Wish Trippers...Unite!! Volume One

[llurgy]

Hi,

I am the mom to two great kids. My youngest, Sami, has Rett Syndrome and we just got our dates today for our wishtrip to Disney. We are flying out on March 27. It seems a long way away, but I know it will most likely go very quickly. I've been reading your posts for a while now. I have even cheated and wrote out a plan using Sebastian's mom amazing itinerary. Since I have two girls, one in a wheelchair, there have been tweeks, but since we have never been to Disney, it gave me a good place to start. I have to admit that I'm feeling a little overwhelmed. I want to get as much in as we can, but not so much that every body just ends up tired, cranky, and miserable. Many of my questions have already been answered by reading the posts, but one that I've been thinking about that I haven't seen answered is this: Since my daughter is incontinent, are there handy places to change her . At 13, she is quite large and it's very difficult to manuever around in a handicapped stall, but that is usually what we have to do when we are out and about. I'm sure I will have lots more questions, especially as things get closer. If anyone has any do-not-miss-whatever-you-do rides/shows etc for a diehard Toy Story/Finding Nemo/Monster's Inc fan like my Sami, please let me know.

Tammy

For the restroom question I would look at the disabilities FAQ thread and there is a link on post number three that takes you to AllEars.com with some info about Companion rooms.

Great that you have a wish trip in the making
Becca our12 year old DD is going on hers January 21st!!

 

[llurgy]

Forgive the dancing banana in the middle of my post. I must have hit a wrong button some where...

Nothing wrong with a Dancing Banana

 

[maroo]

Hi,

I am the mom to two great kids. My youngest, Sami, has Rett Syndrome and we just got our dates today for our wishtrip to Disney. We are flying out on March 27. It seems a long way away, but I know it will most likely go very quickly. I've been reading your posts for a while now. I have even cheated and wrote out a plan using Sebastian's mom amazing itinerary. Since I have two girls, one in a wheelchair, there have been tweeks, but since we have never been to Disney, it gave me a good place to start. I have to admit that I'm feeling a little overwhelmed. I want to get as much in as we can, but not so much that every body just ends up tired, cranky, and miserable. Many of my questions have already been answered by reading the posts, but one that I've been thinking about that I haven't seen answered is this: Since my daughter is incontinent, are there handy places to change her . At 13, she is quite large and it's very difficult to manuever around in a handicapped stall, but that is usually what we have to do when we are out and about. I'm sure I will have lots more questions, especially as things get closer. If anyone has any do-not-miss-whatever-you-do rides/shows etc for a diehard Toy Story/Finding Nemo/Monster's Inc fan like my Sami, please let me know.

Tammy

Tammy...WELCOME!!!! You have found a great place to share your plans, etc.

Yes! There are great places to change her. My TR (link below) has our trip report and we had a child going in a wheelchair (she is 15, but quite small - 70 lbs)...so some info you might need is on there. Although, we did get sick during our trip (still had a WONDERFUL time) so we didn't see all the parks.

At the Magic Kingdom there is a First Aid building after you go through Main Street. It is right next to the Wish Room (which is great for resting, getting some water, just having down time). They have great "exam rooms" with those big exam tables, just like you would find in a doctors office. You can use those, go in there, close the door, etc. They even have stuff at the "baby" center (wipes, etc) if you forgot some of that stuff.

This is not something I detailed in my TR, because, well, for obvious reasons, I guess.

We also used First Aid at Disney Hollywood Studios a few times. It is located near the front of the park. Same deal there, great rooms.

They have First Aid at each Disney Park and 2 of them at Sea World.

Sea World requires a LOT of walking...that was one thing that my research did not teach me...or at least did not stress enough.

I could tell you a million things...but I will stop there. You have lots of time to plan.


I hope you will do a Pre-Trip report! There are several active ones on the Pre-Trip report board. You can go to "Disney Trip Reports" and then "Pre Trip Reports and Plans" and see about 7, at least, current pre-trip reports for Wish Families.

You can post your plans and we can help answer questions, etc.

Let us know if you start one (with a link) so we can "subscribe" and follow your plans.

Ok...I will be quiet now...

 

[Momto2redheads]

Thanks for the response about the first aid stations. I will have to work those in to my schedule. I've also put your trip report into "my favorites". I'm sure I will see a lot of good tips there. I'm sorry your were sick; I've already made everybody get a flu shot hoping to ward off some of the buggies.

 

[Momto2redheads]

[ My TR (link below) has our trip report and we had a child going in a wheelchair (she is 15, but quite small - 70 lbs)...so some info you might need is on there.


NO FAIR. I started reading your trip report at work when I was completed broadsided by the rainbow story. It's totally not cool to be bawling at your computer terminal. (I..I..mean I'm not at work, I'm...umm...at home, yea that's it. I totally work all the time at work. I don't look at Disney boards. )

Tammy

 

[maroo]

Thanks for the response about the first aid stations. I will have to work those in to my schedule. I've also put your trip report into "my favorites". I'm sure I will see a lot of good tips there. I'm sorry your were sick; I've already made everybody get a flu shot hoping to ward off some of the buggies.

Aww.... yeah...don't forget your kleenex... it was a trip of a lifetime for us! But a rollercoaster of ups and downs... Mostly ups, though, and the ups outweighed the downs!!!

Also...each child has a different Wish experience. We are all given the same tickets to the same parks...and basically the same stuff (although we did have a strange deal staying at The Contemporary...which was nice, but we missed some stuff, too!) ... anyway....we all get the same tickets...but each family has such a different experience.

You may not have had time to read about all of the TR's...but there are some amazing magical moments. Like one child wanted to meet Peter Pan...and he got to...PLUS Peter Pan called him by name and waved to him in a parade...totally magical (talk about needing some kleenex!!). And there are kids that have gotten to feed and touch the dolphins (happens more often now that folks know about it.) There was a boy that got to meet all of the Power Rangers and THEN...take pictures with ALL of them in THEIR car!!! One of the kids might get to see the shuttle launch! Etc, etc...But ALL of them had a magical moment...some time when they felt like VIP's...and awesome character interaction...anyway...all that to say... not everyone gets the rainbow deal (that was rare) or some other special moments...but you guys will get some!

NO FAIR. I started reading your trip report at work when I was completed broadsided by the rainbow story. It's totally not cool to be bawling at your computer terminal. (I..I..mean I'm not at work, I'm...umm...at home, yea that's it. I totally work all the time at work. I don't look at Disney boards. )

Tammy

Sorry, should have warned you! I am sort of stuck on a project at work...so here I am... And I have laughed OUT LOUD at my computer before at some of these TR's!! Hilarious... and had my share of kleenex moments, too! So...no shame needed!!


Also...I have a question for you...and I apoligize if I should already know this...

so you have 2 kids? Is the child in a wheelchair the same child that has Rett's syndrome? Or do you have two special needs children?

 

[Momto2redheads]

I have two great girls. My oldest is 16 and a great big sister. My youngest is 13. She has Rett Syndrome. Rett Syndrome is a neurological and developmental disorder. I hate Rett Syndrome. My baby girl seemed fine for the first 18 months or so of her life. Seemingly overnight she lost her ability to walk, talk, feed herself, just about everything. She still cannot walk, talk or use her hands. However, she understands just about everything that is said to her. From what we can tell, her IQ is near normal, but she is trapped in a body that will not cooperate. It is devastating. It's an x-linked disorder meaning that the mutation is so severe that the vast majority of boys that have it do not survive more than a day or two after they are born, if they manage to hang in for that long. Girls have two X chromosones, so one chromosone helps pick up the slack for the other damaged X. 99.9% of people living with RS are girls. She actually qualified for her wish, though, because many girls with RS do not survive their teen years (though there are some women with RS that are now in their 40's) due to pneumonia or a sudden death type thing somewhat like SIDS. Julia Roberts (the actress) meet a girl with RS through her sister. She did a great little program that has been shown on television about the disorder. Sadly, the girl that Julia Roberts met has passed away. I believe she was 10. I've known for a while that Sami would most likely qualify for a wish, but I've been putting it off because I wanted to think of something that she would really love. After a scary bout of pneumonia in September of this year, I decided I had waited long enough. She LOVES Toy Story, Finding Nemo and Monsters Inc. with all of her heart. After I started researching Disney, I realized how many things there are down there that involve these characters. Sami won't really care a thing about Mickey, but I believe she will be over the top when she sees Woody, Sully, Nemo etc. Her older sister loves Sami with all of her heart, but its been hard on her in ways a lot of teens (and adults) will never understand. I'm very excited and grateful that both of my girls are getting this amazing opportunity. Okay, I've babbled enough.

 

[maroo]

I am SOOO excited! Did you guys know that Hank should be at the shuttle launch today. And it actually went off!! The shuttle launched and they were supposed to have VIP seats!!! It is all here, if you guys want to read about him...his Mom, "Lambflock" has posted here...but for the new folks, here is a link...

I am so excited for them! I hope they got there! I hope they had a blast!

LINK TO LAMBFLOCK's PRE-TRIP REPORT

 

[jessica52877]

My understanding is it was a perfect evening too! My mom lives about 2-3 hours south and they saw it and it was quite clear, unlike normal. Imagine being right there! I am so glad they got to do this!

We did it when I was 3 and I remember it to this day!

 

[oklamomof4boys]

I am SOOO excited! Did you guys know that Hank should be at the shuttle launch today. And it actually went off!! The shuttle launched and they were supposed to have VIP seats!!! It is all here, if you guys want to read about him...his Mom, "Lambflock" has posted here...but for the new folks, here is a link...

I am so excited for them! I hope they got there! I hope they had a blast!

LINK TO LAMBFLOCK's PRE-TRIP REPORT

That is so exciting! I sure hope they are having fun- I know they are!

Okay, another quick question as I pack- do they have hair dryers at GKTW or do I need to pack mine?

 

[Khalana]

Just wanted to let everyone know: WE'VE GOT PIXIE DUST the BIG GIVE way!!!!!

I've updated my TR with pictures of the amazing blessings sent our way!!!!

WOOOHOOO!!!!!!

 

[Khalana]

I am SOOO excited! Did you guys know that Hank should be at the shuttle launch today. And it actually went off!! The shuttle launched and they were supposed to have VIP seats!!! It is all here, if you guys want to read about him...his Mom, "Lambflock" has posted here...but for the new folks, here is a link...

I am so excited for them! I hope they got there! I hope they had a blast!

LINK TO LAMBFLOCK's PRE-TRIP REPORT

My understanding is it was a perfect evening too! My mom lives about 2-3 hours south and they saw it and it was quite clear, unlike normal. Imagine being right there! I am so glad they got to do this!

We did it when I was 3 and I remember it to this day!

That is SO exciting for them!!!!!! What a magical experience!

 

[maroo]

I have two great girls. My oldest is 16 and a great big sister. My youngest is 13. She has Rett Syndrome. Rett Syndrome is a neurological and developmental disorder. I hate Rett Syndrome. My baby girl seemed fine for the first 18 months or so of her life. Seemingly overnight she lost her ability to walk, talk, feed herself, just about everything. She still cannot walk, talk or use her hands. However, she understands just about everything that is said to her. From what we can tell, her IQ is near normal, but she is trapped in a body that will not cooperate. It is devastating. It's an x-linked disorder meaning that the mutation is so severe that the vast majority of boys that have it do not survive more than a day or two after they are born, if they manage to hang in for that long. Girls have two X chromosones, so one chromosone helps pick up the slack for the other damaged X. 99.9% of people living with RS are girls. She actually qualified for her wish, though, because many girls with RS do not survive their teen years (though there are some women with RS that are now in their 40's) due to pneumonia or a sudden death type thing somewhat like SIDS. Julia Roberts (the actress) meet a girl with RS through her sister. She did a great little program that has been shown on television about the disorder. Sadly, the girl that Julia Roberts met has passed away. I believe she was 10. I've known for a while that Sami would most likely qualify for a wish, but I've been putting it off because I wanted to think of something that she would really love. After a scary bout of pneumonia in September of this year, I decided I had waited long enough. She LOVES Toy Story, Finding Nemo and Monsters Inc. with all of her heart. After I started researching Disney, I realized how many things there are down there that involve these characters. Sami won't really care a thing about Mickey, but I believe she will be over the top when she sees Woody, Sully, Nemo etc. Her older sister loves Sami with all of her heart, but its been hard on her in ways a lot of teens (and adults) will never understand. I'm very excited and grateful that both of my girls are getting this amazing opportunity. Okay, I've babbled enough.

First of all...bless your heart!

I am so sorry. I can't imagine being in your shoes...I am not even a Mom...but that makes me so, so sad for you guys.

And I do feel for your oldest daughter...it is hard on the siblings, too!

Give Kids the World does a GREAT job including the siblings. Some things I think will be cool to your older daughter at GKTW...they have an arcade, pool table and a movie theater! Lauren enjoyed the movie! It was pretty cool.


Sami will have a wonderful time in Disney. You all will.

There are several things at the parks that will interest her...

Toy Story, the ride, is at Disney Hollywood Studios. I also have seen Woody and Buzz at the Magic Kingdom.

Monsters, Inc., the show, is at Magic Kingdom. On that one, make sure you read the "instructions" on the wall...because they will tell you text a joke to a number and stuff like that. They actually use that stuff in the show.

Although I have not seen it, there is a ride in Epcot about Nemo. It is supposed to be wonderful.

Gosh...that is Magic Kingdom, Hollywood Studios and Epcot! You guys are going to be busy!!

and I bet that she will get pretty excited when she sees the other characters, too!

Definitely plan for lots of rest stops, etc. We did not get nearly as much done in a day as I thought we would. So little, in fact, that if we go back, we won't get park hoppers. Just too much traveling with Lauren's wheelchair and all of that. You know how it is...it just takes a long time to get from here to there when you add all of this stuff.

I am so glad that you found this trip board. And I am looking forward to reading about your adventures! You can PM me (private message) if you ever have any questions. I do check this board fairly frequently...except on the days that I am at Lauren's house. I tend to get busy when I am over there.

 

[SueM in MN]

Since my daughter is incontinent, are there handy places to change her . At 13, she is quite large and it's very difficult to manuever around in a handicapped stall, but that is usually what we have to do when we are out and about. I'm sure I will have lots more questions, especially as things get closer. If anyone has any do-not-miss-whatever-you-do rides/shows etc for a diehard Toy Story/Finding Nemo/Monster's Inc fan like my Sami, please let me know.

Tammy

As maroo already mentioned, the best place is probably going to be the First Aid Stations. They all have rooms with cots in that you would be able to use.

If your daughter can stand, there are Companion Restrooms in every park. Those are larger and more quiet than a handicapped toilet stall, but most do not have a changing table that would meet your needs.
On our recent trip, I did a 'survey' of all the Companion Restrooms in each park (plus, I took pictures). I don't have the pictures or all the information posted, but the information about Epcot's Companion Restrooms is in post #5 of this FAQs thread about Epcot from the disABILITIES Board.
I have the same information about the other parks, just don't have it posted yet.

 

[bex271]

How did you cash your expense check? did you do travelers checks or prepaid cards? We're getting ours today and just wondered what worked best. Just trying to think ahead.

becca

 

[maroo]

How did you cash your expense check? did you do travelers checks or prepaid cards? We're getting ours today and just wondered what worked best. Just trying to think ahead.

becca

We put the money in the bank. Lisa paid herself back for the food we had already bought and the few ADR's that required prepayment, as well as the MNSSHP tickets. Then we did a budget and figured out how much gas, spending money, souvie money, counter service meals, etc., and got that in cash. We gave each person $10 per day for snacks (cokes, coffee, mickeybars, etc). We also had cash in an envelope for each counter service meal we were going to have. We also had cash for the kids souvie money.

It WAS a lot of cash. We put the gas money in the van, so it was locked up at all times. and the rest...we had it all separated out and put by days.

And we hid it...so we didn't carry a lot on us.

Then she just used her debit card for any "big" meals...like Rainforest Cafe, The Wave, 50's Diner, etc.

That worked out for us. Easier than travelers checks.

Hope that helps. You can PM if you have any questions about how we managed it.

 

[MondoWishes]

My daughter has been selected to go on her wish trip in April. I'm new to this and am trying to find the places my friend and fellow wishtrippers, Sebastian, with his family (Amber) is telling me about. AM I THERE? Help ! THANKS.

 

[AmberGreenawalt]

YAY!!!!!!!!!!!!!!!!!!!!!!! Hi Kellie!!! You found us! WELCOME, WELCOME!

If you missed my post about this sweet family go back several pages and read up The Mondos are our neighbors! Both Sebastian and Abbie have wished to go to Disney! How cool is that?!

Kellie, I'm so glad you found this thread. These folks are WONDERFUL and have been soooo helpful in our planning. We've been on here for over six months and I can honestly say having this group to "talk" to has helped make the wait FUN!

I hope you get the time to go back and read through this thread because it answered like a million little questions we've had along the way.

Big Hugs!
Amber

 

[mom2lilnick]

Welcome Kellie, we are so glad to have you here!

 

[llurgy]

Welcome Kellie

Jump right in and tell us all about you and your family

We are very nosy on here
Whoops, did I say nosy??
I meant we are happy to answer any questions you may have

Mandy