Disney World Trip

[Guest guest]

There is an organization in Orlando called Give Kids the World that might be

able to help. If you type in Give Kids the World in your search engine it

should be able to find it.

Tina Mom to Christian 12 yowcf

[Guest guest]

In a message dated 1/12/2004 1:41:20 PM Eastern Standard Time,

kathkrish@... writes:

> Here's a GREAT tip that we used - bring a note from your doctor

>

You bring the note from THE DOCTOR w/ details about CF, lines being dangerous

due to HEAT. to Courtesy Hut/Cabin, whatever and THEY give you letter (I

think) to show the Ride People...

[Guest guest]

Hi everyone! We're planning a trip to Disney World in May & I'm

wondering about the acoomodations for CF kids. We're planning on

staying at an in-park resort. What about meds that require

refrigeration? How do they accomodate that? What about air-travel

with the vest? Also, does Disney offer any perks or discounts for CF

kids? I'd appreciate any tips that anyone has to offer!

Thanks,

in AR, mom of Emma, 6wcf & on 3nocf

[Guest guest]

Which vest do you have?

The big vest has to go in the cargo area. There is a suitcase to

carry it, Randy can probably help with that. Most resorts at

disney have a ref-bar, what I do is I take out a few drinks and put

the pulmozyme pouch in there, sometimes it will fit on top of the

drinks, just take as many ampules as you will need with you. I have

not had any problems at the hotels when I do this, on the contrary

they are very happy to help.

About free tickets or discounts, you can probably contact the Disney

people in Orlando and see. When we went after diagnosis it did not

occur to me but it is a good idea, you should explore it.

I hope this helps,

> Hi everyone! We're planning a trip to Disney World in May & I'm

> wondering about the acoomodations for CF kids. We're planning on

> staying at an in-park resort. What about meds that require

> refrigeration? How do they accomodate that? What about air-

travel

> with the vest? Also, does Disney offer any perks or discounts for

CF

> kids? I'd appreciate any tips that anyone has to offer!

>

> Thanks,

> in AR, mom of Emma, 6wcf & on 3nocf

[Guest guest]

Here's a GREAT tip that we used - bring a note from your doctor

defining SPECIFIC disabilities due to CF - e.g. standing in long lines

in the hot son will dehydrate and be dangerous - long lines prevent

access to a bathroom - etc. Our doctor did it - you present it at City

Hall inside Disney and they give you a pass - you don't wait in ANY

lines- you go through the handicapped entrances and you are the first

on EVERY ride. What a difference it made in our trip!

Have fun!

Krishnan

Mom to Santosh, 6wcf and Leela, 4wocf

On Monday, January 12, 2004, at 11:48 AM, juliewilkins2001 wrote:

> Hi everyone! We're planning a trip to Disney World in May & I'm

> wondering about the acoomodations for CF kids. We're planning on

> staying at an in-park resort. What about meds that require

> refrigeration? How do they accomodate that? What about air-travel

> with the vest? Also, does Disney offer any perks or discounts for CF

> kids? I'd appreciate any tips that anyone has to offer!

>

> Thanks,

> in AR, mom of Emma, 6wcf & on 3nocf

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Dear ,

I am here in Orlando.

3 in my family work at Disney, others have in past years also.

They have changed most of their policies in past few years. They don't

have a blanket policy for folks with CF . They figure they give it all

free for those with the many wish foundations. BUT.at the ticket windows

they do have a discount for " handicapped " What would be even better is

to ask the HOTEL where you are registered the best pricing you can get

for passes. Explain your child has CF & you didn't get to put in for

wish.Ask the manager of hotel or guest services. Others will not have

the authority to do ANYTHING about the attraction tickets.

All-most all ( I don't know of any that done & believe me I have been

or know folks who have to a great many of them over the last 25 years))-

the hotels & motels have refri in rooms.Just also mention that to them

on the same call about the discount tickets . Well worth the call--

I used to have folks who worked there who volunteered to walk folks in

" But " Disney stopped that about 4 years ago & told them if they did &

they weren't family , they would loose their passes.

One of my granddaughters is Cinderella & Poppins & Ariel from time

to time .They change her around different days.She also goes to college

alternative days too.I was trying to see if she had any of her hand out

passes(not ones she has to walk in with guests left & she doesn't .)

SORRY

I am sure they can get you some better pricing thru your hotel -they try

to be helpful , so call today.

If you need anything while here or can get by..my number here is

1- (toll free).i am right downtown on east Colonial Dr.(rt

50 ) Just off the I-4 that comes in directly from Disney area, 633 E.

Colonial Dr. Orlando, FL 32802.. Many folks stop by & I always look

forward to that. .Whatever you need, call. If I don't have, I may be

able to help you get.

This is for anyone who comes here at any time. Our NemoursCF Clinic is

truly great. The ARNOLD PALMER CHILDREN'S HOSPITAL is super.....only get

taken there.They know about CF & can call the CF doc in ER -or I can .

They are also personal friends of mine. One even has a son who has CF.

:)

Have a great time.

LOVE & HUGS,

grandmomBEV

Disney World Trip

Hi everyone! We're planning a trip to Disney World in May & I'm

wondering about the acoomodations for CF kids. We're planning on

staying at an in-park resort. What about meds that require

refrigeration? How do they accomodate that? What about air-travel

with the vest? Also, does Disney offer any perks or discounts for CF

kids? I'd appreciate any tips that anyone has to offer!

Thanks,

in AR, mom of Emma, 6wcf & on 3nocf

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

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

[Guest guest]

This group only houses folks thru Wishes.

They might be able to suggest some ideas for passes tho

L & H, GRDMBEV

Re: Disney World Trip

There is an organization in Orlando called Give Kids the World that

might be

able to help. If you type in Give Kids the World in your search engine

it

should be able to find it.

Tina Mom to Christian 12 yowcf

[Guest guest]

Cool, thanks!

>

> > Hi everyone! We're planning a trip to Disney World in May & I'm

> > wondering about the acoomodations for CF kids. We're planning on

> > staying at an in-park resort. What about meds that require

> > refrigeration? How do they accomodate that? What about air-

travel

> > with the vest? Also, does Disney offer any perks or discounts

for CF

> > kids? I'd appreciate any tips that anyone has to offer!

> >

> > Thanks,

> > in AR, mom of Emma, 6wcf & on 3nocf

> >

> >

> >

> > -------------------------------------------

> > The opinions and information exchanged on this list should IN NO

WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS

OR

> > TREATMENTS.

> >

> > ------------------------------------

> >

> >

> >

[Guest guest]

Kids with disabilities get lots of perks at Disney. They get to skip lines and

stuff. When we went a few years ago in January, we didn't really need to do

that though, because the park was pretty quiet at that time. DO ask for a

fridge in your room ahead of time for the meds and anything else that is a must.

We stayed at the Wilderness lodge and it was a blast. Everyone there did all

they could to accommodate us.

For the travel get notes for the meds and nebs from the doc. We did have to

show them at the airport in order to carry on the neb and the meds. I also had

to take the neb out to show airport security that it wasn't a bomb, so the note

came in handy! We traveled Jan '02 on the first day of major airport regulation

changes!

Find out the nearest CF center to Disney-the hospital they tell you to use

doesn't have one.

Have fun!!!!!

Mom of 5 with CF and one on the way

Disney World Trip

Hi everyone! We're planning a trip to Disney World in May & I'm

wondering about the acoomodations for CF kids. We're planning on

staying at an in-park resort. What about meds that require

refrigeration? How do they accomodate that? What about air-travel

with the vest? Also, does Disney offer any perks or discounts for CF

kids? I'd appreciate any tips that anyone has to offer!

Thanks,

in AR, mom of Emma, 6wcf & on 3nocf

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Some of the hotels do NOT have a refrigerator in all rooms though so make sure

that you ask about it. Wilderness lodge, for one, does not have them in all of

the rooms but they will get you one if you ask ahead

Disney World Trip

Hi everyone! We're planning a trip to Disney World in May & I'm

wondering about the acoomodations for CF kids. We're planning on

staying at an in-park resort. What about meds that require

refrigeration? How do they accomodate that? What about air-travel

with the vest? Also, does Disney offer any perks or discounts for CF

kids? I'd appreciate any tips that anyone has to offer!

Thanks,

in AR, mom of Emma, 6wcf & on 3nocf

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

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

[Guest guest]

Dear , That is what I had said, That most all have refri , But

suggested she still mention to hotel prior to going -Actually, they can

even ask there at check-in, during general times. Right now the hotels are

so full .many are totally full. There are 62,000 folks here just for one

sports convention & there are many more conventions plus the normal

tourists. I just wanted her to be sure & get one. I just think its always

good to check ahead regardless, just as you said...

I go out & meet many folks(CF families generally), & have over the last 18

years, & the hotels try very hard to accommodate folks.

I used to be one of those that met the Wish children , back before we even

had Give Kids the World. It was just a dream of Land at that time. Now

that is a super wonderful place.

If you ever plan to be here again, I would love to meet you. Your so very

helpful to all on the list. That's why the list is so very important to so

many. Thanks for all you do..

LOVE & HUGS, GrandmomBEV

Re: Disney World Trip

Some of the hotels do NOT have a refrigerator in all rooms though so make

sure that you ask about it. Wilderness lodge, for one, does not have them

in all of the rooms but they will get you one if you ask ahead

Disney World Trip

Hi everyone! We're planning a trip to Disney World in May & I'm

wondering about the acoomodations for CF kids. We're planning on

staying at an in-park resort. What about meds that require

refrigeration? How do they accomodate that? What about air-travel

with the vest? Also, does Disney offer any perks or discounts for CF

kids? I'd appreciate any tips that anyone has to offer!

Thanks,

in AR, mom of Emma, 6wcf & on 3nocf

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

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

[Guest guest]

Oh Bev,

I know that you had said that most have the fridges I just wanted to re-iterate

that she should ask. When we went to Disney, the travel agent who made all of

the arrangements was supposed to request one for us and she forgot. So we got

to the room with a small cooler full of water and meds and had no fridge. I

just didn't want it to happen to her if she needed one The people there are

most helpful and they did get us a fridge within an hour or so, so it was ok in

the end.

Our biggest problem was that 's g-tube balloon had popped at the airport

in Philly and the emergency g-tube set was checked. Add to that the fact that I

had never changed the thing before and had to do it by myself in the hotel once

we got there..........Well, I was a bit stressed that first day.

JULIE,

If your daughter has a g-tube bring an extra one with you and carry it on!

Don't check it like stupid me!

Disney World Trip

Hi everyone! We're planning a trip to Disney World in May & I'm

wondering about the acoomodations for CF kids. We're planning on

staying at an in-park resort. What about meds that require

refrigeration? How do they accomodate that? What about air-travel

with the vest? Also, does Disney offer any perks or discounts for CF

kids? I'd appreciate any tips that anyone has to offer!

Thanks,

in AR, mom of Emma, 6wcf & on 3nocf

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

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

[Guest guest]

Dear ,

Bless your heart..I bet that was a really mad experience to have happen at

that time. In fact , anything that would have put a ting on your trip would

have been not good. I see those wee ones come & it breaks my heart to not be

able to " fix & make all better " . The cancer kids as well. there are so many

.. It is very hard to realize there is so much of that in our country too.

They are so very appreciative with all........

My granddaughter Carly, also works at the Give Kids the Worlds with her

BETA group. It is such a wonderful place. We have toy drives each year to

get new ones , so they can give them to the kids if they want them--Kids get

attached to certain ones -hehe...Carly also works on the " feeding serving

lines as well. I used to do that , but I cant be relied on for certain

scheduled times, as I travel so much for work, anymore.

It was a great feeling to help them tho.Sooooooooo, I do the other behind

the scenes things that I can.

Oh, don't refer any of the CF folks to Celebration Hospital -Most staff

usually do out at the attractions(its close) BUT, they have No CF training,

as I said in my other post .They can always call me for help /directions,

meds/equipment/ whatever they forget -loose...... I will be there or at

least tell them where /who .they need. That is why I give out my number

always 1- just in case.

Send them the Arnold Palmers Women's & CHILDREN's Hospital as it is where

all the CF folks go-The CF Center is the NEMOURS CF CENTER.(it is just

across the street). It is a true VERY good Center, especially for

travelers.Dr Geller is Nationally known for his expertise in inhalers , etc.

Does many of the studies on all of them ......

Dr Mark Weatherly is so involved , he adopted Josh(wcf), who is now 12 & he

is a single dad. :) Great doc. Many on list know him from Atlanta ( helped

in setting up the great ADULT center there with Dr Caplan & really they used

to do all the peds AND the adults for years., oh , & also Tampa centers. he

hails from Wisconsin though :)..

There are other doctors there , These two are soooo special .Tell them

Auntie Bev or GrandmomBEV,sent you -That is what some docs call me. Mark &

call me Auntie--Mark started that .hehe......

I have had folks that were really upset from the ER at Celebration. They

are very nice & it is pretty (its Disney , BUT , as we know the difference

when CF knowledge is needed, especially in ER..ANYWAY.......

Thank you sooo much for your " willing helper " ALWAYS!! I love your posts &

learn from you daily.

PLEASE, if you are ever here again, stop in , call , let me take you to

lunch /dinner .I love meeting with the

folks. I do it quite often. If they have time..Sometimes they just drop

by --- Putting a face with all the post is

such fun. ---Thanks again

Have a super day.

LOVE & HUGS,

GrandmomBEV

Re: Disney World Trip

Oh Bev,

I know that you had said that most have the fridges I just wanted to

re-iterate that she should ask. When we went to Disney, the travel agent

who made all of the arrangements was supposed to request one for us and she

forgot. So we got to the room with a small cooler full of water and meds

and had no fridge. I just didn't want it to happen to her if she needed one

The people there are most helpful and they did get us a fridge within an

hour or so, so it was ok in the end.

Our biggest problem was that 's g-tube balloon had popped at the

airport in Philly and the emergency g-tube set was checked. Add to that the

fact that I had never changed the thing before and had to do it by myself in

the hotel once we got there..........Well, I was a bit stressed that first

day.

JULIE,

If your daughter has a g-tube bring an extra one with you and carry it on!

Don't check it like stupid me!

Disney World Trip

Hi everyone! We're planning a trip to Disney World in May & I'm

wondering about the acoomodations for CF kids. We're planning on

staying at an in-park resort. What about meds that require

refrigeration? How do they accomodate that? What about air-travel

with the vest? Also, does Disney offer any perks or discounts for CF

kids? I'd appreciate any tips that anyone has to offer!

Thanks,

in AR, mom of Emma, 6wcf & on 3nocf

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

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