > > > Sander's sec. but I haven't heard back yet &

> > > >

> > > > > > Jane is out till

> > > > > > Mon. & I'd like to have this taken off here

> > > > like

> > > > > > today or Mon. at

> > > > > > the latest. I wanted to ask for some of your

> > > > input

> > > > > > on the bracing,

> > > > > > Dr. said we could probably go with her

> > > > > > brace measuring next

> > > > > > visit, hopefully that's still the case, her

> > > > back

> > > > > > still looks good to

> > > > > > me. Does anyone know if he uses the table to

> > > > do

> > > > > > the brace molds as

> > > > > > well? Or is bracing something we can do

> > > > through

> > > > > > our local

> > > > > > children's hospital? Well in any case I'm

> > > > > > wondering too if maybe we

> > > > > > can just have her fitted for a brace here

> > > > until we

> > > > > > go back there mid

> > > > > > Sept. to have her last cast & brace

> > > > measurements

> > > > > > done, does anyone

> > > > > > know how long that would take? And if the

> > > > table

> > > > > > aids the Dr.'s at

> > > > > > Shriner's in bracing as well? I'm afraid to

> > > > stop

> > > > > > going there

> > > > > > because I love Dr. & have faith in his

> > > > > > treating her, my

> > > > > > husband was wondering if we'd get the same

> > > > bracing

> > > > > > done here as

> > > > > > there. Well I'll be talking to Shriner's &

> > > > > > Children's here about it

> > > > > > too.. just wanted to get some other MOMMY

> > > > input if

> > > > > > anyone is around

> > > > > > who's been/going through it!! Thank you!

> > > > > >

> > > > > > ~Joy & Sol

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > [Non-text portions of this message have been

> > > > > > removed]

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > > > __________________________________________________

> > > > >

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  • 1 year later...
Guest guest

I never had a real brace. I had a velcro belt kind of thing that was very

uncomfortable, and was more for the fact that I had an abdominal incision (my

fusion was done from the front. I hope this helps, even though I am a girl and

all :)

________________________________________________________________________________\

____

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Guest guest

I never had a real brace. I had a velcro belt kind of thing that was very

uncomfortable, and was more for the fact that I had an abdominal incision (my

fusion was done from the front. I hope this helps, even though I am a girl and

all :)

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

Link to comment
Share on other sites

Guest guest

I never had a real brace. I had a velcro belt kind of thing that was very

uncomfortable, and was more for the fact that I had an abdominal incision (my

fusion was done from the front. I hope this helps, even though I am a girl and

all :)

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

Link to comment
Share on other sites

Guest guest

I never had a real brace. I had a velcro belt kind of thing that was very

uncomfortable, and was more for the fact that I had an abdominal incision (my

fusion was done from the front. I hope this helps, even though I am a girl and

all :)

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

Link to comment
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Guest guest

Had a Bauerfiend ortho lumbar support after my fusion at L4-L5. It was a size

S3, which is pretty common size for an adult lady. Would you believe, that

sucker cost $1176? Wow. And my insurance didn't pay for it either. But the

brace supplier kind of played a trick on us, getting us to sign a paper which he

claimed was " so they could account for this one being given to a patient and

replace it with another in their inventory " . So on the paper, I looked for a

dollar figure. The biggest number I could find at the bottom of the page was

1176, so I asked if that's what it cost, because there was NO WAY that we could

ever pay for. The supplier said " if your insurance doesn't cover it, we'll help

you pay for it. " So I wrote - in great big letters - " We cannot pay for this.

If this is the amount for the brace, we cannot pay for it. " And initialed, and

dated my comment.

Of course, they tried to bill us for it. But when I called back, they were

always unavailable, never returned my phone calls (which were numerous and

documented). This went on for 6 months after the first bill arrived.

If I could take them to court, I would. And they'd better have that paper that

I signed!!!

Debbie Dahl

Oklahoma

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Guest guest

Had a Bauerfiend ortho lumbar support after my fusion at L4-L5. It was a size

S3, which is pretty common size for an adult lady. Would you believe, that

sucker cost $1176? Wow. And my insurance didn't pay for it either. But the

brace supplier kind of played a trick on us, getting us to sign a paper which he

claimed was " so they could account for this one being given to a patient and

replace it with another in their inventory " . So on the paper, I looked for a

dollar figure. The biggest number I could find at the bottom of the page was

1176, so I asked if that's what it cost, because there was NO WAY that we could

ever pay for. The supplier said " if your insurance doesn't cover it, we'll help

you pay for it. " So I wrote - in great big letters - " We cannot pay for this.

If this is the amount for the brace, we cannot pay for it. " And initialed, and

dated my comment.

Of course, they tried to bill us for it. But when I called back, they were

always unavailable, never returned my phone calls (which were numerous and

documented). This went on for 6 months after the first bill arrived.

If I could take them to court, I would. And they'd better have that paper that

I signed!!!

Debbie Dahl

Oklahoma

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Share on other sites

Guest guest

Had a Bauerfiend ortho lumbar support after my fusion at L4-L5. It was a size

S3, which is pretty common size for an adult lady. Would you believe, that

sucker cost $1176? Wow. And my insurance didn't pay for it either. But the

brace supplier kind of played a trick on us, getting us to sign a paper which he

claimed was " so they could account for this one being given to a patient and

replace it with another in their inventory " . So on the paper, I looked for a

dollar figure. The biggest number I could find at the bottom of the page was

1176, so I asked if that's what it cost, because there was NO WAY that we could

ever pay for. The supplier said " if your insurance doesn't cover it, we'll help

you pay for it. " So I wrote - in great big letters - " We cannot pay for this.

If this is the amount for the brace, we cannot pay for it. " And initialed, and

dated my comment.

Of course, they tried to bill us for it. But when I called back, they were

always unavailable, never returned my phone calls (which were numerous and

documented). This went on for 6 months after the first bill arrived.

If I could take them to court, I would. And they'd better have that paper that

I signed!!!

Debbie Dahl

Oklahoma

Link to comment
Share on other sites

Guest guest

Had a Bauerfiend ortho lumbar support after my fusion at L4-L5. It was a size

S3, which is pretty common size for an adult lady. Would you believe, that

sucker cost $1176? Wow. And my insurance didn't pay for it either. But the

brace supplier kind of played a trick on us, getting us to sign a paper which he

claimed was " so they could account for this one being given to a patient and

replace it with another in their inventory " . So on the paper, I looked for a

dollar figure. The biggest number I could find at the bottom of the page was

1176, so I asked if that's what it cost, because there was NO WAY that we could

ever pay for. The supplier said " if your insurance doesn't cover it, we'll help

you pay for it. " So I wrote - in great big letters - " We cannot pay for this.

If this is the amount for the brace, we cannot pay for it. " And initialed, and

dated my comment.

Of course, they tried to bill us for it. But when I called back, they were

always unavailable, never returned my phone calls (which were numerous and

documented). This went on for 6 months after the first bill arrived.

If I could take them to court, I would. And they'd better have that paper that

I signed!!!

Debbie Dahl

Oklahoma

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Share on other sites

  • 3 years later...
Guest guest

,

I know this is so hard right now to work through. And to answer your question about wearing a brace.....that is hard to say. Every child is so different like I said before. And Abby is still so young. She still has a lot of time to get GOOD correction in casts. I am not trying to sound rude, honest I am not, but you have not even gone through a year of casting. At least give it that amount of time. And she may not even go through a year of casting! Of course there is a chance she could have to wear a brace for the rest of her life. "A chance" not for certain though.

was in a series of casts for 14 months! Until that time was over I could not allow myself to think into the future. It is likely he will be in a brace for while. Now all I do is think about his future!!!

He is such a strong kid because of all this! You will find that with Abby too as she gets older.

Anyway I just wanted you to know I am thinking about you and praying for you to have some peace in all this. "TRY" to take it one day at a time and enjoy that sweet girl.

((HUGS))

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Thu, March 17, 2011 8:37:46 AMSubject: Brace Question

As you all know, I had an upsetting visit to the doctor this week. I just have a question - if Abby's doctor is right and she doesn't rach 0 degrees or doesn't get anywhere near there, does that mean that she will have to wear a brace all through her entire school years? I would rather take a beating than to see her have to deal with the cruelty of other children and to feel "different" when she goes to school. I feel so down and depressed about all of this. I want to stay positive. But, it is so hard when you look at your little girl's big smile and want the best for her. - , mom of Abby (19 months) 48* down to 20* in 3rd cast

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Guest guest

,

I know this is so hard right now to work through. And to answer your question about wearing a brace.....that is hard to say. Every child is so different like I said before. And Abby is still so young. She still has a lot of time to get GOOD correction in casts. I am not trying to sound rude, honest I am not, but you have not even gone through a year of casting. At least give it that amount of time. And she may not even go through a year of casting! Of course there is a chance she could have to wear a brace for the rest of her life. "A chance" not for certain though.

was in a series of casts for 14 months! Until that time was over I could not allow myself to think into the future. It is likely he will be in a brace for while. Now all I do is think about his future!!!

He is such a strong kid because of all this! You will find that with Abby too as she gets older.

Anyway I just wanted you to know I am thinking about you and praying for you to have some peace in all this. "TRY" to take it one day at a time and enjoy that sweet girl.

((HUGS))

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Thu, March 17, 2011 8:37:46 AMSubject: Brace Question

As you all know, I had an upsetting visit to the doctor this week. I just have a question - if Abby's doctor is right and she doesn't rach 0 degrees or doesn't get anywhere near there, does that mean that she will have to wear a brace all through her entire school years? I would rather take a beating than to see her have to deal with the cruelty of other children and to feel "different" when she goes to school. I feel so down and depressed about all of this. I want to stay positive. But, it is so hard when you look at your little girl's big smile and want the best for her. - , mom of Abby (19 months) 48* down to 20* in 3rd cast

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Hi ,

I'd have to agree with Tasha, let the whole thing play out. Our little man started casting at 14 months. Over the last 4 1/2 years he has had 9 casts and is currently in his 6th/7th braces (one daytime and one nighttime). I, too, worried alot about school and what the other kids would say. The one thing I have found over the last 6 months of his Kindergarten is that HE is comfortable with who HE is. One of the boys once at his daycare told me that he was going to tell his mommy that he wanted a brace (like Noahs) :o) That made my heart feel good. Noah always shows everyone his brace when he gets a new one, and lets people know why he has to wear it (he has a crooked back, in his words) lol! We have never hid the casts or braces from anyone, it's just part of who he is. We do get some strange looks from people sometimes and questions, we just try (politely) to explain the situation. Noah is not so

inlove with his new nighttime brace, as it is tight and different from what he is use to, but he did take it to school on Tuesday for Show and Tell. We have always treated Noah as a normal child, not giving into the 'Oh, my back hurts, I can't do that'. However, we do let him know that there is something 'Special' about him that most kids dont get to experience. Believe me, it's not always easy....but, your child will absolutely AMAZE you!

On a different note, we did choose to put Noah into a Private School as I like the parent interest, small classes and going through school with the same classmates year after year. My husband has two gals that he went to school with that are teacher and they said they both have "special' kids in their classes and that they believe it's best to just start them and let the other kids know the situation. They both said the other kids are very good with the 'special' kids. Nice to hear, especially from a teachers point of view.

Hope that helps.

Noah 5yrs 81/2 mo

80* to 11*(daytime brace) 3*(nighttime brace), 9 casts 6/7 brace SLC

From: Tasha Fontenot <ryanswalk@...>Subject: Re: Brace Questioninfantile scoliosis treatment Date: Thursday, March 17, 2011, 9:13 AM

,

I know this is so hard right now to work through. And to answer your question about wearing a brace.....that is hard to say. Every child is so different like I said before. And Abby is still so young. She still has a lot of time to get GOOD correction in casts. I am not trying to sound rude, honest I am not, but you have not even gone through a year of casting. At least give it that amount of time. And she may not even go through a year of casting! Of course there is a chance she could have to wear a brace for the rest of her life. "A chance" not for certain though.

was in a series of casts for 14 months! Until that time was over I could not allow myself to think into the future. It is likely he will be in a brace for while. Now all I do is think about his future!!!

He is such a strong kid because of all this! You will find that with Abby too as she gets older.

Anyway I just wanted you to know I am thinking about you and praying for you to have some peace in all this. "TRY" to take it one day at a time and enjoy that sweet girl.

((HUGS))

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Thu, March 17, 2011 8:37:46 AMSubject: Brace Question

As you all know, I had an upsetting visit to the doctor this week. I just have a question - if Abby's doctor is right and she doesn't rach 0 degrees or doesn't get anywhere near there, does that mean that she will have to wear a brace all through her entire school years? I would rather take a beating than to see her have to deal with the cruelty of other children and to feel "different" when she goes to school. I feel so down and depressed about all of this. I want to stay positive. But, it is so hard when you look at your little girl's big smile and want the best for her. - , mom of Abby (19 months) 48* down to 20* in 3rd cast

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Hi ,

I'd have to agree with Tasha, let the whole thing play out. Our little man started casting at 14 months. Over the last 4 1/2 years he has had 9 casts and is currently in his 6th/7th braces (one daytime and one nighttime). I, too, worried alot about school and what the other kids would say. The one thing I have found over the last 6 months of his Kindergarten is that HE is comfortable with who HE is. One of the boys once at his daycare told me that he was going to tell his mommy that he wanted a brace (like Noahs) :o) That made my heart feel good. Noah always shows everyone his brace when he gets a new one, and lets people know why he has to wear it (he has a crooked back, in his words) lol! We have never hid the casts or braces from anyone, it's just part of who he is. We do get some strange looks from people sometimes and questions, we just try (politely) to explain the situation. Noah is not so

inlove with his new nighttime brace, as it is tight and different from what he is use to, but he did take it to school on Tuesday for Show and Tell. We have always treated Noah as a normal child, not giving into the 'Oh, my back hurts, I can't do that'. However, we do let him know that there is something 'Special' about him that most kids dont get to experience. Believe me, it's not always easy....but, your child will absolutely AMAZE you!

On a different note, we did choose to put Noah into a Private School as I like the parent interest, small classes and going through school with the same classmates year after year. My husband has two gals that he went to school with that are teacher and they said they both have "special' kids in their classes and that they believe it's best to just start them and let the other kids know the situation. They both said the other kids are very good with the 'special' kids. Nice to hear, especially from a teachers point of view.

Hope that helps.

Noah 5yrs 81/2 mo

80* to 11*(daytime brace) 3*(nighttime brace), 9 casts 6/7 brace SLC

From: Tasha Fontenot <ryanswalk@...>Subject: Re: Brace Questioninfantile scoliosis treatment Date: Thursday, March 17, 2011, 9:13 AM

,

I know this is so hard right now to work through. And to answer your question about wearing a brace.....that is hard to say. Every child is so different like I said before. And Abby is still so young. She still has a lot of time to get GOOD correction in casts. I am not trying to sound rude, honest I am not, but you have not even gone through a year of casting. At least give it that amount of time. And she may not even go through a year of casting! Of course there is a chance she could have to wear a brace for the rest of her life. "A chance" not for certain though.

was in a series of casts for 14 months! Until that time was over I could not allow myself to think into the future. It is likely he will be in a brace for while. Now all I do is think about his future!!!

He is such a strong kid because of all this! You will find that with Abby too as she gets older.

Anyway I just wanted you to know I am thinking about you and praying for you to have some peace in all this. "TRY" to take it one day at a time and enjoy that sweet girl.

((HUGS))

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Thu, March 17, 2011 8:37:46 AMSubject: Brace Question

As you all know, I had an upsetting visit to the doctor this week. I just have a question - if Abby's doctor is right and she doesn't rach 0 degrees or doesn't get anywhere near there, does that mean that she will have to wear a brace all through her entire school years? I would rather take a beating than to see her have to deal with the cruelty of other children and to feel "different" when she goes to school. I feel so down and depressed about all of this. I want to stay positive. But, it is so hard when you look at your little girl's big smile and want the best for her. - , mom of Abby (19 months) 48* down to 20* in 3rd cast

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Hi ,

I totally hear you. However, as much as it hurts us as parents, we can't let our kiddo's see that. All we can do to prepare them for the cruelties of the world is to build their self-esteem ourselves. My daughter has no belly button due to being born with an Omphalocele and other scars because of followup surgeries and her hemi removal surgery. I've often felt sad that she'll never be able to wear a 2 piece bathing suit for fear of ridicule or teasing from others. Petty, I know. But it's the little things. I had a mom of another "O" baby tell me a story that her child was teased by other kids that she was an "alien" because she didn't have a belly button. This was when she was in maybe 5th grade or so, know what she told them? "Angel's don't have belly button's either." Her mom and given her the strength and know-how to respond. I've also have heard

of parents of school-age kids that have gone in and had a presentation about why their child has a cast/brace/scars etc at the beginning of the year (Gail, I think you were one that has done this?) and that giving children a reason seems to help them see that it isn't a "freaky" thing.

Already tho I see Grace as proud of her differences. She loves to show people her scars and her brace/cast. I encourage her to do it too so she doesn't feel shame about it. She even, on her own once, got up in a restaurant, went to the table next door, lifted her little shirt and said, "See my tummy? No belly button!" That took some explaining, lol.

With Abby only being 19 months, you have time on your side. You still have 3 years before she'll be in k-garten at least. As far as pre-school/daycare? My experience is that kids that age just plain don't care. They just see someone to play with and have fun with. They don't see the differences. Maybe the world should take lessons from our youngest of the population :)

*hugs* to you. I know its hard. I've had since I was 20 weeks pregnant with Grace to stress over this very issue and I've for the most part either let it go, or figure we'll cross that bridge when we get to it.

Jane

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Hi ,

I totally hear you. However, as much as it hurts us as parents, we can't let our kiddo's see that. All we can do to prepare them for the cruelties of the world is to build their self-esteem ourselves. My daughter has no belly button due to being born with an Omphalocele and other scars because of followup surgeries and her hemi removal surgery. I've often felt sad that she'll never be able to wear a 2 piece bathing suit for fear of ridicule or teasing from others. Petty, I know. But it's the little things. I had a mom of another "O" baby tell me a story that her child was teased by other kids that she was an "alien" because she didn't have a belly button. This was when she was in maybe 5th grade or so, know what she told them? "Angel's don't have belly button's either." Her mom and given her the strength and know-how to respond. I've also have heard

of parents of school-age kids that have gone in and had a presentation about why their child has a cast/brace/scars etc at the beginning of the year (Gail, I think you were one that has done this?) and that giving children a reason seems to help them see that it isn't a "freaky" thing.

Already tho I see Grace as proud of her differences. She loves to show people her scars and her brace/cast. I encourage her to do it too so she doesn't feel shame about it. She even, on her own once, got up in a restaurant, went to the table next door, lifted her little shirt and said, "See my tummy? No belly button!" That took some explaining, lol.

With Abby only being 19 months, you have time on your side. You still have 3 years before she'll be in k-garten at least. As far as pre-school/daycare? My experience is that kids that age just plain don't care. They just see someone to play with and have fun with. They don't see the differences. Maybe the world should take lessons from our youngest of the population :)

*hugs* to you. I know its hard. I've had since I was 20 weeks pregnant with Grace to stress over this very issue and I've for the most part either let it go, or figure we'll cross that bridge when we get to it.

Jane

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I love this thread and you are all such amazing mothers! Oh Jane- the angel thing- I just LOVE that!!! Beautiful. I love the presentation idea too- I remember Gail did that, awesome!I don't have it "down" or anything, but the biggest thing I've learned lately is that children are living in the moment and if I live in the future or the past, I will miss the moment with my child. Hope that helps : ) Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Jane Bigler <janemhar@...>infantile scoliosis treatment Sent: Thu, March 17, 2011 10:16:12 AMSubject: Re: Brace Question

Hi ,

I totally hear you. However, as much as it hurts us as parents, we can't let our kiddo's see that. All we can do to prepare them for the cruelties of the world is to build their self-esteem ourselves. My daughter has no belly button due to being born with an Omphalocele and other scars because of followup surgeries and her hemi removal surgery. I've often felt sad that she'll never be able to wear a 2 piece bathing suit for fear of ridicule or teasing from others. Petty, I know. But it's the little things. I had a mom of another "O" baby tell me a story that her child was teased by other kids that she was an "alien" because she didn't have a belly button. This was when she was in maybe 5th grade or so, know what she told them? "Angel's don't have belly button's either." Her mom and given her the strength and know-how to respond. I've also have heard

of parents of school-age kids that have gone in and had a presentation about why their child has a cast/brace/scars etc at the beginning of the year (Gail, I think you were one that has done this?) and that giving children a reason seems to help them see that it isn't a "freaky" thing.

Already tho I see Grace as proud of her differences. She loves to show people her scars and her brace/cast. I encourage her to do it too so she doesn't feel shame about it. She even, on her own once, got up in a restaurant, went to the table next door, lifted her little shirt and said, "See my tummy? No belly button!" That took some explaining, lol.

With Abby only being 19 months, you have time on your side. You still have 3 years before she'll be in k-garten at least. As far as pre-school/daycare? My experience is that kids that age just plain don't care. They just see someone to play with and have fun with. They don't see the differences. Maybe the world should take lessons from our youngest of the population :)

*hugs* to you. I know its hard. I've had since I was 20 weeks pregnant with Grace to stress over this very issue and I've for the most part either let it go, or figure we'll cross that bridge when we get to it.

Jane

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I love this thread and you are all such amazing mothers! Oh Jane- the angel thing- I just LOVE that!!! Beautiful. I love the presentation idea too- I remember Gail did that, awesome!I don't have it "down" or anything, but the biggest thing I've learned lately is that children are living in the moment and if I live in the future or the past, I will miss the moment with my child. Hope that helps : ) Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Jane Bigler <janemhar@...>infantile scoliosis treatment Sent: Thu, March 17, 2011 10:16:12 AMSubject: Re: Brace Question

Hi ,

I totally hear you. However, as much as it hurts us as parents, we can't let our kiddo's see that. All we can do to prepare them for the cruelties of the world is to build their self-esteem ourselves. My daughter has no belly button due to being born with an Omphalocele and other scars because of followup surgeries and her hemi removal surgery. I've often felt sad that she'll never be able to wear a 2 piece bathing suit for fear of ridicule or teasing from others. Petty, I know. But it's the little things. I had a mom of another "O" baby tell me a story that her child was teased by other kids that she was an "alien" because she didn't have a belly button. This was when she was in maybe 5th grade or so, know what she told them? "Angel's don't have belly button's either." Her mom and given her the strength and know-how to respond. I've also have heard

of parents of school-age kids that have gone in and had a presentation about why their child has a cast/brace/scars etc at the beginning of the year (Gail, I think you were one that has done this?) and that giving children a reason seems to help them see that it isn't a "freaky" thing.

Already tho I see Grace as proud of her differences. She loves to show people her scars and her brace/cast. I encourage her to do it too so she doesn't feel shame about it. She even, on her own once, got up in a restaurant, went to the table next door, lifted her little shirt and said, "See my tummy? No belly button!" That took some explaining, lol.

With Abby only being 19 months, you have time on your side. You still have 3 years before she'll be in k-garten at least. As far as pre-school/daycare? My experience is that kids that age just plain don't care. They just see someone to play with and have fun with. They don't see the differences. Maybe the world should take lessons from our youngest of the population :)

*hugs* to you. I know its hard. I've had since I was 20 weeks pregnant with Grace to stress over this very issue and I've for the most part either let it go, or figure we'll cross that bridge when we get to it.

Jane

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  • 2 weeks later...
Guest guest

Reading the posts everyday has been so informative! I form new questions in my

mind daily! With Kylie just hitting her 2nd birthday and realizing that her pant

size was 6-9 month in August and she is now in an 18 -24 month tells me she's

grown tremendously since we noticed her curve (first week in August) and I'm

worried we have missed her best growth window ... However, the posts here have

solidified my belief that I just need to continue to stay positive and not allow

my worries to consume my energy since we are on a path to treatment.

, I'm a little late but I agree with some of the comments made here in

that peers tend to be much more supportive when educated. I have an 18 year old

who stutters quite severely and he has never once been made fun of by his peers.

Even when he started High School I was nervous since it would not be just the

kids who was used to him. He's had no issues.

I also have Deaf parents. I've had friends my entire life ready to take on

anyone who made fun of my parents and it only happened once, 5th grade and by

then I was confident enough to take on the biggest bully in our school and I

walked away a foot taller and he was ready to crawl in a hole and I only used my

confident words to tell him all the things my parents could do that he never

would.

I look at my Kylie with her crooked spine, at 2 years old she is oblivious that

its crooked and I think the attitude of the people round her will help shape her

perspective.

Thanks everyone for your participation on this list! Its such a peaceful place!

:)

Becky

- Re: Brace Question

Sent: Mar 17, 2011 12:42 PM

  Hi ,   I'd have to agree with Tasha, let the whole thing play out.  Our

little man started casting at 14 months.  Over the last 4 1/2 years he has had 9

casts and is currently in his 6th/7th braces (one daytime and one nighttime). 

I, too, worried alot about school and what the other kids would say.  The one

thing I have found over the last 6 months of his Kindergarten is that HE is

comfortable with who HE is.  One of the boys once at his daycare told me that he

was going to tell his mommy that he wanted a brace (like Noahs) :o)  That made

my heart feel good.  Noah always shows everyone his brace when he gets a new

one, and lets people know why he has to wear it (he has a crooked back, in his

words) lol! We have never hid the casts or braces from anyone, it's just part of

who he is.  We do get some strange looks from people sometimes and questions, we

just try (politely) to explain the situation.  Noah is not so inlove with his

new nighttime brace, as it is tight and different from what he is use to, but he

did take it to school on Tuesday for Show and Tell.  We have always treated Noah

as a normal child, not giving into the 'Oh, my back hurts, I can't do that'. 

However, we do let him know that there is something 'Special' about him that

most kids dont get to experience.  Believe me, it's not always easy....but, your

child will absolutely AMAZE you!  On a different note, we did choose to put Noah

into a Private School as I like the parent interest, small classes and going

through school with the same classmates year after year.  My husband has two

gals that he went to school with that are teacher and they said they both have

" special' kids in their classes and that they believe it's best to just start

them and let the other kids know the situation.  They both said the other kids

are very good with the 'special' kids.  Nice to hear, e specially from a

teachers point of view. Hope that helps. Noah 5yrs 81/2 mo 80* to

11*(daytime brace) 3*(nighttime brace), 9 casts 6/7 brace  SLC --- On Thu,

3/17/11, T

Becky Stuckless,

Sign Language Interpreter

Doug Reimneitz

519.818.3203

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Hei everyone.I just want to say, stay positive no matter what. Of course there are different situations, but Id like to write our experience from time in casts and braces. Our son Antoni was 22months old when got his first cast, (altogether he was one year in casts and one year in braces worn 23h per day) He had over 30degrees, I dont know exactly how much over, strange, but doctor said it was hard to measure it precisely, but anyhow, we were worrying if he was already too old to get totally straight?, and we were worried about reactions of other people/children to Antoni's cast. We were never hiding cast nor brace from the other people. They were sometimes asking about it, so we were telling what was it.

Cast was put hight untill his ears and was visible even with winter jacked on. I felt so sorry watching my boy walking in it, he couldn't sit at all, we didnt see his skin for a year (new casts were put immediately after taking off the old ones under anesthesia) but Antoni seemed to be OK with that. He got used to casts amazingly well. I dont say that cast was not a problem, of course it was, it got wet many times and stinked horribly and limited moving, but in general it didnt look to be tragedy to Antoni. He had no choice and accepted it. He was playing with kids and had fun as the other children. Couldnt swim of course but there were other things to do. I think that we parents were experiencing more stress with the treatment than our boy.

With brace it was much easier but also Antoni was older, so we expected some change in his attitude to the situation, but he was showing his brace to the other children in kindergarten, he was never ashamed of this. We told him brace was 'cool' and that he was a special child. It worked:-) And to me worked this group, it helped really a lot. I can never thank enough to all parents writing here.

After two years Antoni was 8degrees and doctor said he didnt need any brace anymore. Now he is some few degrees, doctor said it's not essential at all.I wish you all to get your children straight and healthy soon and without problems, I cross fingers,

Magdalena, mother of Antoni (now 5years old)2011/3/26 <dougandbecky@...>

Reading the posts everyday has been so informative! I form new questions in my mind daily! With Kylie just hitting her 2nd birthday and realizing that her pant size was 6-9 month in August and she is now in an 18 -24 month tells me she's grown tremendously since we noticed her curve (first week in August) and I'm worried we have missed her best growth window ... However, the posts here have solidified my belief that I just need to continue to stay positive and not allow my worries to consume my energy since we are on a path to treatment.

, I'm a little late but I  agree with some of the comments made here in that peers tend to be much more supportive when educated. I have an 18 year old who stutters quite severely and he has never once been made fun of by his peers. Even when he started High School I was nervous since it would not be just the kids who was used to him. He's had no issues.

I also have Deaf parents. I've had friends my entire life ready to take on anyone who made fun of my parents and it only happened once, 5th grade and by then I was confident enough to take on the biggest bully in our school and I walked away a foot taller and he was ready to crawl in a hole and I only used my confident words to tell him all the things my parents could do that he never would.

I look at my Kylie with her crooked spine, at 2 years old she is oblivious that its crooked and I think the attitude of the people round her will help shape her perspective.

Thanks everyone for your participation on this list! Its such a peaceful place! :)

Becky

- Re: Brace Question

Sent: Mar 17, 2011 12:42 PM

  Hi ,   I'd have to agree with Tasha, let the whole thing play out.  Our little man started casting at 14 months.  Over the last 4 1/2 years he has had 9 casts and is currently in his 6th/7th braces (one daytime and one nighttime).  I, too, worried alot about school and what the other kids would say.  The one thing I have found over the last 6 months of his Kindergarten is that HE is comfortable with who HE is.  One of the boys once at his daycare told me that he was going to tell his mommy that he wanted a brace (like Noahs) :o)  That made my heart feel good.  Noah always shows everyone his brace when he gets a new one, and lets people know why he has to wear it (he has a crooked back, in his words) lol! We have never hid the casts or braces from anyone, it's just part of who he is.  We do get some strange looks from people sometimes and questions, we just try (politely) to explain the situation.  Noah is not so inlove with his new nighttime brace, as it is tight and different from what he is use to, but he did take it to school on Tuesday for Show and Tell.  We have always treated Noah as a normal child, not giving into the 'Oh, my back hurts, I can't do that'.  However, we do let him know that there is something 'Special' about him that most kids dont get to experience.  Believe me, it's not always easy....but, your child will absolutely AMAZE you!  On a different note, we did choose to put Noah into a Private School as I like the parent interest, small classes and going through school with the same classmates year after year.  My husband has two gals that he went to school with that are teacher and they said they both have " special' kids in their classes and that they believe it's best to just start them and let the other kids know the situation.  They both said the other kids are very good with the 'special' kids.  Nice to hear, e specially from a teachers point of view. Hope that helps. Noah 5yrs 81/2 mo 80* to 11*(daytime brace) 3*(nighttime brace), 9 casts 6/7 brace  SLC --- On Thu, 3/17/11, T

Becky Stuckless,

Sign Language Interpreter

Doug Reimneitz

519.818.3203

------------------------------------

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Well said! Thank you for sharing that story. Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: "dougandbecky@..." <dougandbecky@...>infantile scoliosis treatment Sent: Sat, March 26, 2011 8:48:49

AMSubject: Re: Brace Question

Reading the posts everyday has been so informative! I form new questions in my mind daily! With Kylie just hitting her 2nd birthday and realizing that her pant size was 6-9 month in August and she is now in an 18 -24 month tells me she's grown tremendously since we noticed her curve (first week in August) and I'm worried we have missed her best growth window ... However, the posts here have solidified my belief that I just need to continue to stay positive and not allow my worries to consume my energy since we are on a path to treatment. , I'm a little late but I agree with some of the comments made here in that peers tend to be much more supportive when educated. I have an 18 year old who stutters quite severely and he has never once been made fun of by his peers. Even when he started High School I was nervous since it would not be just the kids who was used to him. He's had no issues. I also have Deaf parents. I've had

friends my entire life ready to take on anyone who made fun of my parents and it only happened once, 5th grade and by then I was confident enough to take on the biggest bully in our school and I walked away a foot taller and he was ready to crawl in a hole and I only used my confident words to tell him all the things my parents could do that he never would. I look at my Kylie with her crooked spine, at 2 years old she is oblivious that its crooked and I think the attitude of the people round her will help shape her perspective. Thanks everyone for your participation on this list! Its such a peaceful place! :)Becky------Original Message------From: HannahSender: infantile scoliosis treatment To: infantile scoliosis treatment Replyinfantile scoliosis treatment Subject: Re: Brace QuestionSent: Mar 17, 2011 12:42 PM Hi , I'd have to agree with Tasha, let the whole thing play out. Our little man started casting at 14 months. Over the last 4 1/2 years he has had 9 casts and is currently in his 6th/7th braces (one daytime and one nighttime). I, too, worried alot about school and what the other kids would say. The one thing I have found over the last 6 months of his Kindergarten is that HE is comfortable with who HE is. One of the boys once at his daycare told me that he was going to tell his mommy that he wanted a brace (like Noahs) :o) That made my heart feel good. Noah

always shows everyone his brace when he gets a new one, and lets people know why he has to wear it (he has a crooked back, in his words) lol! We have never hid the casts or braces from anyone, it's just part of who he is. We do get some strange looks from people sometimes and questions, we just try (politely) to explain the situation. Noah is not so inlove with his new nighttime brace, as it is tight and different from what he is use to, but he did take it to school on Tuesday for Show and Tell. We have always treated Noah as a normal child, not giving into the 'Oh, my back hurts, I can't do that'. However, we do let him know that there is something 'Special' about him that most kids dont get to experience. Believe me, it's not always easy....but, your child will absolutely AMAZE you! On a different note, we did choose to put Noah into a Private School as I like the parent interest, small classes and going through

school with the same classmates year after year. My husband has two gals that he went to school with that are teacher and they said they both have "special' kids in their classes and that they believe it's best to just start them and let the other kids know the situation. They both said the other kids are very good with the 'special' kids. Nice to hear, e specially from a teachers point of view. Hope that helps. Noah 5yrs 81/2 mo 80* to 11*(daytime brace) 3*(nighttime brace), 9 casts 6/7 brace SLC --- On Thu, 3/17/11, TBecky Stuckless, Sign Language InterpreterDoug Reimneitz519.818.3203 ------------------------------------

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