Re: Minneapolis Shriners Update

November 19, 2010

You have been working on MN. for years and this is good to hear. It is so

reassuring to hear that parents in MN. will be referred to you & ET for proper

guidance. Now, less kiddos falling through the cracks and this is fabulous!

HRH

>

> The chief of staff in Minneapolis (Dr G) has been interested in starting

casting here for awhile now. I spoke to Dr G's care coordinator in regards to

WI, MN and IL casting this morning. Dr G is aware of Dr S's departure from

Chicago and considers it " a tremendous loss. " I made sure to express that Dr H

is continuing the casting program in Chicago and that they please continue to

refer candidates there. I also made them aware of the WI info that I rec'd from

Timmy and yesterday (thanks!)

> Unfortunately, Dr G has not started the procedure at Minneapolis Shriners yet.

According to the cc " he has too many irons in the fire right now, but still

plans on doing it. " She mentioned that his concentration lately has been on

receiving VEPTR certification and that the hospital will now be performing that

procedure.

> As someone who has been persistantly politely pushy for a non-operative

treatment...it was tough to hear that they've choosen to focus on an operative

treatment. (Not that VEPTR isn't important of course, but it's just frustrating

to keep hearing from SLC, Chicago and from Dr G himself that " Dr G is on board "

only to see it not come to fruitation over the years.

> The good news is...they will continue to refer patients. Which means that

hopefully all MN patients will be given the casting option that my child wasn't

originally given. They also had me register with their Parents Network as a

casting/bracing resource which means my name will be given out for any

Progressive Infantile Scoliosis parents looking for support. I'll be sure to

put them in contact with CAST/Chicago parents if I hear from them (as I've only

been to Chicago Shriners once.)

>

> ~

> Noah 5 years old

> 9 months of casting in SLC; 2 1/2 years of bracing; Currently treatment-free

at 8*

> And Mariella 1 yr old - resolved Infantile Scoliosis

>

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