Re: Noah Update - Heard back from SLC now

[Guest guest]

Hi eveyone,

We finally heard back from SLC and unfortunately I was right...he is a few

degrees worse. Noah measured at 18*.

Recap:

May '10 8* - stopped bracing

Nov '10 13*

May '11 18*

The doc says he's slowly steadily progressing. We need to go back into a brace.

He's recommending we start with night-time only bracing and see if that's good

enough to hold him. He's getting a Providence Bending Brace. I'm waiting for

the dates, but I hope they get us in ASAP.

We haven't told Noah yet. This is going to be tough and I need to build up

enough strength myself first. I need to be strong and positive when telling him

(and not a crying mess!) He's almost 6 years old now and can (and will) most

certainly have words to say about this. This is the kid that wrote an entire

song called " I hate my brace " at 4 years old. Lol.

Not sure why we're still struggling you guys. Although not perfect...I think we

did a lot of " rights " when it came to his scoliosis...

-He was treated before the age of 2 (22 mo. old)

-He started casting with a relatively " small " curve (36*)

-He went to an experienced doc, correct table, etc.

-He is the " sturdy phenotype " that is most succesful

-His rotation was gone after the 1st cast (and still is)

It just doesn't seem to make sense to me. I'll see if the doc has any theories.

Perhaps it's purely genetics? Who knows...my husband says it doesn't matter

" why. " And I don't think even the docs know why in some cases. So I guess I

shouldn't dwell on it, but it's tough right now.

Things will get easier of course and we'll all adjust to brace life again. I

just pray that the night-time bracing will hold him. Night-time only for the

next 12 years wouldn't be so bad. Certainly lots of kids here go through a lot

more and I'm just thankful that we're doing even this well.

I don't post much anymore as cast-life was long ago for us, but I do read the

updates whenever I can.

~

> Noah 5 years old - 9 months of casting in SLC & 2 1/2 years of bracing. Brace

free for 1 year now. Currently 18* and waiting for a new brace.

> And Mariella - Resolved Infantile Scoliosis.

> AND Elijah - so far so good!

>

> Hello,

> I know I haven't been active much lately - it's been so tough with bedrest and

now the new baby : ) Baby Elijah was born 3 weeks ago and I'm happy to say so

far his back looks good!

>

> I wanted to send a quick update on Noah. Noah has been completely brace-free

for 1 full year now. We stopped bracing May '10 at 8* and 8*. We had an x-ray

taken locally here in Minneapolis at the 6 month point and he measured 13* and

14*. Well it's been another 6 months so we went to Minneapolis Shriners today

for our latest round of x-rays. We did not meet with any docs there, so I do

not know his measurements yet. I fed-exed the x-ray to Salt Lake and will call

them to follow-up next week.

>

> The x-ray looked " ok " to me. I had them bring up the one taken 6 months ago

and line it up next to the one taken today. They look approximately the same.

If I had to guess though...I'd say he might be a few degrees worse. It's so

difficult to tell and even though I've seen too many x-rays in my lifetime

already! (Lol) I'm still not a doc...so I guess maybe I should be more

optomistic. I guess I'm just scared as it would be VERY difficult to leave the

brace-free lifestyle. Fingers crossed that doesn't happen.

>

> ~

> Noah 5 years old - 9 months of casting in SLC & 2 1/2 years of bracing.

Completely treatment free currently and at 13*.

> And Mariella - Resolved Infantile Scoliosis.

> AND Elijah - so far so good!!!

>

[Guest guest]

Thanks Tasha. We'll have to tell him soon as SLC should be calling us with the

dates tomorrow. I'm really hoping they can get us in fast. It's already been 1

1/2 months since the x-ray was taken so I don't want to wait another minute for

his back to just sit here getting worse.

I'll send you a private email if I need support after telling him. I'm kind of

suspecting that he might take it ok intitally since we'll tell him it's only at

night and that he doesn't have to wear it to school. It probably won't go so

smooth though once we're actually trying to put it on him every night. I foresee

tantrums and begging. I think it was easier when he was a casted baby and

didn't have the language skills to express his dissatisfaction yet : )

~

> >

> > Hello,

> > I know I haven't been active much lately - it's been so tough with bedrest

and

> >now the new baby : ) Baby Elijah was born 3 weeks ago and I'm happy to say so

> >far his back looks good!

> >

> > I wanted to send a quick update on Noah. Noah has been completely brace-free

> >for 1 full year now. We stopped bracing May '10 at 8* and 8*. We had an x-ray

> >taken locally here in Minneapolis at the 6 month point and he measured 13*

and

> >14*. Well it's been another 6 months so we went to Minneapolis Shriners today

> >for our latest round of x-rays. We did not meet with any docs there, so I do

not

> >know his measurements yet. I fed-exed the x-ray to Salt Lake and will call

them

> >to follow-up next week.

> >

> > The x-ray looked " ok " to me. I had them bring up the one taken 6 months ago

and

> >line it up next to the one taken today. They look approximately the same. If

I

> >had to guess though...I'd say he might be a few degrees worse. It's so

difficult

> >to tell and even though I've seen too many x-rays in my lifetime already!

(Lol)

> >I'm still not a doc...so I guess maybe I should be more optomistic. I guess

I'm

> >just scared as it would be VERY difficult to leave the brace-free lifestyle.

> >Fingers crossed that doesn't happen.

> >

> > ~

> > Noah 5 years old - 9 months of casting in SLC & 2 1/2 years of bracing.

> >Completely treatment free currently and at 13*.

> > And Mariella - Resolved Infantile Scoliosis.

> > AND Elijah - so far so good!!!

> >

>

[Guest guest]

,

You did everything right and Im sorry to hear that Noah has regressed a

bit. The night time bending brace may just do the trick as he is still so

low and they seem to work well for low curves. I sure hope Noah can get

by w/ the night time brace only and that it is an effective/corrective

approach for him as I know he doesnt want to wear a stinkin brace at his

age. (Liv wanted to have a huge bonfire with all her old braces).

The good thing is, Noah is a patient at an ET Center of Excellence and the

team there will always take a proactive approach to his scoli.

Please keep us posted.

HRH

> Hi eveyone,

> We finally heard back from SLC and unfortunately I was right...he is a few

> degrees worse. Noah measured at 18*.

>

> Recap:

> May '10 8* - stopped bracing

> Nov '10 13*

> May '11 18*

>

> The doc says he's slowly steadily progressing. We need to go back into a

> brace. He's recommending we start with night-time only bracing and see if

> that's good enough to hold him. He's getting a Providence Bending Brace.

> I'm waiting for the dates, but I hope they get us in ASAP.

>

> We haven't told Noah yet. This is going to be tough and I need to build

> up enough strength myself first. I need to be strong and positive when

> telling him (and not a crying mess!) He's almost 6 years old now and can

> (and will) most certainly have words to say about this. This is the kid

> that wrote an entire song called " I hate my brace " at 4 years old. Lol.

>

> Not sure why we're still struggling you guys. Although not perfect...I

> think we did a lot of " rights " when it came to his scoliosis...

>

> -He was treated before the age of 2 (22 mo. old)

> -He started casting with a relatively " small " curve (36*)

> -He went to an experienced doc, correct table, etc.

> -He is the " sturdy phenotype " that is most succesful

> -His rotation was gone after the 1st cast (and still is)

>

> It just doesn't seem to make sense to me. I'll see if the doc has any

> theories. Perhaps it's purely genetics? Who knows...my husband says it

> doesn't matter " why. " And I don't think even the docs know why in some

> cases. So I guess I shouldn't dwell on it, but it's tough right now.

>

> Things will get easier of course and we'll all adjust to brace life again.

> I just pray that the night-time bracing will hold him. Night-time only

> for the next 12 years wouldn't be so bad. Certainly lots of kids here go

> through a lot more and I'm just thankful that we're doing even this well.

>

> I don't post much anymore as cast-life was long ago for us, but I do read

> the updates whenever I can.

>

> ~

>> Noah 5 years old - 9 months of casting in SLC & 2 1/2 years of bracing.

>> Brace free for 1 year now. Currently 18* and waiting for a new brace.

>> And Mariella - Resolved Infantile Scoliosis.

>> AND Elijah - so far so good!

>

>

>

>>

>> Hello,

>> I know I haven't been active much lately - it's been so tough with

>> bedrest and now the new baby : ) Baby Elijah was born 3 weeks ago and

>> I'm happy to say so far his back looks good!

>>

>> I wanted to send a quick update on Noah. Noah has been completely

>> brace-free for 1 full year now. We stopped bracing May '10 at 8* and

>> 8*. We had an x-ray taken locally here in Minneapolis at the 6 month

>> point and he measured 13* and 14*. Well it's been another 6 months so

>> we went to Minneapolis Shriners today for our latest round of x-rays.

>> We did not meet with any docs there, so I do not know his measurements

>> yet. I fed-exed the x-ray to Salt Lake and will call them to follow-up

>> next week.

>>

>> The x-ray looked " ok " to me. I had them bring up the one taken 6 months

>> ago and line it up next to the one taken today. They look approximately

>> the same. If I had to guess though...I'd say he might be a few degrees

>> worse. It's so difficult to tell and even though I've seen too many

>> x-rays in my lifetime already! (Lol) I'm still not a doc...so I guess

>> maybe I should be more optomistic. I guess I'm just scared as it would

>> be VERY difficult to leave the brace-free lifestyle. Fingers crossed

>> that doesn't happen.

>>

>> ~

>> Noah 5 years old - 9 months of casting in SLC & 2 1/2 years of bracing.

>> Completely treatment free currently and at 13*.

>> And Mariella - Resolved Infantile Scoliosis.

>> AND Elijah - so far so good!!!

>>

>

>

>