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Old 06-12-2010, 02:29 PM   #1
kctwinmommy
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Somewhat new here, planning our MAW trip!! Oct. 4th-10th, 2010

I was a member here several years ago, when we were planning a family trip in Spring, 2009. However, my DD's health made that trip impossible. My DD has been diagnosed with an extremely rare syndrome called ROHHAD (short of Rapid Onset Obesity with hypothalamic disfunction, hypoventilation, and autonomic disregulation!). She basically has gained massive weight in 2 years, without any real way to control it. Even on a restricted diet of about 1000-1200 calories/day, she continued to gain weight. Only in the past few months have we even gotten her to just maintain it a little bit. The bigger issue is that her brain "forgets" to breath. She can look completely normal, and not be breathing. And you won't know anything is wrong until she falls over not breathing. She doesn't know when her body is in distress either, so she has a tracheotomy and is on a ventilator 24/7. She spent 96 days in the hospital this past fall, plus several other 1 week hospital stays in the past year as well. She only got to go back to kindergarten in the last few weeks. She had attended the first 4 days before being hospitalized.

Anyway, with all of this going on, she hasn't had much time to be a normal kid. She's more of an adult than an actual kid. She struggles in social relationships with kids, not really able to interact with them well. She also latches onto adults. It's been a struggle in a lot of ways. So... I figured I would finally get this pre-trip report started, so maybe I can start getting something good going on!! LOL!

As for the specifics...

* Who is in your party ~ It will be the 4 of us, plus my parents are joining us on the trip. MAW doesn't pay for them, although they can stay at GKTW with us. Plus we're getting at least 1 night nurse, possible a day one too (if we can find one we like)

* Your travel dates ~ October 3rd - 9th

* Where are you staying ~ Give Kids the World

* What Advanced Dining Reservations you have made (if any) ~ Nothing

* If you have a set itinerary ~ Nothing yet. I know we'd like to go to Sea World and Animal Kingdom. My DD LOVES animals, she wants to be a vet when she grows up.

* Any special plans, events, etc that you have planned ~ I think we'd like to try a short fishing trip. Plus, the usual fireworks shows, parades, etc... I've only been one time, and that was 11 years ago, without kids. So I'm having to learn a lot again!

Anyway... if you have any advice or ideas, I'd greatly appreciate it! And if this is all in the wrong forum, I'm sorry!
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Pre-trip report http://www.disboards.com/showthread.php?t=2486678

Last edited by kctwinmommy; 09-14-2010 at 12:24 PM. Reason: Added dates to title!
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Old 06-12-2010, 07:01 PM   #2
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Welcome Cindy!!

You will be going about a month before our trip (November 14th thru 20th) So I will be anxious to read about your trip! You guys should try to do the Mickey's Halloween Party if you can it sounds really fun! We are going to go to the Mickey's Very Merry Christmas Party during our trip!

I would get making a few ADR's if possible!!
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PTR- http://www.disboards.com/showthread.php?t=2450895

TR- Hayley's Magical Make A Wish Trip-
http://www.disboards.com/showthread....7#post39032507
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Old 06-12-2010, 11:11 PM   #3
xanphylus
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Like the PP said: Welcome!!! And you should def do the Not So Scary Halloween party!! I have pic in my TR- it rocks. And you may be able to get the tickets through MAW- ask.
It would be like an extra ticket if you went say, go fishing or something that morning and you wouldn't have to waste one of your 3 days of park tickets then. And you can get in at 4 pm for the party still. Did I even make sense there? lol
Anywho! Welcome aboard and hope to see more posts!
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Old 06-13-2010, 04:46 PM   #4
kctwinmommy
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Thanks! I think we will look at the MNSSHP party! I've heard great things about it!
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Pre-trip report http://www.disboards.com/showthread.php?t=2486678
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Old 06-13-2010, 06:15 PM   #5
cantwaittoseemickey
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Welcome!! I think I know you from another forum I am following along! Have lots of fun planning your trip. I hope you find a great day nurse I am sure that will help alot! Good to hear your parents will be joining you all.
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Old 06-13-2010, 06:27 PM   #6
kctwinmommy
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Quote:
Originally Posted by cantwaittoseemickey View Post
Welcome!! I think I know you from another forum
Which one?! Trach board or P2P?! At least those are the two I'm guessing! LOL!
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Pre-trip report http://www.disboards.com/showthread.php?t=2486678
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Old 06-13-2010, 06:46 PM   #7
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Quote:
Originally Posted by kctwinmommy View Post
which one?! Trach board or p2p?! At least those are the two i'm guessing! Lol!
p2p
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Old 06-13-2010, 07:19 PM   #8
kctwinmommy
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Quote:
Originally Posted by cantwaittoseemickey View Post
p2p
LOL!! I thought so after reading your PTR!
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Pre-trip report http://www.disboards.com/showthread.php?t=2486678
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Old 06-13-2010, 08:31 PM   #9
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Hi there, I am subbing too.........It is Alison from p2p!
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Old 06-16-2010, 06:51 PM   #10
kctwinmommy
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Maybe someone can answer this, how did you handle nursing for a MAW trip? It's going to be the 4 of us, plus my parents, and then 2 nurses (1 for the day and 1 for night). So that's 8 people! Can GKTW accommodate that many people in 1 unit??

And let me know if I should be asking these questions in another forum! Thanks!
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Pre-trip report http://www.disboards.com/showthread.php?t=2486678
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Old 06-17-2010, 07:48 AM   #11
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Quote:
Originally Posted by kctwinmommy View Post
Maybe someone can answer this, how did you handle nursing for a MAW trip? It's going to be the 4 of us, plus my parents, and then 2 nurses (1 for the day and 1 for night). So that's 8 people! Can GKTW accommodate that many people in 1 unit??

And let me know if I should be asking these questions in another forum! Thanks!
The max in a unit at GKTW is 7.

I was the nurse for Lauren - so I may have a perspective on this.

I think I would get a hotel room for the nurses - they could share, I would think, since they won't really be crossing paths much. The day one can sleep there at night and the night one will probably sleep some during the day.

I am a close family friend of Lauren's and we didn't stay at GKTW - but the big thing for me was trying to balance giving space to the family to be able to do what they wanted to do and being around so that Lauren could do what she wanted to do. I basically tried to handle everything that Lauren needed so that her Mom could have a nice vacation, too.

I do think GKTW would provide meals for the nurses - they may charge you a dollar or something?

If you are interested, I can do some research for you on hotel rooms in the area. Since you are about 20 min outside of Disney, it would probably be fairly easy to get a hotel room that won't totally break the bank.

That would also give the nurse some emotional space from caregiving, which is vital to everyone enjoying their trip. Doing anything 24/7 is very, very hard - as you know well.


If you don't get answers to any question about your trip - feel free to PM me - I don't always catch each post. You could also post them on the Wish Trippers Thread, too - since it gets bumped more often, it may be easier to see the question.

Hope this helps.

I would be glad to help you find an inexpensive, but adequate, hotel room for the nurses.

Just thought of some more questions: Have you talked to MAW about needing the nurses? Are they "official" on your trip? Because I think the expensive thing with taking them is going to be the tickets - one day tickets are really, really expensive. I assume they are going to be in the parks with you guys?

One option would be only taking one nurse and have them be responsible for helping while you guys are at the Village - bathing, dressing, feeding, loading the vehicle, etc, etc - but then just leave them there to enjoy some quiet time while you guys are at the parks. That would give you some much needed help, but would not be so costly.
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Old 06-18-2010, 03:03 PM   #12
kctwinmommy
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Quote:
Originally Posted by maroo View Post
The max in a unit at GKTW is 7.

I was the nurse for Lauren - so I may have a perspective on this.

I think I would get a hotel room for the nurses - they could share, I would think, since they won't really be crossing paths much. The day one can sleep there at night and the night one will probably sleep some during the day.

I am a close family friend of Lauren's and we didn't stay at GKTW - but the big thing for me was trying to balance giving space to the family to be able to do what they wanted to do and being around so that Lauren could do what she wanted to do. I basically tried to handle everything that Lauren needed so that her Mom could have a nice vacation, too.

I do think GKTW would provide meals for the nurses - they may charge you a dollar or something?

If you are interested, I can do some research for you on hotel rooms in the area. Since you are about 20 min outside of Disney, it would probably be fairly easy to get a hotel room that won't totally break the bank.

That would also give the nurse some emotional space from caregiving, which is vital to everyone enjoying their trip. Doing anything 24/7 is very, very hard - as you know well.


If you don't get answers to any question about your trip - feel free to PM me - I don't always catch each post. You could also post them on the Wish Trippers Thread, too - since it gets bumped more often, it may be easier to see the question.

Hope this helps.

I would be glad to help you find an inexpensive, but adequate, hotel room for the nurses.

Just thought of some more questions: Have you talked to MAW about needing the nurses? Are they "official" on your trip? Because I think the expensive thing with taking them is going to be the tickets - one day tickets are really, really expensive. I assume they are going to be in the parks with you guys?

One option would be only taking one nurse and have them be responsible for helping while you guys are at the Village - bathing, dressing, feeding, loading the vehicle, etc, etc - but then just leave them there to enjoy some quiet time while you guys are at the parks. That would give you some much needed help, but would not be so costly.
Thanks for all the info! I never thought about them not going to the park with us. Although I think that MAW covers all that for them too. We're trying to bring 2 nurses, so that we can have 1 day & 1 night. So only 1 of them would be with us during the day. And in fact, if we only had 1 nurse that we wanted to bring, we'd have her be our night nurse and just do our own thing during the day. So that may be a possibility as well.

I do like the idea of having them get a hotel room near by. I'll get more info from you about that if we go that route. Thanks!
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Pre-trip report http://www.disboards.com/showthread.php?t=2486678
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Old 06-22-2010, 08:36 AM   #13
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I'm so excited - we finally got 2 nurses to go with us!! We've had such a nightmare with nursing, I wasn't sure if we'd have any to go with us. But it looks like we've got 2 that we like who can go!!
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Pre-trip report http://www.disboards.com/showthread.php?t=2486678
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Old 06-22-2010, 02:03 PM   #14
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Great news! I am very happy for you!
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Old 06-24-2010, 11:40 AM   #15
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I am so glad your nursing is working out. Sounds like you are in full planning mode
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