Re: finding out about Inn reservations

[Guest guest]

Thank you Tammy for the information i was wondering if I should call them or

make reservations on the internet. Now does the Inn just take you to the

hospital or does the shuttle take you to the stores and things like that?I wil

have to check everything out about arriving and depart to with the shuttle. When

I was their we spent probably about $275 or something like that on taxi services

that i just crazy. Who is Dr Lewey? Is he at the NIH? Well thanks for the info.

Sacora mom of Nicolas 12

Redmond OR

Tammy <rlw_124@...> wrote:

Our first visit we waited for someone to call us about all the info.

That did not happen. We called the Inn ourselves and told them our

name and when the appt was. Someone called a couple days later to let

us know we had a room. It is important you get your flight arrival

time and when you will fly out. We found out the shuttle from the

airport to the Inn only runs for certain times. The times are posted

on the Childrens Inn website. Another newbie thing, my husband and

sons flight left at 7:30am. They had to leave the Inn by 6:00 since it

was a 45 minute drive back to the airport. Shuttle did not run til

7:00, I think. $40.00 later for a cab they made it. Just one of the

things we learned. The Inn has a kitchen to make food too.

I am sorry if I ever seemed negative about NIH. I am scared and

protective. We have had so many nightmare doctors prior to our next to

Sainthood doctor we have now. I know that type of doctor is dime a

dozen and I have my guard up. Dr Lewey has been wonderful and has

responded to all of our needs for Clay with the most compasion. It is

more about me than them.

Congrats Sacora & on your appts-good luck.

Tammy, Mother of Clay 4 HIDS

[Guest guest]

Since we have an appointment at NIH as well, I would be hearing input on

this from some of you who have been to NIH. Nicki told me we would need

to have Jarrod at The Children's Inn by March 13 since his appointment is

March 14 at 8 AM. I never gave thought to the logistics of it. I guess I

thought the info would be in the packet I was told to expect. But any

tips from those who have been there before would help.

Thanks!

(SWFL)

Mother of Jarrod (3)

On Sat, 4 Feb 2006 07:39:01 -0800 (PST) Sacora Casselman

<sacoracasselman@...> writes:

Thank you Tammy for the information i was wondering if I should call them

or make reservations on the internet. Now does the Inn just take you to

the hospital or does the shuttle take you to the stores and things like

that?I wil have to check everything out about arriving and depart to with

the shuttle. When I was their we spent probably about $275 or something

like that on taxi services that i just crazy. Who is Dr Lewey? Is he at

the NIH? Well thanks for the info.

Sacora mom of Nicolas 12

Redmond OR

Tammy <rlw_124@...> wrote:

Our first visit we waited for someone to call us about all the info.

That did not happen. We called the Inn ourselves and told them our

name and when the appt was. Someone called a couple days later to let

us know we had a room. It is important you get your flight arrival

time and when you will fly out. We found out the shuttle from the

airport to the Inn only runs for certain times. The times are posted

on the Childrens Inn website. Another newbie thing, my husband and

sons flight left at 7:30am. They had to leave the Inn by 6:00 since it

was a 45 minute drive back to the airport. Shuttle did not run til

7:00, I think. $40.00 later for a cab they made it. Just one of the

things we learned. The Inn has a kitchen to make food too.

I am sorry if I ever seemed negative about NIH. I am scared and

protective. We have had so many nightmare doctors prior to our next to

Sainthood doctor we have now. I know that type of doctor is dime a

dozen and I have my guard up. Dr Lewey has been wonderful and has

responded to all of our needs for Clay with the most compasion. It is

more about me than them.

Congrats Sacora & on your appts-good luck.

Tammy, Mother of Clay 4 HIDS

[Guest guest]

said the same to me but I don't want to get there and no place to stay

I did a registration on the internet to be safe. I am suppose to be there on the

28 but I have 6to 10 hrs of flying. And I didn't know about the shuttle hrs too

so that I am gona check into cause my finance are not that great and I would

hate to pay for cab services as well. Let me know what you find out and I will

keep you posted too.

Sacora mom of Nicolas 12

Redmond OR

merryms@... wrote:

Since we have an appointment at NIH as well, I would be hearing input on

this from some of you who have been to NIH. Nicki told me we would need

to have Jarrod at The Children's Inn by March 13 since his appointment is

March 14 at 8 AM. I never gave thought to the logistics of it. I guess I

thought the info would be in the packet I was told to expect. But any

tips from those who have been there before would help.

Thanks!

(SWFL)

Mother of Jarrod (3)

On Sat, 4 Feb 2006 07:39:01 -0800 (PST) Sacora Casselman

<sacoracasselman@...> writes:

Thank you Tammy for the information i was wondering if I should call them

or make reservations on the internet. Now does the Inn just take you to

the hospital or does the shuttle take you to the stores and things like

that?I wil have to check everything out about arriving and depart to with

the shuttle. When I was their we spent probably about $275 or something

like that on taxi services that i just crazy. Who is Dr Lewey? Is he at

the NIH? Well thanks for the info.

Sacora mom of Nicolas 12

Redmond OR

Tammy <rlw_124@...> wrote:

Our first visit we waited for someone to call us about all the info.

That did not happen. We called the Inn ourselves and told them our

name and when the appt was. Someone called a couple days later to let

us know we had a room. It is important you get your flight arrival

time and when you will fly out. We found out the shuttle from the

airport to the Inn only runs for certain times. The times are posted

on the Childrens Inn website. Another newbie thing, my husband and

sons flight left at 7:30am. They had to leave the Inn by 6:00 since it

was a 45 minute drive back to the airport. Shuttle did not run til

7:00, I think. $40.00 later for a cab they made it. Just one of the

things we learned. The Inn has a kitchen to make food too.

I am sorry if I ever seemed negative about NIH. I am scared and

protective. We have had so many nightmare doctors prior to our next to

Sainthood doctor we have now. I know that type of doctor is dime a

dozen and I have my guard up. Dr Lewey has been wonderful and has

responded to all of our needs for Clay with the most compasion. It is

more about me than them.

Congrats Sacora & on your appts-good luck.

Tammy, Mother of Clay 4 HIDS

[Guest guest]

and Sacora, I can't help you with anything about the Inn since we are

within driving distance from NIH but as far as the doctors, I think that the way

it works for most patients is that if your child is accepted as a patient, he

or she is assigned to a 'Fellow'. These fellows are doctors in a 3 year program,

working their way towards pure research, which is their goal. The first year

they have to spend seeing patients, the second and third years they split their

time between doing research and seeing patients, with them gradually seeing less

patients and doing more research.

Ideally, you want to be assigned to a fellow just starting out, that way you

usually get to see the same one for a while. We have rotated our way through 2

fellows now, we just started seeing Dr. Coburn. She is a captain, in the army, I

believe. She reminds me alot of Janet , I really like her.

Pat Bombardier

---------------------------------

Brings words and photos together (easily) with

PhotoMail - it's free and works with .

[Guest guest]

We were just at NIH in November and stayed at the Children's Inn.

Our information for the Children's Inn was in the packet we

received, but when we arrived at the Inn, they had no information

regarding our arrival. They said it wasn't a problem, they had

plenty of available rooms, but it took a little while to get

registered into their system. We showed them our paperwork and they

paged Nicki (even though we arrived in the evening), and sorted it

all out. The same thing happened the next morning when we arrived at

the Clinical Center for our appointment, the registration office had

no information regarding our appointment. They also had to page

Nicki and get the paperwork. So we ended up having to wait around

for an extra 45 minutes or so (not easy with a hungry and tired 2

year old). So, I would say, it's probably a good idea to call the

Children's Inn and confirm your information to make sure they got

their paperwork.

Good luck!

am

> Our first visit we waited for someone to call us about all the

info.

> That did not happen. We called the Inn ourselves and told them

our

> name and when the appt was. Someone called a couple days later to

let

> us know we had a room. It is important you get your flight

arrival

> time and when you will fly out. We found out the shuttle from the

> airport to the Inn only runs for certain times. The times are

posted

> on the Childrens Inn website. Another newbie thing, my husband

and

> sons flight left at 7:30am. They had to leave the Inn by 6:00

since it

> was a 45 minute drive back to the airport. Shuttle did not run

til

> 7:00, I think. $40.00 later for a cab they made it. Just one of

the

> things we learned. The Inn has a kitchen to make food too.

>

> I am sorry if I ever seemed negative about NIH. I am scared and

> protective. We have had so many nightmare doctors prior to our

next to

> Sainthood doctor we have now. I know that type of doctor is dime

a

> dozen and I have my guard up. Dr Lewey has been wonderful and has

> responded to all of our needs for Clay with the most compasion.

It is

> more about me than them.

>

> Congrats Sacora & on your appts-good luck.

> Tammy, Mother of Clay 4 HIDS

>

>

>

>

>

>

>

[Guest guest]

I am so happy to hear that so many of you recently got calls from

and are getting appts. in March.

As for the Children's Inn - I made my appt. for January 24, 2006

with the NIH in mid-January, so I had to move pretty quickly on

travel arrangements, etc. said that she had to contact the

Children's Inn for our first visit and make the reservation, which

is true. However, I contacted the director and night manager on my

own via email shortly after making my appt with the NIH with ,

just to let them know who I was, when I was coming and to expect

's call etc. They were very appreciative of the advance

notice since I was going to be there at a VERY busy time. As it

turns out - did not contact the Children's Inn until 2 days

before my arrival. Had I not contacted them on my own, just to let

them know that I had an appt. and was coming the night of January

23, there would not have been a room for me as it was booked solid.

I did not make the reservation, but they " held " a room for me until

called with the necessary information.

My advice to anyone is to go ahead and look up the Children's Inn

online and go to the contacts page and contact the executive

director, night manager or anyone in management and simply introduce

yourself, tell them when you are coming and tell them that

Plass will be contacting them with the necessary information. That

way they get you into the computer and hold the room, etc.

Also for a detailed email on what our first time visit consisted of -

I posted a message on January 24 in the evening.

in Tampa. Mom to Jonah, almost 5 and probable , but

awaiting genetic tetsing results

> > Our first visit we waited for someone to call us about all the

> info.

> > That did not happen. We called the Inn ourselves and told them

> our

> > name and when the appt was. Someone called a couple days later

to

> let

> > us know we had a room. It is important you get your flight

> arrival

> > time and when you will fly out. We found out the shuttle from

the

> > airport to the Inn only runs for certain times. The times are

> posted

> > on the Childrens Inn website. Another newbie thing, my husband

> and

> > sons flight left at 7:30am. They had to leave the Inn by 6:00

> since it

> > was a 45 minute drive back to the airport. Shuttle did not run

> til

> > 7:00, I think. $40.00 later for a cab they made it. Just one

of

> the

> > things we learned. The Inn has a kitchen to make food too.

> >

> > I am sorry if I ever seemed negative about NIH. I am scared and

> > protective. We have had so many nightmare doctors prior to our

> next to

> > Sainthood doctor we have now. I know that type of doctor is

dime

> a

> > dozen and I have my guard up. Dr Lewey has been wonderful and

has

> > responded to all of our needs for Clay with the most compasion.

> It is

> > more about me than them.

> >

> > Congrats Sacora & on your appts-good luck.

> > Tammy, Mother of Clay 4 HIDS

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks to everyone who has given advice on the Inn and appointments. I

will contact the Inn and let them know when we are coming and hope that

the packet arrives soon :-)

(SWFL)

Mother of Jarrod (3)

[Guest guest]

--Hi Tammy

What did they do for clays first visit? How many days were you at

the hospital? You say ever case is different, I am just trying to

prepare for what type of test they do? Is your appointment a follow

up or first visit?

Thanks sacora and nicolas 12

- In , " Tammy " <rlw_124@...> wrote:

>

> Our first visit we waited for someone to call us about all the

info.

> That did not happen. We called the Inn ourselves and told them

our

> name and when the appt was. Someone called a couple days later to

let

> us know we had a room. It is important you get your flight

arrival

> time and when you will fly out. We found out the shuttle from the

> airport to the Inn only runs for certain times. The times are

posted

> on the Childrens Inn website. Another newbie thing, my husband

and

> sons flight left at 7:30am. They had to leave the Inn by 6:00

since it

> was a 45 minute drive back to the airport. Shuttle did not run

til

> 7:00, I think. $40.00 later for a cab they made it. Just one of

the

> things we learned. The Inn has a kitchen to make food too.

>

> I am sorry if I ever seemed negative about NIH. I am scared and

> protective. We have had so many nightmare doctors prior to our

next to

> Sainthood doctor we have now. I know that type of doctor is dime

a

> dozen and I have my guard up. Dr Lewey has been wonderful and has

> responded to all of our needs for Clay with the most compasion.

It is

> more about me than them.

>

> Congrats Sacora & on your appts-good luck.

> Tammy, Mother of Clay 4 HIDS

>

[Guest guest]

Sacora.

The initial visit for your child will include the FIRST day....

consultations with the fellow in charge of your child's medical issues...

then a visit with residents and which ever attending research doc is

there... could be Kastner could be another doc.

Then they normally send the child to the lab for blood and urine tests.

Initially we went last year for a day although with transportation it was 3

days.

I am unsure what they have planned for your second day however if I were

you with concerns as to knowing exact testing, you need to call Nikki ( I

know this can be difficult)

She IS the one scheduling the medical diagnostic studies for each child now.

We are scheduled for 3 days this time around. ph will be an outpatient.

(NOMID children are sometimes inpatients and sometimes outpatients)

I know we will be consulting with the doctor in charge of this study

initially and the fellows and residents initially since our study has been

switched... And I know about a few tests ph will undergo including going

under anesthesia for MRI's and Spinal taps... BUT our tests are SPECIFIC for

the NOMID study. I am hoping IF and WHEN we receive a packet it may have a

listing of our schedule, BUT if it does not I too will contact the infamous

NICOLE PLASS and find out the plan so I too can prepare my son. ph does

much better knowing what to expect.

God Bless

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Sacora,You need to call the in if you are a first timer! After your first time

you cna register online..... They will also help with shuttle info!

Re: finding out about Inn reservations

said the same to me but I don't want to get there and no place to

stay I did a registration on the internet to be safe. I am suppose to be there

on the 28 but I have 6to 10 hrs of flying. And I didn't know about the shuttle

hrs too so that I am gona check into cause my finance are not that great and I

would hate to pay for cab services as well. Let me know what you find out and I

will keep you posted too.

Sacora mom of Nicolas 12

Redmond OR

merryms@... wrote:

Since we have an appointment at NIH as well, I would be hearing input on

this from some of you who have been to NIH. Nicki told me we would need

to have Jarrod at The Children's Inn by March 13 since his appointment is

March 14 at 8 AM. I never gave thought to the logistics of it. I guess I

thought the info would be in the packet I was told to expect. But any

tips from those who have been there before would help.

Thanks!

(SWFL)

Mother of Jarrod (3)

On Sat, 4 Feb 2006 07:39:01 -0800 (PST) Sacora Casselman

<sacoracasselman@...> writes:

Thank you Tammy for the information i was wondering if I should call them

or make reservations on the internet. Now does the Inn just take you to

the hospital or does the shuttle take you to the stores and things like

that?I wil have to check everything out about arriving and depart to with

the shuttle. When I was their we spent probably about $275 or something

like that on taxi services that i just crazy. Who is Dr Lewey? Is he at

the NIH? Well thanks for the info.

Sacora mom of Nicolas 12

Redmond OR

Tammy <rlw_124@...> wrote:

Our first visit we waited for someone to call us about all the info.

That did not happen. We called the Inn ourselves and told them our

name and when the appt was. Someone called a couple days later to let

us know we had a room. It is important you get your flight arrival

time and when you will fly out. We found out the shuttle from the

airport to the Inn only runs for certain times. The times are posted

on the Childrens Inn website. Another newbie thing, my husband and

sons flight left at 7:30am. They had to leave the Inn by 6:00 since it

was a 45 minute drive back to the airport. Shuttle did not run til

7:00, I think. $40.00 later for a cab they made it. Just one of the

things we learned. The Inn has a kitchen to make food too.

I am sorry if I ever seemed negative about NIH. I am scared and

protective. We have had so many nightmare doctors prior to our next to

Sainthood doctor we have now. I know that type of doctor is dime a

dozen and I have my guard up. Dr Lewey has been wonderful and has

responded to all of our needs for Clay with the most compasion. It is

more about me than them.

Congrats Sacora & on your appts-good luck.

Tammy, Mother of Clay 4 HIDS

[Guest guest]

Well thank you I will do that. The NIH called today and got me register

and they are sending my package. They are sending me shuttle information. But i

will call them and get things ready.

Thanks so much

<gt4990@...> wrote:

Sacora,You need to call the in if you are a first timer! After your first

time you cna register online..... They will also help with shuttle info!

Re: finding out about Inn reservations

said the same to me but I don't want to get there and no place to

stay I did a registration on the internet to be safe. I am suppose to be there

on the 28 but I have 6to 10 hrs of flying. And I didn't know about the shuttle

hrs too so that I am gona check into cause my finance are not that great and I

would hate to pay for cab services as well. Let me know what you find out and I

will keep you posted too.

Sacora mom of Nicolas 12

Redmond OR

merryms@... wrote:

Since we have an appointment at NIH as well, I would be hearing input on

this from some of you who have been to NIH. Nicki told me we would need

to have Jarrod at The Children's Inn by March 13 since his appointment is

March 14 at 8 AM. I never gave thought to the logistics of it. I guess I

thought the info would be in the packet I was told to expect. But any

tips from those who have been there before would help.

Thanks!

(SWFL)

Mother of Jarrod (3)

On Sat, 4 Feb 2006 07:39:01 -0800 (PST) Sacora Casselman

<sacoracasselman@...> writes:

Thank you Tammy for the information i was wondering if I should call them

or make reservations on the internet. Now does the Inn just take you to

the hospital or does the shuttle take you to the stores and things like

that?I wil have to check everything out about arriving and depart to with

the shuttle. When I was their we spent probably about $275 or something

like that on taxi services that i just crazy. Who is Dr Lewey? Is he at

the NIH? Well thanks for the info.

Sacora mom of Nicolas 12

Redmond OR

Tammy <rlw_124@...> wrote:

Our first visit we waited for someone to call us about all the info.

That did not happen. We called the Inn ourselves and told them our

name and when the appt was. Someone called a couple days later to let

us know we had a room. It is important you get your flight arrival

time and when you will fly out. We found out the shuttle from the

airport to the Inn only runs for certain times. The times are posted

on the Childrens Inn website. Another newbie thing, my husband and

sons flight left at 7:30am. They had to leave the Inn by 6:00 since it

was a 45 minute drive back to the airport. Shuttle did not run til

7:00, I think. $40.00 later for a cab they made it. Just one of the

things we learned. The Inn has a kitchen to make food too.

I am sorry if I ever seemed negative about NIH. I am scared and

protective. We have had so many nightmare doctors prior to our next to

Sainthood doctor we have now. I know that type of doctor is dime a

dozen and I have my guard up. Dr Lewey has been wonderful and has

responded to all of our needs for Clay with the most compasion. It is

more about me than them.

Congrats Sacora & on your appts-good luck.

Tammy, Mother of Clay 4 HIDS