St. Louis & Dr. Dobbs

[Guest guest]

Hi -

Has anyone here traveled from far away to St. Louis to see Dr. Dobbs? (not

local patients)

I know the ropes of Iowa City / Dr. Ponseti like the back of my hand, but

talking to the folks in St. Louis it all sounds very different and I'd like some

more insider details if possible.

Talking about the Haven House (aka Youth Bridge) - it sounds like it works

totally different from the RMD house in Iowa. RMD was pretty loose in what they

did and how things worked. If you needed a ride to the store, for example, you

could easily expect one with in an hour or two. One day a volunteer took a

group of us out to hit yard sales

About once a week some group came in and made a meal if you cared to join in

but other wise you fed yourself when you wanted and what you wanted. They had

huge closets full of donated food, etc., that families could use, cook their own

meals, do their own thing. I'm told the Haven House serves prepared meals twice

a day and no one seems able to tell me if there is any variances to that - if

there is food cupboards to work out of or anything. This makes a major

difference in the budget we need to plan, kwim? If we miss that scheduled meal

can we go make something for ourselves? Do we have to stock all our own

groceries or can we get creative with what they have donated on hand? I need to

feed 3 people - gotta know what that's going to cost. I think Haven House costs

a lot more per day than RMD, too.

I'm also told public tranportaion in St. Louis is poor. They said a shuttle

goes to the hospital twice a day, like 7 am and 4 pm. So like am I stuck at the

hospital ALL day long waiting for that 4 o'clock ride home? Yikes! My two

boys running loose in a hospital for several hours will have that policy changed

in a hurry! LOL!

Another thing - when I took the other boys to Iowa I stayed at the RMD for the

whole three weeks of treatment and no one batted an eye, in fact it was

expected...but in St. Louis they were quite shocked I'd even consdier that,

saying " most parents " come and go every week for treatments. Shrine is likely

not willing to help wiht the costs of us just camping out there to get it done -

but traveling back and forth constantly sounds like a major pain in the butt to

me - dh taking off work to drive us and wearing out the car with 1800 miles a

week and three days off work to do it, or looking for a van to take us, or

scheduling plane trips, taking off work to drive to the air port two days a

week.... that gets complicated pretty quick and frankly, I don't really want to

fly that often! I'm not sure I want to fly once. I've done Angel Flights in

the past.

Then if the public transportation is non-existant - we're stuck in the Haven

House 7 days a week and frankly they sound pretty strict if you ask me and I'd

be there with three kids by myself. I can't even seem to find out if we have

public or private rest rooms there. I read on the web at least one of the RMD

houses has a public restroom/shower...if that's the case, how do I send my 7

year old boy in to a public facility to bathe unattended, kwim?

I know if someone was going to Iowa I could totally set them up with all the

details and transportation options and places to go, how the RMD house

operates....but going to St. Louis I'm totally flyin blind and starting to dread

the whole thing. I don't mean to be looking gift horses in the mouth, it's not

that at all, honest - but by the same token it's becoming nerve wracking to just

be planning a trip in to oblivion with no information whatsoever to work with.

I need to know what it is like and how it works from a parent's point of view.

thanks.

shawnee