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Old 12-11-2009, 04:22 PM   #3571
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Quote:
Originally Posted by momma_mouse View Post
Anything and everything I might need to know about GKTW, Disney, Universal or Sea World.

At first I put a laughing smilie here.... There are volumes written about the subject....To write it ALL here.... You totally made me smile.

I am leaving Monday for a trip with my disabled friend and her family...normally I would not have been invited on their family vacation.... but...

It started several months ago when they were planning....they wanted me to "tell" them everything they need to know for their trip.... about an hour later they were begging me to stop and inviting me to come!

I would start on the 2nd post of this thread...

There is a link there to a thread on the disABILITIES section of the boards...where you can find a BUNCH more information.

Information like crazy!!! Probably WAY more than you need to know.


Frankly...you need to know just a few really important things...

1. Only you know your family and what they would like, what schedule they can keep, etc...

2. Take it easy on your trip so you don't get sick there or after you get back.

You will have a great time!


What are the do not miss things at GKTW?

Depends on the age of your kids and when you go...but generally I say the Christmas Party is a don't miss. I also - for young children - think the Candyland Party is a don't miss...and the birthday party.

Make sure you eat breakfast in the Gingerbread house at least one time - it is yummy! And try out Katie's Kitchen (Boston Market food)...

and OF COURSE...Ice cream. Every day.




I read something about a free meal at Hard Rock???

I can't remember who reported this?? Or what they said? Seems like it was half off of merchandise? I don't know of any free meals except at GKTW. But they do offer some deep discounts on some things.

Do you get front of the line at Universal?

Yes. - in fact, many have reported that they actually do a even "better" job of granting VIP access to rides there.

Anything you can think of would be great. I'm kind of stressing knowing that a.) I'm taking 3 kids 6 and under, 2 who have special needs. We're going to be out numbered!! b.) I can't plan this trip out the way I would like. We're going to be flying by the seat of our pants.
Don't be too stressed. Just set your expectations reasonably...you probably won't be showing up at rope drop with your three kids and go all day with no rest. It will take longer to get around...and all of that is totally fine.


I would read some of the TR's on post 1 - they will give you a good idea of what you may expect...

Focus on the ones that say MAW/GKTW - so that you get ones that will be similar to yours (as opposed to Disneyland or a Cruise or someone that stayed onsite at Disney).

Each trip has a special moment...a moment that was not planned...a special character greeting or a cast member does something over the top nice...or at GKTW....EVERY trip has that moment. But none have the SAME moment...

I have not seen a magical moment repeated yet...different characters, different kids, different families and trips - but they have all come back and said it was wonderful! And was over before they knew it!
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Old 12-11-2009, 04:31 PM   #3572
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Ok...

I am copying this in several places...so if you follow my pretrip reports and such...you may see this more than once...

We leave MONDAY to go to Disney.

I am going with my friend Rachel (not to be confused with Lauren, who is pictured below) as her nurse and to help "guide" them in Disney.

Rachel's condition is terminal and we almost lost her in July/Aug of this year - after an ICU stay...she finally has gotten a LOT better in the past few months.

But within the last few days she is having all sorts of issues with seizures, confusion and she is now sick - 101F fever and a lung infection. It is not pneumonia. Her doctor was talked into letting her go - and gave us a list of instructions - including staying in the room if she is sick.

I am asking you guys to please pray for her - that she would feel better and feel GOOD for this trip!

Also that the weather would hold out for us...specifically that it would not be so cold. Right now some forecasts are saying that it may be as low as 41F at night...which is cold to these people from MS!

I would appreciate you guys praying for the trip!
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Old 12-11-2009, 04:38 PM   #3573
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Prayers are on the way Maroo! May this family have a dream trip and make wonderful magical memories to hold in their hearts forever.
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Old 12-11-2009, 04:59 PM   #3574
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Thank you, Linda!!



I HAVE to add this picture...
She is hanging in her hoyer lift with a towel on her head...looking pitifully sick. She thought the picture was so funny she posted it on her Facebook page! She cracks me up.



So...pray with us....that we will have some HAPPY ... DISNEY ... pictures to post next week!
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Old 12-11-2009, 05:04 PM   #3575
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Can you tell me more about the parties? The Christmas party is pretty self explanatory but what is this Candy Land party?

No, definately no rope drops to closing for us. I'm planning on cutting out lots of things that I don't think they will absouletely love because there is no way my 2 year old will handle that. She is the child who asks to take a nap and asks to go to bed, some nights at 6 or 6:30.

I'm still debating US. I'm thinking we could do it in a day, instead of 2. What do you think? We would only do some character meets, maybe 1 playplace and some of the kids rides.

We can't do a lot of rides since our youngest is only 36 inches. As of now, Sloan, the wish kid, is only 39. I'm crossing my fingers he grows just a wee bit between now and then. We don't want to split up much. I've promised our oldest a few rides of her choices so we will use parent swap some, but not much....it just doesn't feel very fare to me to do that to the little ones.
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Old 12-11-2009, 06:09 PM   #3576
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Prayers for Rachel and the weather getting better. I really hope she has the greatest trip ever and gets lots of happy disney pics.
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Old 12-11-2009, 08:02 PM   #3577
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Quote:
Originally Posted by kellyw8863 View Post
Thanks, Maroo! We're positively thrilled for her to have something to look forward to, though I know she's a little young to understand the whole scope of things.

For those of you with multiple children, how do you address the needs of the non-wish child? As soon as I got off the phone with MAW and relayed the news to my husband, my other daughter wanted to know when she was going to get her wish. We've never really talked to Maya about Ali's mitochondrial disease, though she certainly knows something is up. And to be honest, I'm not sure I'm ready to address it just yet because we certainly don't treat Ali like she is "sick." And for the most part, her health is stable right now so I don't want to go there in my mind, either. So thoughts on how to address it? Thanks so much!

Kelly

Hello! I'm not on the boards every day, and just saw your question. Our son Mark had his Wish Trip to WDW/GKTW in November 2008. Mark is a twin, and we were very concerned about his twin brother's reaction to all this. I understand that your situation is different because everything has not been explained. In our case. Douglas has always known of his brother's disability. Still, as Mark is cognitively, socially and verbally typical for age, Douglas sometimes has a hard time understanding why people make a fuss about Mark.

We were very concerned about Douglas' reaction. Our wish granting organization, Starlight Starbright of Canada, was so inclusive from the very start - Douglas also received lovely gifts when we first met out Wish Granter, and also when she came with the Wish Trip tickets etc package...it was a HUGE box filled with gifts for the boys...and tickets etc.!

We did try to think of something that would make Douglas feel special and it worked. Unfortunately, I also know that WDW has stopped doing this, so I'll try to think of another idea as well. We had a meal at the Coral Reef at Epcot, where you can eat right beside a HUGE fish tank. There are divers who have work to do etc in the water, but they also used to "deliver" special messages to the folks at the tables right by the glass. I was able to arrange a special sign that said "Welcome to the Coral Reef, Douglas Bowen and Family. Best Wishes to a Wonderful Brother and Son." They also did personalized menus for us - had a picture of the boys, and same message. It worked like magic! I did tell Mark about it ahead of time (they were 10 at the time, so he was able to understand) and he appreciated that this was a special time for Douglas.

So...I just wish I could suggest this to you, too...but I have read that they don't do this anymore. I suspect they were inundated with requests. Do you have any special meals planned? Perhaps you could arrange a special dessert with a special message?

Another thought is to try to be clear about what you other child would really, really like to do at WDW and make sure it happens. This story comes from after our time at GKTW, when we extended our stay. Our weather was a little iffy and we hadn't had any swim time. Douglas wanted to go back to the hotel and swim; Mark wanted to stay at the MK. For sure, my hubby took Douglas back and Mark and I stayed on. That was the day we visited the Wish Lounge and met a CM who was a triplet...and had the same bday sa my guys! She arranged a gift of Mickey ears for the boys. If there is anything your other child would love to do but your Wish Child doesn't care for, so your best to do it.

Those are my initial thoughts, and if I think of anything else, I'll let you know!

Alison
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November 2008: http://www.disboards.com/showthread.php?t=1883215
With a brief report on Mark's wonderful Wish Trip!
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Old 12-11-2009, 10:07 PM   #3578
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prayers for Rachel
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Old 12-11-2009, 10:13 PM   #3579
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Quote:
Originally Posted by maroo View Post
Thank you, Linda!!



I HAVE to add this picture...
She is hanging in her hoyer lift with a towel on her head...looking pitifully sick. She thought the picture was so funny she posted it on her Facebook page! She cracks me up.



So...pray with us....that we will have some HAPPY ... DISNEY ... pictures to post next week!
That's a funny pic! I have oft complained that Phoebe is not much "work" it's all of her contraptions and equipment! Sending happy thoughts to FL, hoping for good weather and good health!
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Old 12-11-2009, 10:28 PM   #3580
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Quote:
Originally Posted by pnutallergymom View Post
Good Afternoon Everyone,

My DD3 was just granted her MAW and she has wished to go to DisneyWorld.


Congrats!!

I am an uber planner and live on the computer when I am not taking care of DD!! I think that is why I am freaking out about this trip already!!!

I was really freaking out at first too! I hated not having dates so I could start planning!

Sooooo, I have alot of questions!!!!

I know that there is typically an expense check that MAW gives you. Could some of you PM me and let me know what I can probably expect? I am just trying to figure out how to make this all work. Luckily, we have a friend who works for Disney and might be able to get us some more park passes, but I am not sure how many.


I don't really want to know ahead of time. I'm planning the dining reservations that we want assuming we will pay for it one way or another. I haven't decided whether or not to add on any other extras like BBB (since GKTW has something similar now) or the pirate makeover. It might just depend on the kids that day.
Since my kids are younger also, I have decided that we will do US/IOA and SW just because we can. We will only hit the little kid areas and rides, and not worry about doing any big rides unless the mood hits when we are there and time and moods allow for it. Phoebe's vision is very poor for long distances, so the SW shows will probably bore her to tears, literally. We will visit/touch/feed all the animals we can, and maybe eat at the underwater restaurant. I figure that those nights we will be done early, and can use the extra time to play and explore at Universal Citywalk, DTD or GKTW. Just go with the flow and not feel pressured to hurry. As for the 3-day passes for WDW we are going to hit MK first to make sure we hit all the faves there first. Then divide the days between 2 or even 3 parks, so that we can go back to MK if we want. I'm hoping that our dates will allow for low crowds and plenty of time to do everything we want.

I can see what you mean about the indecisiveness of staying off-site and stressing over those decisions, but I think that GKTW is always a good backup. Unless you have somewhere that you specifically want to go for dinner, just plan on GKTW. I'm not trying to convince you, just pointing out that GKTW is similar to an "onsite" hotel in terms of meals. I guess the travel time is still an issue for you though. I like the idea of having our own vehicle so that we can explore anything we want to (even though we probably won't - we can if we want!). I'm sure whatever they work out for you, you can make it work for your family.
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Old 12-11-2009, 10:42 PM   #3581
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Quote:
Originally Posted by kellyw8863 View Post

That's actually our April vacation and what we would hope for in terms of a departure date! Maya is the same way with Ali. In fact, she likes to "show off" her sister, and is always quick to point out her AFOs and g-tube. She doesn't see it as a big deal at all, most likely because we try to treat it like it's not a big deal. And please, do share - I'm looking forward to it since we are a couple of steps behind you! I hope that you get your dates confirmed soon. I just want everything set so that I know I can truly look forward to it.

That would be fun to cross paths (for me at least, hehe).

So I was talking to Ali this afternoon about "getting her wish," and now she's insistent on going to the zoo. I know why, too, which is pretty funny. Last September, we were supposed to go to the Franklin Park Zoo as part of a Starlight Foundation thing. Because of the weather, it was post-poned to October, and then it was finally just cancelled, again, because of the weather. Ever since then, she has obsessed about it. Now if her wish granters come here and she says she wants to go to the zoo, will they think "bigger" than the Franklin Park Zoo? I'm thinking Animal Kingdom is a zoo, right? I can just picture us spending her wish in Dorchester.

Crying kid - need to go find out what the lastest fight is about!

Kelly
What do you think about showing her some youtube video or google images of Animal Kingdom? Oh!!! And Sea World! Show her all of that, tell her that if you go to the "zoos" in Florida that she can also meet (insert fave character here). Hopefully, you'll be able to nudge her over that direction.
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Old 12-12-2009, 05:41 AM   #3582
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Originally Posted by yinyanggirls View Post
Phoebe's vision is very poor for long distances, so the SW shows will probably bore her to tears, literally. We will visit/touch/feed all the animals we can, and maybe eat at the underwater restaurant.

She might enjoy the "Pet" show at SW - Seating for people with disabilities is right in front of the stage, there's lots of action (It's VERY funny), and you get to 'meet' some of the pets afterwards.
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Old 12-12-2009, 09:43 AM   #3583
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Quote:
Originally Posted by yinyanggirls View Post
What do you think about showing her some youtube video or google images of Animal Kingdom? Oh!!! And Sea World! Show her all of that, tell her that if you go to the "zoos" in Florida that she can also meet (insert fave character here). Hopefully, you'll be able to nudge her over that direction.
I think we have her convinced that there is indeed a zoo at WDW. She's even gotten more specific and will say that her one true wish is "to see a giraffe at a zoo." She cracks me up.

Quote:
Originally Posted by twinmum View Post
Hello! I'm not on the boards every day, and just saw your question. Our son Mark had his Wish Trip to WDW/GKTW in November 2008. Mark is a twin, and we were very concerned about his twin brother's reaction to all this. I understand that your situation is different because everything has not been explained. In our case. Douglas has always known of his brother's disability. Still, as Mark is cognitively, socially and verbally typical for age, Douglas sometimes has a hard time understanding why people make a fuss about Mark.

We were very concerned about Douglas' reaction. Our wish granting organization, Starlight Starbright of Canada, was so inclusive from the very start - Douglas also received lovely gifts when we first met out Wish Granter, and also when she came with the Wish Trip tickets etc package...it was a HUGE box filled with gifts for the boys...and tickets etc.!

We did try to think of something that would make Douglas feel special and it worked. Unfortunately, I also know that WDW has stopped doing this, so I'll try to think of another idea as well. We had a meal at the Coral Reef at Epcot, where you can eat right beside a HUGE fish tank. There are divers who have work to do etc in the water, but they also used to "deliver" special messages to the folks at the tables right by the glass. I was able to arrange a special sign that said "Welcome to the Coral Reef, Douglas Bowen and Family. Best Wishes to a Wonderful Brother and Son." They also did personalized menus for us - had a picture of the boys, and same message. It worked like magic! I did tell Mark about it ahead of time (they were 10 at the time, so he was able to understand) and he appreciated that this was a special time for Douglas.

So...I just wish I could suggest this to you, too...but I have read that they don't do this anymore. I suspect they were inundated with requests. Do you have any special meals planned? Perhaps you could arrange a special dessert with a special message?

Another thought is to try to be clear about what you other child would really, really like to do at WDW and make sure it happens. This story comes from after our time at GKTW, when we extended our stay. Our weather was a little iffy and we hadn't had any swim time. Douglas wanted to go back to the hotel and swim; Mark wanted to stay at the MK. For sure, my hubby took Douglas back and Mark and I stayed on. That was the day we visited the Wish Lounge and met a CM who was a triplet...and had the same bday sa my guys! She arranged a gift of Mickey ears for the boys. If there is anything your other child would love to do but your Wish Child doesn't care for, so your best to do it.

Those are my initial thoughts, and if I think of anything else, I'll let you know!

Alison
Alison, thank you for sharing your experience and ideas! I think once we have dates confirmed that we will schedule some kind of princess meal because that's really where it's at for Maya - she is all about the princesses. It does help that she really wants to go to Disney period. So assuming that we will end up at the zoo at Disney, in a way, Maya will also be getting what she wants. I think it's just the language of the whole thing that's irking her, so we need to be careful there. I know it's Ali's wish, but really, we are looking at this as a family affair because all three children have sacrificed so much over the past four years.

Quote:
Originally Posted by maroo View Post
Ok...

I am copying this in several places...so if you follow my pretrip reports and such...you may see this more than once...

We leave MONDAY to go to Disney.

I am going with my friend Rachel (not to be confused with Lauren, who is pictured below) as her nurse and to help "guide" them in Disney.

Rachel's condition is terminal and we almost lost her in July/Aug of this year - after an ICU stay...she finally has gotten a LOT better in the past few months.

But within the last few days she is having all sorts of issues with seizures, confusion and she is now sick - 101F fever and a lung infection. It is not pneumonia. Her doctor was talked into letting her go - and gave us a list of instructions - including staying in the room if she is sick.

I am asking you guys to please pray for her - that she would feel better and feel GOOD for this trip!

Also that the weather would hold out for us...specifically that it would not be so cold. Right now some forecasts are saying that it may be as low as 41F at night...which is cold to these people from MS!

I would appreciate you guys praying for the trip!
Many prayers going out to Rachel that she's feeling well enough to enjoy her trip.

Quote:
Originally Posted by pnutallergymom View Post
Thanks for all the input Maroo!!
Kelly, We have met before at CHB. I follow Alli's CB page...I am Brigitte's mom, Shannon. Congrats on MAW. I would highly suggest subscribing to TourGuide Mike's website. It has great information on it, but I also like to have something to hold in my hands and look at too when I am planning, and the 2010 Unofficial Guide to Disney is great too!! They make a version for kids too, which would make a great holiday gift!!!
Aaahhh, I remember! I think we met on the CCS floor right after Ali had her feeding tube placed - Jessica introduced us. Congrats on a wish for Brigitte! How is she doing? I don't get on CarePages much anymore because I tend to have log-in problems there. I will check out TourGuide Mike's website, and I'll have to look into the Unofficial Guide for kids - that could make a great Christmas gift for all three kids.

We're still waiting to hear from Ali's wish granters, though we don't really expect to hear anything until the middle/end of next week. I just want dates so I can start planning in earnest! And speaking of, can anyone tell me about crowds and weather in mid to late April? Our vacation falls the week of April 17th, so that's when we are looking to go. Ali does have many issues with heat, so I'm a little concerned about that, but we are already so limited when it comes to vacation time. I'm thinking we'll be spending lots of time cooling off in the wish lounges, which is fine because that would give my husband and 17 year old time to ride some of the big kid rides without dragging around two tired, overheated little girls.

Thanks!
Kelly
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Old 12-12-2009, 10:51 AM   #3584
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Okay, I couldn't resist. Even though we don't have dates, I did start a PTR.

http://www.disboards.com/showthread....0#post34640980
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Old 12-12-2009, 10:02 PM   #3585
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Quote:
Originally posted by momma_mouse
Thanks! That's good to know. Now I can just buy when we get there instead of trying to pack it on the airplane. I e-mailed Disney and they were not very helpful with a list of foods she could eat. They seemed to only want to help out with table service meals which we won't have any of. So, I guess we will be packing all of her meals. They listed a couple of counter service places, but not safe foods for her.
I'm not sure what email you used, but if you used the general WDW email, I just wanted to point out that there is some specific contact information for special dietary needs. Most people have found the information helpful when they have used those, so if you used them and did not find it helpful, I'm sorry to hear that.

The contact numbers and emails are listed in post #3 of the disABILITIES FAQs thread. You can find a link to that thread in my signature.

To maroo, sending hope and pixie dust for Rachel to be well enough to have a good time at WDW.
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