Re: Chicago Shriner's Moms

[Guest guest]

We are fortunate and have family in the area, so we stay with them. Although,

this time we are doing day surgery, so I'm trying to figure out the

transportation logistics. I don't want to ask my sister-in-law to get up at

some ridiculous hour of the morning to drive us to the hospital , because she

just started a new job recently and I'd prefer to not take a cab. However, if I

rent a car that is a headache, because my sister in law doesn't have room in her

driveway for another car (she lives in the city), parking is pain...I'd have to

park on a city street a couple blocks from her house and I can't imagine walking

a couple blocks at 5 in the morning in the freezing cold to the car! So, I'll

either just take a cab or get a rental car and stay at a hotel for the night

before surgery just for the convenience. I can ask my sister-in-law if she

knows of any areas close to the hospital but in a safe neighborhood with nice

hotels.

Chicago Shriner's Moms

Which hotels do you like staying at, if you go that route?

We've stayed at a different one every time and I just can't find one

that works for us.

There are SO many, but we like to be as close to the hosptial as

possible (which isn't really a hotel-y area, as I'm sure you've

noticed). So, we usually stay near O'hare - but none of them have

internet or attached/covered parking, which we like. Last time we had

to walk through some slippery ice and in misty rain just to get into

the hotel - yuck!

Any ideas?

Thanks,

Sandi

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

________________________________________________________________________________\

____

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http://www.yahoo.com/r/hs

[Guest guest]

,

How old is your son, again?

S

[Guest guest]

15 months old.

Re: Chicago Shriner's Moms

,

How old is your son, again?

S

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[Guest guest]

Ah, so you will be first!

Those early mornings are a nightmare, aren't they?

[Guest guest]

Is that how it works? Youngest first? Yeah, I'm not a morning person

especially in the cold (I'm a native Floridian

Re: Chicago Shriner's Moms

Ah, so you will be first!

Those early mornings are a nightmare, aren't they?

________________________________________________________________________________\

____

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[Guest guest]

Yes, typically it's youngest first. (Unless someone has a health

problem or something).

Then again, I'm not sure of ANYTHING anymore up there. (Sense my

frustration today?)

[Guest guest]

Sandi-

Good luck with your local doctor education. That is great you are doing it. I

have tried it with a local ortho here (DVD, brochure, publications, etc.) with

less than enthusiastic response, but had great success with our pulmonologist,

who is now spreading the word among her colleagues.

We have alternated between staying in a hotel and staying with friends in the

city. It is hard because we have to get up so early and we always end up waking

their daughter (who is Jack and Sophia's age). We can't afford a hotel each

time, but are trying not to wear out our welcome with our friends either.

The closest ones we stayed at were Carlton and Write Inn. However, both were

very small and no modern amenities. During an Indian summer night in October,

our room at the Write Inn was 85 degrees because they had shut down the AC for

the season and said there was nothing they could do but open the screenless

windows (which we had already done). We had to pack everything back up and

leave because the heat was making all three of us sick to our stomachs. The

Carlton was a little better but nothing great and very small suites. We are

going to try out the O'Hare area this time and are booked for Marriott

SpringHill Suites on West Higgins. They have suites with kitchens, free high

speed internet, free parking, and free breakfast for a Shriner's rate of

$89/night. Have you stayed there? Not sure how far away that free parking is,

but we will find out 1/27 and can let you know how it goes.

I hope Jack is holding up OK in that tight cast. I tried the pliers last night

on Sophia's. Her hip bones are raw and she has spots where the cast is pinching

her around the stomach cutout that have broken the skin. We have never had her

out grow a cast before, so not sure what to do other than Motrin and Aquaphor.

Her belly button is starting to disappear below the cutout now, but her hips

still aren't in the clear because of how low this cast is (I think the lowest

one to date). I contacted the local ortho and will have them cut her out of it

next Friday (1/25). There is no way she would be able to sit in the carseat all

the way to Chicago. 15 minutes and she is crying from the sores on her hip

bones. I am really hoping you and hear back from soon. You may try

, the OR scheduling person who has been calling me back when I leave

messages for lately.

Thinking of you both and wishing you the best!

Tina

Chicago Shriner's Moms

Which hotels do you like staying at, if you go that route?

We've stayed at a different one every time and I just can't find one

that works for us.

There are SO many, but we like to be as close to the hosptial as

possible (which isn't really a hotel-y area, as I'm sure you've

noticed). So, we usually stay near O'hare - but none of them have

internet or attached/covered parking, which we like. Last time we had

to walk through some slippery ice and in misty rain just to get into

the hotel - yuck!

Any ideas?

Thanks,

Sandi

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

[Guest guest]

Oh gosh - that's such a great point - I had forgotten how long he'd

have to be in the car. He can only handle about 30 minutes a time

right now.

Ahh! What are we going to do in FOUR WEEKS!

We've actually stayed at Spring Hill!! That's where we stayed - um -

not last time, the time before. It's nice. The reception lobby area

is very nice. There is a little gift shop there that sells some small

toys and sundries. Outback Steakhouse is attached through the lobby,

if I recall correctly.

The room we had at Spring Hill was really great, don't get me wrong.

When you first walked in there was a kitchenette on the left with a

mini fridge and microwave. There's a big marble vanity then the

bathroom (typical small hotel bathroom tub, but good enough for a nice

bath out of cast). There's a sleeper sofa in the first area with a

coffee table and then the bedroom just past that over by the bathroom.

Everything was in good condition with nice bedding and everything.

However, the problem for us was the parking (once again). They had

lot parking that was unsupervised, which made me a little nervous.

So, we asked about the garage, which was mentioned on a post, and they

said you just use your key card to park down there. It was SUPER

creepy. It was a very raw and unfinished and there was a huge clunky

metal door that closed behind you. Very much isolated and dark down

there. I was terribly uncomfortable and when we drove back that

evening after dinner, I had park it downstairs after dropping us

off at the front door. There was also no parking on the main lot - I

assume because Outback was a hopping place and all the customers there

had parked on the lot.

There's a nice supermarket around the corner called Dominick's - they

have really great stuff there (anything we ever need) and a Starbucks

inside.

I think we actually may end up going back to Spring Hill because

everything else is twice as much per night, didn't include internet or

parking (we paid $20 per day - no in and out privileges at Renaissance

O'Hare).

So, since we just pretty much sleep there I'll have to reconsider.

The rate is fantastic - and can just drop us off at the door and

go through the basement parking.

Oh - and do you have a local Shriner's temple? Not a hospital, but

the masonic temple, I think it's called? Our local Shriner's hospital

put us in touch with our community's temple and they reimburse our

travel expenses. We JUST found this out during our last cast,

submitted our receipts, and within a couple weeks they mailed us a

check. It was SUCH a relief in a time when things were getting

absurdly tight. We didn't have the hotel fee because we used points

and we had a gift card from a relative for part of our gas, but

getting a huge chunk of what we paid out of pocket was fantastic.

They were super nice when called and spoke with them and said

that was what they had the program for - to get people to a Shriner's

for treatment. They said as long as they have the money left in their

budget that month, they're always happy to reimburse travel costs

(food, fuel, and hotel). What a huuuge blessing that is! I don't

want to count on it for every trip, but it does take a big burden off

our shoulders. (And some day we will repay the generosity of the

Shriner's in threefold, we hope!)

spoke with when she called last time and he stressed " That

is the SOONEST possible time we can get? " and she said yes. So, I

guess we're stuck. It's so frustrating!

I'm glad to hear Sophia has some relief. Thinking of you often!

Sandi

[Guest guest]

Also Sandi - is there anywhere else you can go? Is there anywhere

else that can take you sooner? Just a thought.

-

>

> Oh gosh - that's such a great point - I had forgotten how long he'd

> have to be in the car. He can only handle about 30 minutes a time

> right now.

>

> Ahh! What are we going to do in FOUR WEEKS!

>

>

> We've actually stayed at Spring Hill!! That's where we stayed - um -

> not last time, the time before. It's nice. The reception lobby area

> is very nice. There is a little gift shop there that sells some small

> toys and sundries. Outback Steakhouse is attached through the lobby,

> if I recall correctly.

>

> The room we had at Spring Hill was really great, don't get me wrong.

> When you first walked in there was a kitchenette on the left with a

> mini fridge and microwave. There's a big marble vanity then the

> bathroom (typical small hotel bathroom tub, but good enough for a nice

> bath out of cast). There's a sleeper sofa in the first area with a

> coffee table and then the bedroom just past that over by the bathroom.

> Everything was in good condition with nice bedding and everything.

>

> However, the problem for us was the parking (once again). They had

> lot parking that was unsupervised, which made me a little nervous.

> So, we asked about the garage, which was mentioned on a post, and they

> said you just use your key card to park down there. It was SUPER

> creepy. It was a very raw and unfinished and there was a huge clunky

> metal door that closed behind you. Very much isolated and dark down

> there. I was terribly uncomfortable and when we drove back that

> evening after dinner, I had park it downstairs after dropping us

> off at the front door. There was also no parking on the main lot - I

> assume because Outback was a hopping place and all the customers there

> had parked on the lot.

>

> There's a nice supermarket around the corner called Dominick's - they

> have really great stuff there (anything we ever need) and a Starbucks

> inside.

>

> I think we actually may end up going back to Spring Hill because

> everything else is twice as much per night, didn't include internet or

> parking (we paid $20 per day - no in and out privileges at Renaissance

> O'Hare).

>

> So, since we just pretty much sleep there I'll have to reconsider.

> The rate is fantastic - and can just drop us off at the door and

> go through the basement parking.

>

> Oh - and do you have a local Shriner's temple? Not a hospital, but

> the masonic temple, I think it's called? Our local Shriner's hospital

> put us in touch with our community's temple and they reimburse our

> travel expenses. We JUST found this out during our last cast,

> submitted our receipts, and within a couple weeks they mailed us a

> check. It was SUCH a relief in a time when things were getting

> absurdly tight. We didn't have the hotel fee because we used points

> and we had a gift card from a relative for part of our gas, but

> getting a huge chunk of what we paid out of pocket was fantastic.

> They were super nice when called and spoke with them and said

> that was what they had the program for - to get people to a Shriner's

> for treatment. They said as long as they have the money left in their

> budget that month, they're always happy to reimburse travel costs

> (food, fuel, and hotel). What a huuuge blessing that is! I don't

> want to count on it for every trip, but it does take a big burden off

> our shoulders. (And some day we will repay the generosity of the

> Shriner's in threefold, we hope!)

>

> spoke with when she called last time and he stressed " That

> is the SOONEST possible time we can get? " and she said yes. So, I

> guess we're stuck. It's so frustrating!

>

> I'm glad to hear Sophia has some relief. Thinking of you often!

> Sandi

>

[Guest guest]

Not really.

I'm still waiting to hear back from the local orthopaedic surgeon that

I'm trying to recruit, but that's all I've got around here.

>

>

> Also Sandi - is there anywhere else you can go? Is there anywhere

> else that can take you sooner? Just a thought.

>

[Guest guest]

I think the local Shriners will come to the house and pick you up--I am not sure

who you should call and ask but I know they do this for people.

________________________________

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of Dolley

Sent: Wednesday, January 16, 2008 4:20 PM

To: infantile_scoliosis

Subject: Re: Chicago Shriner's Moms

We are fortunate and have family in the area, so we stay with them. Although,

this time we are doing day surgery, so I'm trying to figure out the

transportation logistics. I don't want to ask my sister-in-law to get up at some

ridiculous hour of the morning to drive us to the hospital , because she just

started a new job recently and I'd prefer to not take a cab. However, if I rent

a car that is a headache, because my sister in law doesn't have room in her

driveway for another car (she lives in the city), parking is pain...I'd have to

park on a city street a couple blocks from her house and I can't imagine walking

a couple blocks at 5 in the morning in the freezing cold to the car! So, I'll

either just take a cab or get a rental car and stay at a hotel for the night

before surgery just for the convenience. I can ask my sister-in-law if she knows

of any areas close to the hospital but in a safe neighborhood with nice hotels.

Chicago Shriner's Moms

Which hotels do you like staying at, if you go that route?

We've stayed at a different one every time and I just can't find one

that works for us.

There are SO many, but we like to be as close to the hosptial as

possible (which isn't really a hotel-y area, as I'm sure you've

noticed). So, we usually stay near O'hare - but none of them have

internet or attached/covered parking, which we like. Last time we had

to walk through some slippery ice and in misty rain just to get into

the hotel - yuck!

Any ideas?

Thanks,

Sandi

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

__________________________________________________________

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs <http://www.yahoo.com/r/hs>

[Guest guest]

Hi,

I just wanted to share that I got a call from today. She said

she has been in clinic all week 8-5 Mon-Fri and trying her hardest

to return everyone's calls between patients.

Max's surgery is scheduled for March 4. He will get his cast cut-off

the week of 2/18 and a CT done that week. The follwowing week we

will see Dr. Sturm to finalize surgery and get questions answered.

We are leaning towards the VEPTR after much thought.

Thank you everyone for your continued support, thoughts, and wishes.

Aekta

>

> I think the local Shriners will come to the house and pick you up--

I am not sure who you should call and ask but I know they do this

for people.

>

> ________________________________

>

> From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of

Dolley

> Sent: Wednesday, January 16, 2008 4:20 PM

> To: infantile_scoliosis

> Subject: Re: Chicago Shriner's Moms

>

>

>

> We are fortunate and have family in the area, so we stay with

them. Although, this time we are doing day surgery, so I'm trying to

figure out the transportation logistics. I don't want to ask my

sister-in-law to get up at some ridiculous hour of the morning to

drive us to the hospital , because she just started a new job

recently and I'd prefer to not take a cab. However, if I rent a car

that is a headache, because my sister in law doesn't have room in

her driveway for another car (she lives in the city), parking is

pain...I'd have to park on a city street a couple blocks from her

house and I can't imagine walking a couple blocks at 5 in the

morning in the freezing cold to the car! So, I'll either just take a

cab or get a rental car and stay at a hotel for the night before

surgery just for the convenience. I can ask my sister-in-law if she

knows of any areas close to the hospital but in a safe neighborhood

with nice hotels.

>

> Chicago Shriner's Moms

>

> Which hotels do you like staying at, if you go that route?

>

> We've stayed at a different one every time and I just can't find

one

> that works for us.

>

> There are SO many, but we like to be as close to the hosptial as

> possible (which isn't really a hotel-y area, as I'm sure you've

> noticed). So, we usually stay near O'hare - but none of them have

> internet or attached/covered parking, which we like. Last time we

had

> to walk through some slippery ice and in misty rain just to get

into

> the hotel - yuck!

>

> Any ideas?

>

> Thanks,

> Sandi

>

> --

> Mom to Madison, Skylar, on, Piper, & - diagnosed with

> infantile scoliosis at 10 months with a 70° right thoracic curve.

> Currently undergoing serial casting.

>

> __________________________________________________________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs <http://www.yahoo.com/r/hs>

>

>

[Guest guest]

Oh, Aekta! I'm so glad you have a date!!! I'm sure it's much more

final to have that number ahead of you, but I hope that this helps you

to plan more accordingly.

We will continue to think of and pray for you all.

Sandi

[Guest guest]

,

You are correct. If someone needs a ride to a Shriners Hospital the

first thing to do is speak to the appropriate person at that

particular hospital - it is usually someone in Social Services.

They will give you a phone number for the person from the nearest

Shriners temple who is in charge of arranging rides.

The last two times we went to Philadelphia, the Shriners picked me

and my son up at our door (we live in NY) and they were wonderful.

Best,

>

> I think the local Shriners will come to the house and pick you up--

I am not sure who you should call and ask but I know they do this for

people.

>

> ________________________________

>

> From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of

Dolley

> Sent: Wednesday, January 16, 2008 4:20 PM

> To: infantile_scoliosis

> Subject: Re: Chicago Shriner's Moms

>

>

>

> We are fortunate and have family in the area, so we stay with them.

Although, this time we are doing day surgery, so I'm trying to figure

out the transportation logistics. I don't want to ask my sister-in-

law to get up at some ridiculous hour of the morning to drive us to

the hospital , because she just started a new job recently and I'd

prefer to not take a cab. However, if I rent a car that is a

headache, because my sister in law doesn't have room in her driveway

for another car (she lives in the city), parking is pain...I'd have

to park on a city street a couple blocks from her house and I can't

imagine walking a couple blocks at 5 in the morning in the freezing

cold to the car! So, I'll either just take a cab or get a rental car

and stay at a hotel for the night before surgery just for the

convenience. I can ask my sister-in-law if she knows of any areas

close to the hospital but in a safe neighborhood with nice hotels.

>

> Chicago Shriner's Moms

>

> Which hotels do you like staying at, if you go that route?

>

> We've stayed at a different one every time and I just can't find one

> that works for us.

>

> There are SO many, but we like to be as close to the hosptial as

> possible (which isn't really a hotel-y area, as I'm sure you've

> noticed). So, we usually stay near O'hare - but none of them have

> internet or attached/covered parking, which we like. Last time we

had

> to walk through some slippery ice and in misty rain just to get into

> the hotel - yuck!

>

> Any ideas?

>

> Thanks,

> Sandi

>

> --

> Mom to Madison, Skylar, on, Piper, & - diagnosed with

> infantile scoliosis at 10 months with a 70° right thoracic curve.

> Currently undergoing serial casting.

>

> __________________________________________________________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs <http://www.yahoo.com/r/hs>

>

>