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Congrats!!! That gives parents like me just beginning this journey hope. Thanks

for sharing your story!

mom to Isaiah 10 mos old 38 degree curve and chiari I malformation

>

> Hi All,

> I have to say that this journey brings many ups and downs....but this last

trip to SLC brought up the biggest, unexpected high of all.  Jack curve is now

at a " zero " !!!  I want to shout it from the roof tops!!  I know that there are

many new families on the group lately that are getting casts for the first time

and are feeling sad, angry, a sense of loss...but hang in!  I was in your shoes

8 months ago and EDF casting works!!  Obviously there are many variables; age,

the appropriate pediatric casting table, your child's flexibility, a idiopathic

curve.....but when it is the right method...it does work!!  Thank you ,

thank you, thank you!!!  Thank God for Shriners and a very special MD.

>  

> OK now for the details....we got there and... thank you all for the advice

that the brace process takes time...a trim here a shave there.  We got to the

Crystal Inn about 3.5 hrs. later.  No pool...just too wiped out and needed to

get dinner and the routine going.  Jack did great with the brace and continues

to do very well.  We were told by the Dr. 20 hrs/day and that is what we are

sticking to.. (I still don't know where I heard 16 hrs)??  Jack wore the brace

all night and then we went back to the hospital for the " brace check " ...this is

when the miracle starts to happen.  The prosthetist (..he's the best) said

that I had the brace on correctly...which really is a lot harder than it

looks...still stresses me out...but I am hanging in!  Then they sent us to get

an xray in the brace.  My husband took Jack in  (because I am 5 months pregnant)

and when he came out he rolled his eyes as Jack was screaming....it did not go

well.  Then the

> xray tech (I swear she was wearing a halo) said... " it looks really good, you

have to come see this " !  I walked over to the machine and saw the very best xray

ever!!!  I thought 12 degrees looked good, which Jack was in the the 3rd cast

back in April (2months ago).  I grabbed my husband and Jack and we just had a

family/group hug as I bawled my eyes out!!  We then walked back to the exam

room.  The MD (he had a halo on too) said.... " Jack is measuring a zero. "    **

Now this Doctor is not one to sugar coat...if Jack was measuring a 2 he would

say that.  So when he said  zero, he meant it.  He looked just has

thrilled/shocked as the rest of us!  He said that we need to come back in 5

months to discuss weaning from the brace!  Now I don't really know what that

means.....he may have another brace made that he wears at night, is what I am

thinking, that is what (prothetist) mentioned.  That brings us to November

and I will have a 1 month

> old, but we are going to make it work. 

>  

> Sorry this is so long, just wanted to let the group know that there is light

at the end of the long and winding tunnel!!  I have been trying to get caught up

on the posts.  I hope that all is well with all of your children. 

>

> ~Krista

> Jack's Mom, Jack is 23 months old, in his 1st brace from Shriners Hospital in

Salt Lake City, Utah

>