Re: We're back! - staying at RMD

[Guest guest]

Well I don't want to step on any toes but I always sort of felt the suits ought

to be saved for those parents with really critically ill kids. Not to lessen

anyone's experience but club foot to me is almost like a pimple compared to what

you see other kids suffering from there with cancer and heart defects and brain

surgery or burn victims...

I was at the RMD for approximately 10 weeks total during 2000, with going

off and on for his treatments and ATTT - just me and a 2 year old. And then I

was there 3 weeks two years ago, me, who was 5 then, and Everett who was

new born.

I always found the design of the RMD nice - they don't put all the ammenities in

the rooms because they want to encourage parents to mingle with each other in

the commons areas, rather than hole up in their room alone with their grief and

problems turning in to depressions. I found other parents mostly loved having

my kids around, having my babies to hold and spoil because in 98% of the cases

their babies were in the hospital with some grave illness while mine only went

to see a doc once a week. Everyone was helpful and eager to help, people always

offered to watch on them for me if I ever needed them to for a moment. It was

refreshing that I had so much help that I certainly did not have at home!

I had to stay at a motel a few times, for a few days here and there while a RMD

room became available for us and to me, that plain stunk. I felt so

clausterphobic stuck in that room with no people to hang out with, no common

area to go visit in, couldn't leave the baby in the room for even a moment for

fear of it being a motel and motels just aren't the same as the RMD as far as

security, etc. Getting meals was a total pain in the butt because I would go

to the RMD kitchen in my house coat but I wouldn't be caught dead in a public

hotel " Contenential Breakfast " area in my house coat, kwim? Then lunch and

dinner of course you have to load them up and drive some place or live on crappy

tv dinners for weeks at a time staring at the same four walls.

I'd take the kids on lots of bus rides just to see the sites. The bus was free.

We'd get off here and there to look at things, too, and often I would pack a

sack lunch to ride the bus to the pedestrian mall to eat there when weather

permitted. It kept us all from going stir crazy, even the new born that Everett

was he enjoyed getting out.

I dunno - every person is different. And men of course are always a lot

different than women in these circumstances I think, no offense to them at all

but ... my own dh, the little bit he was there for a few days when he dropped

us off, well it drove him insane. I was ready to slap him for his bad mood up

there. I guess to me it was more like a vacation because you know how it's

always more fun to clean your friend's house than your own? I was doing all my

regular routine stuff but in a new setting which was a nice change of pace for

me. All he saw was gloom and doom and pacing the floors like a friggen caged

up animal who wanted no part of any of it. But, haha, that's kind of like what

he does at home if he ends up cooped in the house with me and the kids, too. He

feels totally misplaced.

I hope I don't sound offensive, because I just want your husband and baby to be

comfortable while they are away from home so what ever makes him comfortable

then I wish more power to him to achieve what will work for him - my own dh

would probably be satisfied in a motel all alone if he had to watch the kids

himself now that I think about it.

s.

Jenn Re: We're back!

Hey -He asked for a suite, but they said they didn't have any

available. They also told me that they save those for families with

bone marrow children and if he went in one, he'd have to move again

if someone else needed it.

He's been calling around and can get a hotel room with a microwave

and fridge for $60. The AF is reimbursing him for the hotel and

food, so he's seriously considering it! Like you said, it's so much

easier to be able to have all that stuff right there with a little

one. He said if I was there also it wouldn't be bad, but it's hard

by himself.

Jenn

> > > >

> > > > Jenn,

> > > > I'm glad you had a safe trip to Iowa! Yes, Dr. Ponseti

can

> > change

> > > the

> > > > casts every 5 days if the family is staying there for the

> > duration

> > > of

> > > > the treatment, or he'll do it every 7 days if they're

> driving

> > back

> > > and

> > > > forth. When was getting casts applied, we would

drive

> > there

> > > > every Sunday (from the U.P. of Michigan), have the appt.

on

> > Monday

> > > > morning, then drive back on Monday evening.

> > > > Were you initially getting care for Lucas in the Twin

Cities

> > area

> > > or

> > > > somewhere else in the state? Will your husband be staying

> at

> > the

> > > RMD

> > > > house? I'm guessing that he'll get to meet up with

> and

> > > > !

> > > > Please keep us posted on how things go!

> > > > Regards,

> > > > & (3-16-00, left clubfoot)

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

You-re right! Men are totally different- I think it sounds good, but

he's really worried about football this weekend (if you can believe

it)! He said he's really going to want to watch a lot of football

and there's ONLY 3 tvs at RMH. He did say over and over how it's a

great place for people with families who have to keep thier other

children occupied- but I guess it's just not for him.

Oh well....

Jenn

> > > > >

> > > > > Jenn,

> > > > > I'm glad you had a safe trip to Iowa! Yes, Dr.

Ponseti

> can

> > > change

> > > > the

> > > > > casts every 5 days if the family is staying there for

the

> > > duration

> > > > of

> > > > > the treatment, or he'll do it every 7 days if they're

> > driving

> > > back

> > > > and

> > > > > forth. When was getting casts applied, we would

> drive

> > > there

> > > > > every Sunday (from the U.P. of Michigan), have the

appt.

> on

> > > Monday

> > > > > morning, then drive back on Monday evening.

> > > > > Were you initially getting care for Lucas in the Twin

> Cities

> > > area

> > > > or

> > > > > somewhere else in the state? Will your husband be

staying

> > at

> > > the

> > > > RMD

> > > > > house? I'm guessing that he'll get to meet up with

>

> > and

> > > > > !

> > > > > Please keep us posted on how things go!

> > > > > Regards,

> > > > > & (3-16-00, left clubfoot)

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

He should move into a suite and he should ask this question, are they expecting

patients to come that would cause him to be bumped back to a regular room.

Worth it for sure.

volng8r1 wrote:

You-re right! Men are totally different- I think it sounds good, but

he's really worried about football this weekend (if you can believe

it)! He said he's really going to want to watch a lot of football

and there's ONLY 3 tvs at RMH. He did say over and over how it's a

great place for people with families who have to keep thier other

children occupied- but I guess it's just not for him.

Oh well....

Jenn

> > > > >

> > > > > Jenn,

> > > > > I'm glad you had a safe trip to Iowa! Yes, Dr.

Ponseti

> can

> > > change

> > > > the

> > > > > casts every 5 days if the family is staying there for

the

> > > duration

> > > > of

> > > > > the treatment, or he'll do it every 7 days if they're

> > driving

> > > back

> > > > and

> > > > > forth. When was getting casts applied, we would

> drive

> > > there

> > > > > every Sunday (from the U.P. of Michigan), have the

appt.

> on

> > > Monday

> > > > > morning, then drive back on Monday evening.

> > > > > Were you initially getting care for Lucas in the Twin

> Cities

> > > area

> > > > or

> > > > > somewhere else in the state? Will your husband be

staying

> > at

> > > the

> > > > RMD

> > > > > house? I'm guessing that he'll get to meet up with

>

> > and

> > > > > !

> > > > > Please keep us posted on how things go!

> > > > > Regards,

> > > > > & (3-16-00, left clubfoot)

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >