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Re: Dr Harbison's info

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oh yeah...one more question...

is there not a Mc House to stay at? Everyone keeps talking

about expensive hotels...usually the hospital has medical rates set up with

nearby hotels...is this not the case?

thanks

deb

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They do have a Mc House down by Cornell. However, it is VERY

difficult to get a room. We were very lucky when Alyssa had her surgery

there that the social worker was able to get us a room (we were there 3

weeks!) If I remember correctly, the hospital has to set it up for you. I

don't know if Sinai does this or not.

As for hospital rates at nearby hotels, that would the the Mt Sinai

Residence and the rates are 165 yr round I believe.

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of VisibleWorship@...

Sent: Sunday, February 12, 2006 11:06 AM

To: RSS-Support

Subject: Re: Dr Harbison's info

oh yeah...one more question...

is there not a Mc House to stay at? Everyone keeps talking

about expensive hotels...usually the hospital has medical rates set up with

nearby hotels...is this not the case?

thanks

deb

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Dr. Harbison has requested we not post her email address at the site due to

the fact that anyone could then get it. It cuts down on her SPAM if we do

not post the address. Email me privately and I will be happy to give it to

you. :-) Email is not the best avenue to reach her either. It may take

weeks to get a response if at all. Sinai requires a lot from her, and there

are simply only so many hours in a day. Her phone number is .

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of VisibleWorship@...

Sent: Sunday, February 12, 2006 11:01 AM

To: RSS-Support

Subject: Dr Harbison's info

Hi there

I have searched several hospital websites...Mt Sinai and Cornell where she

seems to have academic positions but not hospital ones. Can anyone send me

a

link...a phone number...an email address...a website? Anything?

thanks a bunch!

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia

and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo,

with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI

problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/)

(http://www.lifeofloveproject.org/)

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,

SORRY! I just saw your post about the email address!!! Great advice on

what to expect!!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of crosbysmommy

Sent: Sunday, February 12, 2006 7:04 PM

To: RSS-Support

Subject: Re: Dr Harbison's info

Hi there, I'm . I have Dr. Harbison's email for you. It is

madeline.harbison@... she is at Mount Sinai medical center in

New York City - you probably knew that already though. Good luck!

As everyone else has stated, before you spend all that money going

to another doctor you should absolutely see Dr. H. My husband and I

really didn't have the money to take our two kids (both SGA) but we

bit the bullet, put it on the credit card and I have not had one

regret since. Our visit was lengthy and very thorough. Just a word

of advice - send as much of your medical documentation as you can to

her in advance. Include things even if you think they might not be

relevant because I noticed at least in our case that even the most

trivial piece of info was sometimes very important. From what you

say it seems you have kept excellent documentation. She also wanted

things from thier birth records such as length, weight, and head

circ. at birth AND at discharge (assuming True had a hospital stay

in the nicu). Like I said good luck! Even if it takes us three

years to pay for this trip it will be worth it!

>

> Hi there

>

> I have searched several hospital websites...Mt Sinai and Cornell

where she

> seems to have academic positions but not hospital ones. Can

anyone send me a

> link...a phone number...an email address...a website? Anything?

>

> thanks a bunch!

>

> deb...mom to four fab adopted kiddos... (07.04.96-05.26.03)

with

> Mitochondrial Myopathy...G, 6, with High Functioning Autism,

Hypoglycemia and

> Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and

True 1yo, with

> Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed

GI problems

> plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice,

Oats and

> Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12

years to F--one

> swell guy!_ www.caringbridge.org/tn/wells/_

> (http://www.caringbridge.org/tn/wells/)

(http://www.lifeofloveproject.org/)

>

>

>

>

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We were able to stay at the Mc House in the summer of 2000, when

Dr. H. was still at Cornell. I believe that not long after that there was a

change in policy or something, and I don't think Dr. H.'s office can make the

arrangements / referral for her patients to stay at RMH. Maybe something to do

with the fact that the RMH has such a high demand because of the large number of

cancer kids coming to NYC for treatment, and cancer patients are their first

priority.

RMH isn't near Mt Sinai, where Dr. H. is now, and the Mt Sinai Residence is

the closest option - right next door. From what little I know, NYC is an

expensive place to visit, so what may be an average hotel price many other

locations just doesn't apply to NYC.

in Alaska

RSS-Support wrote:

Date: Sun, 12 Feb 2006 19:11:26 -0600

From: Dayna Carney

Subject: RE: Dr Harbison's info

They do have a Mc House down by Cornell. However, it is VERY

difficult to get a room. We were very lucky when Alyssa had her surgery

there that the social worker was able to get us a room (we were there 3

weeks!) If I remember correctly, the hospital has to set it up for you. I

don't know if Sinai does this or not.

As for hospital rates at nearby hotels, that would the the Mt Sinai

Residence and the rates are 165 yr round I believe.

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of VisibleWorship@...

Sent: Sunday, February 12, 2006 11:06 AM

To: RSS-Support

Subject: Re: Dr Harbison's info

oh yeah...one more question...

is there not a Mc House to stay at? Everyone keeps talking

about expensive hotels...usually the hospital has medical rates set up with

nearby hotels...is this not the case?

thanks

deb

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