Update on Devyn's 3rd brace

June 21, 2008

Hello everyone,

One month ago Devyn was at 0 degrees in his second brace. They

wanted to make one more brace to hold him at 0 degrees and make sure

it stayed there. Two days after Devyn's Ortho appointment we saw the

brace guy and Devyn had been molded for the third brace. The origianl

guy that molded devyn was going on vacation and said the other guy in

the office was going to finish Devyn's brace and we should recieve a

call in a couple days. Well there was some kind of miss communication

with the new brace. First it was not supposed to have a push in it

because the push actually made his spine curve the opposite direction

which meant that he was truely at 0 degrees but it had the push in it

any ways. Second it took them a month to make the new brace. The new

brace just didn't sit well with us, the way it fit him and the fact

that it had a push in it. When he had it on as tight as it would go I

could literally stick my entire hand up the side of the brace. It

just did not conform to his body the way it should have. We

immediatly made an appointment with his ortho. Devyn did not wear his

brace at all until we saw his Ortho. His Ortho was upset that the

brace was not made correctly and that it took so long for us to get

it. He xrayed Devyn last Thursday and he has progressed back to 9

degrees. We are going three weeks without a brace to see if he

continues to progress. I wanted to tell everyone our personal

experience so that it may help others in the future. Again this is

just our personal experience and I believe that the more educated we

as parents are with ET the better we can advocate for our children so

they can get the care they deserve. This was just a unfortunate miss

communication that has clearly opened my eyes on how important and

crucial time is. I hope I haven't offended anyone I just wanted to

share this experience.

Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1

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