Somewhat new here, planning our MAW trip!! Oct. 4th-10th, 2010

[kctwinmommy]

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!

 

[rcq925]

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!!

 

[xanphylus]

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!

 

[kctwinmommy]

Thanks! I think we will look at the MNSSHP party! I've heard great things about it!

 

[cantwaittoseemickey]

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.

 

[kctwinmommy]

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!

 

[cantwaittoseemickey]

which one?! Trach board or p2p?! At least those are the two i'm guessing! Lol!

p2p

 

[kctwinmommy]

p2p

LOL!! I thought so after reading your PTR!

 

[visitingapril09]

Hi there, I am subbing too.........It is Alison from p2p!

 

[kctwinmommy]

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!

 

[maroo]

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.

 

[kctwinmommy]

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!

 

[kctwinmommy]

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!!

 

[xanphylus]

Great news! I am very happy for you!

 

[cantwaittoseemickey]

I am so glad your nursing is working out. Sounds like you are in full planning mode

 

[kctwinmommy]

Yeah!! Talked to our MAW coordinator today. The nurses will get their own rental car, plus a hotel room at the Holiday Inn right near there! So at least that will be taken care of. They'll get their own place to relax and be away from us when they're not working. Plus, each nurse will get a debit card with some money to cover some of the extras (like gas, baggage fees, stuff like that). She said it won't be a ton, but something to help. And they cover their salary, plus any overtime that comes up.

Then, our family will also get a debit card to use for the same things, plus souvenirs and such. My parents will be able to stay in the villa with us and they'll get to eat food there without cost. They'll have to pay for their park tickets, airline tickets, and that kind of stuff. They will get us a minivan for our rental too, since there's 4 of us, plus 2 nurses, but they technically aren't counting my parents. But since the nurses will get their own car, we should be OK.

Oh, and they also will have a jogging stroller there for us to use! We use it for our DD's medical equipment. She has one of those metal luggage carts (looks like a hand cart), that we strapped the vent to, so she pulls that around behind her. But we put all the other stuff in the stroller. So I was asking about needing to bring that, and she said not the stroller, they can have one for us!

I also got 4 ADR's made for now. As my friend told me, it's not a problem to make a bunch and cancel whatever we don't need. So I've got breakfast at Tusker House, a lunch at Crystal Palace, a dinner at Chef Mickey's, and a dinner at 1900 Park Fare. Nothing says we'll do all of them. And we'd like to go to the MNSSHP too. It's happening the night we get there, so we'll skip that. But it's also going on that Thursday & Friday, so we'll do one of those, not sure which would be better, although I'm thinking Thursday won't be as crowded as a Friday night.

I think that's it for now... Getting a little more excited now that plans are starting to formulate!!

 

[cantwaittoseemickey]

Wow that is amazing at everything they are doing for your nurses.

 

[maroo]

Wow! That is amazing!

Go MAW!!!

 

[kctwinmommy]

Wow that is amazing at everything they are doing for your nurses.

I know!! It makes things a heck of a lot easier!!! Now we're getting really excited!!

 

[kctwinmommy]

Oh, and we've changed the dates, so I need to change my ticker! LOL! They had a harder time finding good flights going on Sunday coming back on Saturday. So instead we're leaving Monday and coming home on Sunday!