Make a Wish (and other organizations) - Wish Trippers UNITE! Volume THREE! :)

[maroo]

Kelly, this surprises me because we just returned from our MAW trip and took our foster son who is 6. In fact he was only with us for 2 weeks when we left and our caseworker coordinated with MAW and a judge to allow us to bring him.

We had a lovely quiet trip, had the pleasure of meeting with Maroo and got to brave the very unfriendly temperature the Florida was offering. We safely got through security with 2 wheelchairs, 1 car seat, a ventilator, a BIPAP machine, 2 oximeters, an nebulizer, 2 joey pumps, 1 suction machine and all of the tubes, batteries, meds and other equipment associated with them. I can't say enough for the airports (Pittsburgh and Orlando) as well as Southwest Airlines in getting us there and back again.

I do want to send a heads up for anyone whose child can't transfer from his/her wheelchair that there are very few rides at the Magic Kingdom you can utilize (train, Small World, Aladden, Pooh were the only ones I could find).

You can no longer ask to ride in the front of the monorail due to guests getting into fights over who gets to go.

Ice cream every day is good for you (especially when it's free).

Karen

Hi there! I enjoyed meeting you, too!

I am totally impressed with how much equipment you guys had and toted around.

In addition to the Train, Small World, Aladden, Pooh...We rode Buzz Lightyear in her wheelchair, too. And you can get on Jungle Cruise in your wheelchair.

I guess that is all at MK? Most of the shows are accessible...Not sure about Carousel of Progress? Snow White?

Toy Story (in DHS) is another great ride that you can ride in your wheelchair.

Yeah...guests will never be allowed to ride in the front again, I don't think. I am sure that OSHA or someone won't ever let Disney take the risk after the accident.

Do the Avis rental vans with the lifts have anywhere to put a wheelchair that does not have tie downs and not fold it? Like secure it with a seatbelt and let Ty ride in a seat? I am debating on which wheelchair to bring. His old one would be the best choice to bring because it has the headrest and better seat but it does not have the transit option and is a huge pain to fold and put back together. His new one is a very basic wheelchair with nothing other than a cushy seat and sling back. But it does have the transit hooks and is easier to fold.

Question...does it not have the transit option because it isn't sturdy enough to be strapped in? Or only because it doesn't have the specific hooks?

Lauren's has hooks and you just hook it in...

But Rachel's is plenty sturdy, but has no hooks. We ended up buying these heavy...rope like things? I don't know what you call them...I will have to ask...but you just loop them around the base of the back of the wheel and then attach the hook to that...

I would have to take a picture of this to show you...because I am obviously not able to explain it!

But is it a sturdy wheelchair and just doesn't have hooks?

Just wanted to let you know that I found a little more supportive info. from the TSA website. It says specifically:

"The limit of one carry-on and one personal item (purse briefcase or computer case) does not apply to medical supplies, equipment, mobility aids, and/or assistive devices carried by and/or used by a person with a disability."

This is the page I will be printing to take to the airport for Aidan's supplies. Hope I'm not on major overkill here. I just wanted to share what I found and hope that it might help you as well.

Here's the TSA link: http://www.tsa.gov/travelers/airtravel/specialneeds/before_you_go.shtm and it's the third one down.

This is GREAT info!

We own a Honda minivan and Phoebe rides in the regular van seat. I load the chair into the back of the van manually and just put the brakes on to prevent rolling. I know that in an accident it could fly around and be dangerous, which is one of the reasons we are looking at a new vehicle sometime this year. I would be surprised if a rental company supplied specially equipped vehicle like that but you could call and ask.

Oh gosh. Is it behind a seat? (The wheelchair?) Lauren rode in a carseat for the longest time. She is only 70 pounds and has one of those 100 pound big ones...but she hates it because she feels like a baby in it...so now she is happy riding in the van in her chair.

I'll be here a few more days, so if anyone else wants post cards, please pm addy.

Yesterday was SO fun. I ran the carousel with two other people and we had LOTS of riders. Ranking right up there with ice cream for breakfast is a ride on the carousel for 'afters', especially when one can ride all one wants including every different animal. And yes, if your little one is in a chair, there is a way s/he can ride!

I learned a few things new this trip.

They send you a packet of information before the trip about 1 month out, that answers many of the questions I've seen posted here.

We got one of these! By the time I got it...I could have written it. lol

You get a fairly thick booklet on check in, with even more answers in it. It's also accessable on line, but I've forgotten the address. search on GKTW.org

Is this the Bunny Book? We received a Bunny Book when we checked in and it had a lot of great info in it!

www.gktw.org is the GKTW address and you can click on Families and then "click here" if you want to see the "surprises" waiting for families. But if you are on this board....there are much fewer surprises!

GKTW is even bigger than ever - there's a whole new "park" with a basketball court. There's a 'candyland' playground. You could really spend the whole week at the village alone and have tons of fun and plenty to do.

I missed this! The Baskedball court? The Candyland Playground is awesome!

If at all possible, rent a vehicle. Transportation is available to the parks, but it is not convenient.

Most MAW chapters rent a car for the families. The families taking a shuttle are usually not driving for some reason (either by choice or because they can't drive??)

REMEMBER to take that extra empty suitcase.

Yes!!!

Happy Day, all!

These are all awesome points!!! Thank you so very much for volunteering at GKTW!!

Well it is official.... My DD3 was approved for a wish to Disney!

We gave our granters three different travel dates which weirdly enough all start at the begging of a month- 9/1, 12/1, & 4/1. So we will wait and see what they have for us. I've read on a few wish reports of people checking in on Thursday then one parent has to goto orientation thus missing out on the Christmas party. That is one of the reasons for the Wednesday check-in.

Once I start a PTR. I'll let you know.

 

[yinyanggirls]

Maroo, yes, the chair is placed in the back, behind the passenger seats. If I were in a fender-bender or rear-ender it should be fine. It would take a pretty major incident, but if the van were to roll (even partway) the chair would become airborne. I haven't had an accident in a dozen years or so, but you never know. It's one of our main concerns for the next vehicle.
Phoebe is just over 50 lbs and we upgraded to the 100lb seat last year. I'll keep her in it as long as she fits because of the 5 pt harness and because the high sides give her something to rest her head on. She ALWAYS falls asleep in the car. When my van was in the shop I drove DH's compact car and had her sit in the back seat without a car seat. She did better than I expected. I put the arm rest down to give her something to lean on. I am going to be talking with you and Sue some more when I'm ready to wheelchair and car shop.

 

[myasma]

Well it is official.... My DD3 was approved for a wish to Disney!

We gave our granters three different travel dates which weirdly enough all start at the begging of a month- 9/1, 12/1, & 4/1. So we will wait and see what they have for us. I've read on a few wish reports of people checking in on Thursday then one parent has to goto orientation thus missing out on the Christmas party. That is one of the reasons for the Wednesday check-in.

Once I start a PTR. I'll let you know.

That is great!!! Congratulations!!!!!

 

[Momofwishkid]

Well it is official.... My DD3 was approved for a wish to Disney!

We gave our granters three different travel dates which weirdly enough all start at the begging of a month- 9/1, 12/1, & 4/1. So we will wait and see what they have for us. I've read on a few wish reports of people checking in on Thursday then one parent has to goto orientation thus missing out on the Christmas party. That is one of the reasons for the Wednesday check-in.

Once I start a PTR. I'll let you know.

I cant wait to hear all about your planning!

 

[kellyw8863]

Okay, we have confirmed dates and times, and I couldn't be happier, nor could I be more grateful to the folks at MAW for working so hard to make this happen for us in a way that works perfectly!

We leave on Monday, April 19th at 11:55am, arriving in Orlando a little after 3pm, and then we leave Orlando on Monday, April 26th at 5:10pm, arriving back in NH a little after 9pm. Now the planning can begin in earnest!

Maroo, when you get a minute, would you mind adding dates into my link on the first page? And do you know how I can add dates into my thread title on my PTR?

Woot! Woot!

 

[that's nice]

That is great!!! Congratulations!!!!!

Thank you so much!

I read your update today. That is awesome news of clear scans for Mya!!!

I cant wait to hear all about your planning!

Thanks! I think I will start a PTR in a couple months or so. I guess when it gets closer. Although I don't actually have dates yet. LOL

Okay, we have confirmed dates and times, and I couldn't be happier, nor could I be more grateful to the folks at MAW for working so hard to make this happen for us in a way that works perfectly!

We leave on Monday, April 19th at 11:55am, arriving in Orlando a little after 3pm, and then we leave Orlando on Monday, April 26th at 5:10pm, arriving back in NH a little after 9pm. Now the planning can begin in earnest!

Maroo, when you get a minute, would you mind adding dates into my link on the first page? And do you know how I can add dates into my thread title on my PTR?

Woot! Woot!

Congrats on the dates!!!!

If you want to change/add to your PTR title you need to go to the first post of your PTR. Click on the edit button, then click on the go advanced button. You should see the title and can edit it from there!

 

[kellyw8863]

If you want to change/add to your PTR title you need to go to the first post of your PTR. Click on the edit button, then click on the go advanced button. You should see the title and can edit it from there!

Thank you! I just wanted to say, I've read your character meal TR and loved it!

 

[maroo]

Maroo, yes, the chair is placed in the back, behind the passenger seats. If I were in a fender-bender or rear-ender it should be fine. It would take a pretty major incident, but if the van were to roll (even partway) the chair would become airborne. I haven't had an accident in a dozen years or so, but you never know. It's one of our main concerns for the next vehicle.
Phoebe is just over 50 lbs and we upgraded to the 100lb seat last year. I'll keep her in it as long as she fits because of the 5 pt harness and because the high sides give her something to rest her head on. She ALWAYS falls asleep in the car. When my van was in the shop I drove DH's compact car and had her sit in the back seat without a car seat. She did better than I expected. I put the arm rest down to give her something to lean on. I am going to be talking with you and Sue some more when I'm ready to wheelchair and car shop.

Yeah...That makes sense! And she is still quite young. I am sure when she is 16 she will fight you to ride in her wheelchair. But I suppose she will be fighting with you about lots of things.

That will be great! Do you have my phone number? If not...PM me and I will give it to ya.

Okay, we have confirmed dates and times, and I couldn't be happier, nor could I be more grateful to the folks at MAW for working so hard to make this happen for us in a way that works perfectly!

We leave on Monday, April 19th at 11:55am, arriving in Orlando a little after 3pm, and then we leave Orlando on Monday, April 26th at 5:10pm, arriving back in NH a little after 9pm. Now the planning can begin in earnest!

Maroo, when you get a minute, would you mind adding dates into my link on the first page? And do you know how I can add dates into my thread title on my PTR?

Woot! Woot!

Woo Hoo!!! Sure!

 

[that's nice]

Thank you! I just wanted to say, I've read your character meal TR and loved it!

Thanks for reading it!

There are only 3 character meals we haven't done. 'Ohana, Tusker House, and Cape May. I think 'Ohana & Tusker house are going to be must do's in the near future! My DD is on a Lilo & Stitch kick right now. LOL

 

[jenb1023]

Thanks for reading it!

There are only 3 character meals we haven't done. 'Ohana, Tusker House, and Cape May. I think 'Ohana & Tusker house are going to be must do's in the near future! My DD is on a Lilo & Stitch kick right now. LOL

We love Tusker House - good food and good character interaction!

 

[twinmum]

We're heading down to WDW for a return visit (our son Mark's Wish Trip was November 2008). We're just wondering if there are any Wish families on the boards these days whose trip falls while we're there? It would be fun to meet up and say hello.

Alison

 

[yinyanggirls]

Well it is official.... My DD3 was approved for a wish to Disney!

We gave our granters three different travel dates which weirdly enough all start at the begging of a month- 9/1, 12/1, & 4/1. So we will wait and see what they have for us. I've read on a few wish reports of people checking in on Thursday then one parent has to goto orientation thus missing out on the Christmas party. That is one of the reasons for the Wednesday check-in.

Once I start a PTR. I'll let you know.

WOOHOO!!! How ironic that all your preferred dates are "firsts". And how nice that you were able to learn something from everyone else for a change. (about the Cmas party)

Okay, we have confirmed dates and times, and I couldn't be happier, nor could I be more grateful to the folks at MAW for working so hard to make this happen for us in a way that works perfectly!

We leave on Monday, April 19th at 11:55am, arriving in Orlando a little after 3pm, and then we leave Orlando on Monday, April 26th at 5:10pm, arriving back in NH a little after 9pm. Now the planning can begin in earnest!

Woot! Woot!

Hurray!!!! We are only two days off! I don't have flight times (wondering when I should start worrying about that???) but they confirmed the arrival date of Sat 4/17. Now there are three DISers that week? You, me and Ann. If we are all planning to do the Cmas party we should plan to meet up. Although, we are likely to run into each other anyway.

I know you are still knee deep in planning, but do you think you are going to do the other parks or just Disney? I'll keep my eyes open for any deals if you want to do the others. And don't forget that GKTW not only has all that fun stuff to do for free there, they also offer the airplane ride, and some free tix to other area attractions (like Gatorland and Kennedy Space Ctr). Just thoughts, not suggestions....I hope they change their minds about Gabe.

Yeah...That makes sense! And she is still quite young. I am sure when she is 16 she will fight you to ride in her wheelchair. But I suppose she will be fighting with you about lots of things.

That will be great! Do you have my phone number? If not...PM me and I will give it to ya.

That girl has a stubborn streak a mile wide. It's actually a good thing, because she gets real determined to do something! I'll pm you when we're getting serious....maybe after a tax return?

 

[dmbfan]

I'll be here a few more days, so if anyone else wants post cards, please pm addy.

Yesterday was SO fun. I ran the carousel with two other people and we had LOTS of riders. Ranking right up there with ice cream for breakfast is a ride on the carousel for 'afters', especially when one can ride all one wants including every different animal. And yes, if your little one is in a chair, there is a way s/he can ride!

I learned a few things new this trip.

They send you a packet of information before the trip about 1 month out, that answers many of the questions I've seen posted here.

You get a fairly thick booklet on check in, with even more answers in it. It's also accessable on line, but I've forgotten the address. search on GKTW.org

GKTW is even bigger than ever - there's a whole new "park" with a basketball court. There's a 'candyland' playground. You could really spend the whole week at the village alone and have tons of fun and plenty to do.

If at all possible, rent a vehicle. Transportation is available to the parks, but it is not convenient.

REMEMBER to take that extra empty suitcase.

Happy Day, all!

I have a question maybe you can help me with. We are going down there next month, and volunteering as a returning family two nights during out week trip, and I would love know about transportation. We are not renting a car cause we are staying on Disney property, but we need to get back and forth two nights. Cabs or shuttle. I have a number of one company I am going to call, but did know if you knew of anyothers...Thanks

 

[noahsketomom]

I think I may have posted this in the wrong spot, so I apologize....go easy....I'm new!!

I am brand new to this forum and I am so grateful for it! I have learned so much in the few hours I have spent reading people's trip reports! THANK YOU!!

A Brief Intro -- My son Noah will most likely be granted his Disney Wish for sometime this Spring. We have met with our wish volunteers and are waiting for a date. We most likely will be staying at Give Kids the World.

Noah is 4 and has Doose syndrome, or myoclonic astatic epilepsy. The treatment that has proven most effective, in addition to medication, is the ketogenic diet. Is there anybody out there that has done this trip with a keto kid? I am currently freaking out about all the planning involved with his meals. In a nutshell, every gram that goes in his mouth must be measured. So other than water, he can't have any meals out. I will most likely have to make all his food and transport it to the parks and whatnot. The thing that I worry about is him seeing something that his siblings can have that he cannot. We also have a DS (9), DD (7), and a DD (3). It's inevitable that they won't get excited about something edible they see, I know, but I just want the trip to be focused on FUN, not FOOD!! Any tips on this, or if anybody has done this on the ketogenic diet, I'd love to hear what you have to say!

More to come as details emerge!!

Thanks for sharing all your stories --- they encourage me so much!!!

Best,
Beth
mom to John (9), Abby (7), Noah (4 - Wish kid, keto kid, doose kid), and Ella (3)

 

[maroo]

I think I may have posted this in the wrong spot, so I apologize....go easy....I'm new!!

I am brand new to this forum and I am so grateful for it! I have learned so much in the few hours I have spent reading people's trip reports! THANK YOU!!

A Brief Intro -- My son Noah will most likely be granted his Disney Wish for sometime this Spring. We have met with our wish volunteers and are waiting for a date. We most likely will be staying at Give Kids the World.

Noah is 4 and has Doose syndrome, or myoclonic astatic epilepsy. The treatment that has proven most effective, in addition to medication, is the ketogenic diet. Is there anybody out there that has done this trip with a keto kid? I am currently freaking out about all the planning involved with his meals. In a nutshell, every gram that goes in his mouth must be measured. So other than water, he can't have any meals out. I will most likely have to make all his food and transport it to the parks and whatnot. The thing that I worry about is him seeing something that his siblings can have that he cannot. We also have a DS (9), DD (7), and a DD (3). It's inevitable that they won't get excited about something edible they see, I know, but I just want the trip to be focused on FUN, not FOOD!! Any tips on this, or if anybody has done this on the ketogenic diet, I'd love to hear what you have to say!

More to come as details emerge!!

Thanks for sharing all your stories --- they encourage me so much!!!

Best,
Beth
mom to John (9), Abby (7), Noah (4 - Wish kid, keto kid, doose kid), and Ella (3)

to the Wish Trippers Thread! And to the DIS!

You have posted in the right place!

Check out the first page of this thread - on the 2nd post - and there are some frequently asked questions and such that may help you guys out!

Otherwise...feel free to ask questions here. We look forward to getting to know you guys!

 

[yinyanggirls]

Hi Beth! Welcome! This site, and these people, are so helpful. Many are recent or future WISH trippers, but there are also some "old pros" here who know a lot about GKTW and WDW.
My wish kid Phoebe is undiagnosed, but likely has a genetic syndrome. Among other things she has had periods of seizure-like activity, but have never actually recorded one during a test. I know many people have had success with the ketogenic diet. Does Noah have a problem with the food he is given normally, or only if he sees what others have that is different? Just off the top of my head, I was thinking you guys could divide up for meal time, alternating which child accompanies Noah. I don't like suggesting the family split up, but what good is together time if it's spent full of anxiety and tears? Just a thought that popped in my head. I hope others here will have some good advise for you. You may also check out the DISabilities board, which focuses on traveling to Disney with special needs. They are not just Wish families, so there would likely be more people there who have experience. (The main DIS page shows links to various types of topics, Pre-trips, Trip Reports, traveling alone, etc. One of those topics is DISabilities.)

 

[Thumper321]

I am fairly new here, too, but I can assure you that the people here are so helpful, supportive, and full of answers. My son, Aidan, is my Wish Kid. He has Shwachman Diamond Syndrome and panhypopituitarism, in addition to other secondary medical issues. I wish I could help with the keto diet, but I am not familiar with it. Maybe somebody on here will be able to help.

 

[noahsketomom]

Hi Beth! Welcome! This site, and these people, are so helpful. Many are recent or future WISH trippers, but there are also some "old pros" here who know a lot about GKTW and WDW.
My wish kid Phoebe is undiagnosed, but likely has a genetic syndrome. Among other things she has had periods of seizure-like activity, but have never actually recorded one during a test. I know many people have had success with the ketogenic diet. Does Noah have a problem with the food he is given normally, or only if he sees what others have that is different? Just off the top of my head, I was thinking you guys could divide up for meal time, alternating which child accompanies Noah. I don't like suggesting the family split up, but what good is together time if it's spent full of anxiety and tears? Just a thought that popped in my head. I hope others here will have some good advise for you. You may also check out the DISabilities board, which focuses on traveling to Disney with special needs. They are not just Wish families, so there would likely be more people there who have experience. (The main DIS page shows links to various types of topics, Pre-trips, Trip Reports, traveling alone, etc. One of those topics is DISabilities.)

Hi Melissa,
Thanks so much for your note! I will be checking out a lot of the pages and links...as time permits with the kiddos!! I'm with you on not really wanting the family to split up, but we might have to at times, like when we go to the ice cream shop or whatnot. Noah can have "keto ice cream", but just not sure he'll want to when he sees all the other options the others can have. He is a rockstar usually and, at four, has handled this EXTREMELY well. But if there's something yummy dangling in front of him that he can't have, I am sure he will be sad.

I cannot say enough good things about the keto diet, though I also curse it every day! It is a TON of work, but it has given us our son back! (He was in the hospital for a month and a half this summer, essentially in non-convulsive status several times, just fading before our eyes) We had originally planned a family trip to Disney which was cancelled when he took such a bad turn this summer. We are SO excited for this trip, but I am just a bit nervous too! He's clinically seizure free right now and I just don't want to screw it up and wake up the seizure beast!

Does anybody have any suggestions about bringing "help" along or not...in the form of a grandmother and an aunt? My mom and sister were planning on going on the original trip, so they might book their own trips down there during our time to help with the adult/kid ratio. Is it easy for folks who are staying out of GKTW to spend time inside with us? Thoughts on whether this is encouraged or frowned upon? Thoughts on where they should stay if they do come?

Thanks, in advance. I LOVE seeing pictures of all your beautiful children!!!

 

[cantwaittoseemickey]

Yayy Kelly!! That is great news! I hope they come around for Gabe sweetie!

Beth Welcome!! I can't wait to read your ptrI am not familiar with the Keto Diet (aside from what I saw on "First Do No Harm") but I know if it came down to it we would definately consider that for Ty. His siezures are not as bad at least right now. Although we are very cautious with puberty coming as the neurologist told us to beware that it could cause more problems.

 

[kellyw8863]

Does anybody have any suggestions about bringing "help" along or not...in the form of a grandmother and an aunt? My mom and sister were planning on going on the original trip, so they might book their own trips down there during our time to help with the adult/kid ratio. Is it easy for folks who are staying out of GKTW to spend time inside with us? Thoughts on whether this is encouraged or frowned upon? Thoughts on where they should stay if they do come?

Thanks, in advance. I LOVE seeing pictures of all your beautiful children!!!

First of all, welcome! My mil/fil are both coming with us. We feel very strongly that we need another adult who can drive should something happen to Ali while we are down there. It might sound a little over the top, but if she gets sick and needs antibiotics, or if Florida is in the midst of a premature heat wave, she will need to be admitted. My non-wish child would be positively devastated if this happened and "ruined" the trip for her. They have the financial resources to pay for themselves, and since they are retired, they also have the time.

I have heard through the grapevine that GKTW's villas do accommodate seven, so I'm hopeful that they will be able to stay with us even though they are not officially included as part of Ali's wish. I know that they will be more than happy to make a donation to GKTW in appreciation of this. Hopefully someone else can answer your question a little more thoroughly - I'm interested in learning more as well!

Yayy Kelly!! That is great news! I hope they come around for Gabe sweetie!

Thanks! Unfortunately, it's a no go with Gabe. I have a feeling we might have been more successful had his social worker been more helpful, but that wasn't the case. We are paying OOP for him, with which my inlaws are helping us. And, he's signed up for GAD/GAD, so we're confident we'll make it work!