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

[Happy_dreams]

Okay I'm going to burst if I dont tell someone...our MAW volunteers are coming tomorrow night to get things started "officially". Yes, we've been told Glo can make a wish and that WDW shouldn't be an issue but Gloria's making her wish official tomorrow! Things stalled for so long that I was beginning to wonder if I'd imagined it. I know it will still be a LONG process, but I'm glad something is happening.
Thanks for listening, my friends think I've finally lost it with all of my talk of Disney. I'd hoped maybe you would all understand my excitement! Thanks for letting me follow you all in your planning so I can get a Disney fix!

That must be so exciting and overwhelming and impossible to conceal it!!!! Im soo happy!!!!!!!!!!!!!!!!!!!!!! lol about your talk of Disney! Dont mind them! Keep on talking!!!!!!!!
Good luck with everyone!

 

[Happy_dreams]

I hope this means your doctor said Yes!! We're in Southwest Ohio and I called them right after our doctor's office suggested we would be eligible for a wish. You'll be able to speak to someone the same day you call and they'll tell you everything. Go to www.wish.org and find the office closest to you.
I'm so happy for you!!!
Kim

Sent you a PM .

 

[Bill_Lin]

Okay I'm going to burst if I dont tell someone...our MAW volunteers are coming tomorrow night to get things started "officially". Yes, we've been told Glo can make a wish and that WDW shouldn't be an issue but Gloria's making her wish official tomorrow! Things stalled for so long that I was beginning to wonder if I'd imagined it. I know it will still be a LONG process, but I'm glad something is happening.
Thanks for listening, my friends think I've finally lost it with all of my talk of Disney. I'd hoped maybe you would all understand my excitement! Thanks for letting me follow you all in your planning so I can get a Disney fix!

Congratulations! The fun really begins now. You will probably have a million questions for them, and they may not have all the answers. Feel free to ask me anything about trip planning, the parks or GKTW.

Blessings

Bill

 

[Loodlow]

Hi everyone! I feel like I already know so many of you, cause I have been a lurker on this thread forever. I am a pediatric nurse and have made many referrals for wishes. Recently, I referred my best friend's child. His wish trip is in the making! Junior is 13, and was my first home health patient when he was just a few months old. He was sent home to die. He has a metabolic disorder, and has surprised everyone! He is tube fed, trached and non-verbal, with no purposeful movement. BUT you should see his face light up when his mom puts on his Tinkerbell movie! I don't see many trip reports on here for kids with such severe disabilities, and we have tons of questions. He has a wonderful step-dad, and 2 adoring almost five year old identical twin sisters. There is little bitty possibility that I may get to go too! He needs 24 hour a day nursing care. The first question I have is about transportation. We are about a 16 hour drive from WDW but his mom is scared flying will be too hard on him with his diminished respiratory system. I am afraid driving that far will be too hard on everyone. Does anyone know if MAW has ever rented someone a handicapped travel trailer? I think he needs to be able to lie in a bed, with suctioning, tube feeding, oxygen etc. set up. I am rambling....I hope you will let me join your wonderful group on here, even if I am not Mom. She just doesn't have time to get on her computer, so I finally decided to jump in.

 

[maroo]

Hi everyone! I feel like I already know so many of you, cause I have been a lurker on this thread forever. I am a pediatric nurse and have made many referrals for wishes. Recently, I referred my best friend's child. His wish trip is in the making! Junior is 13, and was my first home health patient when he was just a few months old. He was sent home to die. He has a metabolic disorder, and has surprised everyone! He is tube fed, trached and non-verbal, with no purposeful movement. BUT you should see his face light up when his mom puts on his Tinkerbell movie! I don't see many trip reports on here for kids with such severe disabilities, and we have tons of questions. He has a wonderful step-dad, and 2 adoring almost five year old identical twin sisters. There is little bitty possibility that I may get to go too! He needs 24 hour a day nursing care. The first question I have is about transportation. We are about a 16 hour drive from WDW but his mom is scared flying will be too hard on him with his diminished respiratory system. I am afraid driving that far will be too hard on everyone. Does anyone know if MAW has ever rented someone a handicapped travel trailer? I think he needs to be able to lie in a bed, with suctioning, tube feeding, oxygen etc. set up. I am rambling....I hope you will let me join your wonderful group on here, even if I am not Mom. She just doesn't have time to get on her computer, so I finally decided to jump in.

You sound like me! My friends all call me "not the Momma"...but it sounds like you are a great friend to have!!

I have no idea how to answer your question. Every chapter really is different in what they will pay for - but they want the needs of the child met. I think, if you had an idea of exactly what they needed and how to make sure he was secure as he was transported that they would bend over backwards to make sure his needs were met.

to the boards!

Feel FREE to start a pre-trip report on their behalf! That is what I did for Lauren and I am still here two years later...so beware of a possible addiction.

 

[maroo]

How long does it usually take the process of make-a-wish faxing papaers to the doc, the doc siging them and MAW recieving and approving them? What happens next?

hello!!!

This totally depends on the doctor's office... And if it is anything like my office...it totally depends on who opens the mail!

But seriously...it all depends on the doctor and how fast they are at filling out paperwork (or his/her nurse)...

I gather from your other post that you would be the wish child? That would be cool!

Our daughter (Kaleah, wish child) Has a feeding backpack and on several meds that have to be refrigerated too. We always travel with a insulated luch bag, the soft kind and use the gel ice bricks. I don't know how long your flight is but if you use 3-4 small gel bricks they'll last about 4-5 hours. Do you get them from your DME or HME supply company with her feeding bags? If so just ask for more or have your doctor write an order for the amount you think you'll need.
We are having most of her things( extra diaper, pads, trach, G/J tube supplies, formula etc.) mailed to GKTW and seeing which items can be rented from a local provider( back up stationary bi-pap, blood pressure machine, pulse oximeter etc) Some of this equipment is so heavy and we'll use the portables until we get there. It's a challenge getting ready...but a good one.

Kim

this is a great idea!!! To ship it ahead of you guys!

"Yes." Oh how I wwant to hear that simple, yet life-changing word come out of my cardiologist's mouth. NO, he hasnt said yes because we haven't asked yet. We are going to ask him during my check-up appointment on the 16th- so not too far away! I am very uneasy about this. I don't if my condition merits it. But, I told my dad to cal our local office tomorrow morning! And he will, and he'll text what info he got from them-cus I'll be in school lol. There is only one wish office where I live.

I hope he says Yes! Keep us posted!

Congratulations! The fun really begins now. You will probably have a million questions for them, and they may not have all the answers. Feel free to ask me anything about trip planning, the parks or GKTW.

Blessings

Bill

 

[maroo]

ruh!!

I posted a LOT of responses from my stupid iPhone while I was gone and very few of them are here...

So...I went back a bunch of pages and am answering some of these again...Sorry if I repeat...

We are going on our MAW trip in November and want to go to the Mickey's Merry Christmas Party one of the nights. Should we buy tickets on our own or do they have those at GKTW? I have no problem buying them on my own and almost would rather, that way I know I have them. Just curious.

Mindy

I would ask them, but not count on it...if that makes sense.

I would not count on them buying the tickets for you. We just got back from our trip the other day. I had asked them a few months ago if they would provide us with tickets to the Halloween party for us as our "special thing" and they never did, so we were not able to go. Also, they did not set us up with any ADR's at any of the restaurants as a "special thing" either. We went to CRT, but I made those reservations and paid for it myself. Don't get me wrong, we are very happy with what we got, but just know that every chapter is different as far as what you get.

Yes! What she said!

And I can't stress the bolded information enough...ANYTHING you read on this thread is subject to change based on your chapter and what they offer, etc.

Can someone refresh my memory on how to start a trip report??
Can I just add on to my pre trip report? or am I supposed to start a new thread?

I think he helped you...but I wanted to say I am loving the report so far!!!!!

I am not sure how long they have been there. I actually found out about them on this forum. They are not on the park map. I remember when my daughter was 2 and we went down there, there was "baby lounge" behind space mountain. A CM actually approached us when they saw the stroller and asked us if we wanted to use the lounge, so my dad took my daughter in there while we rode space mountain and it was a room with a tv and chairs and stuff. I don't think its there anymore, they must have done something else with the space??

There is one by the First Aid building at the MK...but none by Space Mountain anymore. (if it was ever there...that was way before my time...)

We got back home last night from the most amazing trip ever!!! We took over 1000 pictures!!!
Will start a TR in the next couple of days.

I'm actually teary again as I finished the trip report. It was like realizing it really was over. I am so glad we will always have the report to relive this wonderful time!!!

I want to thank everyone who was there to help make it so GREAT from our friends here on the board, to the people at GKTW and all the parks.

I am excited to help other families plan their trips and to plan our next trip.

We are begining to set up our Spring Break trip to volunteer at the Village and we will be be there for the Cheerleaading World's in May with Neal on his 1st Disney Trip!!

Thanks to all of you for being part of our very special trip. It is one we will never forget!!

I am so glad the board was helpful to you!!!

Thank you so very much for writing your TR and finishing it!!! That means the world to those of us that try to help plan, etc. It is so awesome to see it all!

 

[maroo]

Welcome back

Thanks!

Welcome back!!
Missed you around here!!!

Thanks! Missed being here!

When you post above where you type there are some icons you can click to do different things...

#1 Next to Fonts there is a drop down box that says sizes-
#2 Next to the Sizes is an A with a little down arrow

When you are done typing, highlight what you have typed and it will turn BLUE. Then click on either the size tab (chose your size) or color tab(pick a color) and thats it!

You totally rock, Tim!

WOW that could of been horrible... I'm glad they were able to find your photos!!!!!!!






Welcome home Mary!

Thanks for the welcome! And in PINK!

Welcome Back Maroo!!!

Thanks!

Just made my first..and only ADR. We are hopefully going to Crystal Palace for lunch at 1:10 on March 22nd. I also made Kylee's BBB at 11:00am on that same day. I should be ok with the 2 reservations...right? The 3 older girls want to do the Pick A Pearl at Epcot. Do you make a reservation to do that?
Oh...this is my 500 post Thank you everyone for being part of Korissa trip planning. You all are awesome!!

Great choice! I just love the Crystal Palace!!

Hi everyone! I've been reading A LOT of trip reports and pre-trip reports! May I say they are amazing! The courage, hope, strength, and faith every Wish family shows has taken my breath away and touched my heart! The pictures are amazing, the stories...not a word that can descirbe them! I am a teen and in two weeks, I'll be asking my cardiologist if I am eligible for the make-a-wish foundation! If he says yes, then YAY! If he says no(which I think he will), then it's OKAY. Im just giving it a shot.

There is your introduction post! I missed it!!

again to the wish trippers thread! I hope he says yes!

Has anyone been during Christmas? We're going 12/23-28 and I'm using TGM planning tools and I am so worried about maneuvering through the crowds. Do you get to use the extra morning/evening hours if you're staying at GKTW?
Thanks
Kim

Hmm...This is a hard one.

First...I would say that usually TGM would have you avoid EMH parks anyway... They are usually so very busy. But all of the parks will be busy then and the hours will be very late - so EMH hours may be in the middle of the night...if you wanted to attend some, I really think you could talk to someone at Guest Services and they could make it happen for you.

You just have to have a key card to be able to ride any rides or really do much of anything in the park - and they do check (or did when I was there last week) - but it is up to the CM to tell you to leave and I just don't think they would tell a wish family that they had to leave?!?!? I may be wrong...but I think most any Guest Services manager would try to see what they could do to allow you to stay.

TGM Is going to tell you to get to the parks really early, then take a mid-day break and head back in the evening for anything else you want to see...

But being a wish trip and having the button...it ends up working out differently... even at Christmas, you will have basically a FastPass to every ride and front of the line access to characters...you will want to avoid crowds just because they are hard to get around, but lines won't be an issue. Most wish families can finish the park in a lot less time (as long as the medical stuff doesn't slow the family down)...

Then you can spend your mornings at GKTW with the characters there and eating breakfast, etc...and the evenings between the GKTW parties and other activities...and make an awesome trip.


Don't miss the Osbourne lights, though...they are amazing.

Thanks! Yeah , Im in it! Im the girl to the left with dark hair, light blue pants with the breast cancer shirt on at the :35 mark. And when we do the failed wave (lol) Im the first GIRL(two boys two the left started it-we actually i told them to do it hehehe) that does it.

You can notice the Puerto Rican flag at the top of the wall XD..that was Spanish Class..

I will watch this in a sec....

Yes, I do. I just love to see the excitement on everyone's faces as they get to escape reality for a week. I love volunteering at GKTW as much as I love my job and I'm 24.

I added this to our PTR, but wanted to put it here too. Our flights are booked! We leave early on Monday the 15th of November and we don't leave Orlando until 6pm on Sunday the 21st, so we should get some extra time at GKTW on the Monday and Sunday which will be nice. Found out that the tickets were booked yesterday and then got home last night to find out that my husband was called for jury duty during the whole month of November-ugh!! Luckily he called today and they said he could have a postponment. Now we're just waiting for more information from the wish granters. They said they would call toward the end of October to talk about his send off party. Getting excited!

Awesome!!!!!!!!!!!!!!

 

[LindaBabe]

The first question I have is about transportation. We are about a 16 hour drive from WDW but his mom is scared flying will be too hard on him with his diminished respiratory system. I am afraid driving that far will be too hard on everyone. Does anyone know if MAW has ever rented someone a handicapped travel trailer? I think he needs to be able to lie in a bed, with suctioning, tube feeding, oxygen etc. set up. I am rambling....I hope you will let me join your wonderful group on here, even if I am not Mom. She just doesn't have time to get on her computer, so I finally decided to jump in.

It would need to be a motor home or something similar because it's illegal and UNSAFE for people to ride in a trailer being towed.

 

[Haybuggsmom]

Does anyone have all the addresses for the parks? We will be taking our GPS unit to use in the rental car and I would like to pre-program all the addresses to the Disney Parks?

Can anyone help me out with the addresses or a link?

We are getting close and very excited for our trip!!!

I took mine with me becaus I am lost without my "little lady"
The best directions to the village came on the welcome sign. I then saved the location in to my gps..
The rest of the trip I used it only until I saw signs to the parks and to get "home" otherwise they did not give the best directions.

 

[Loodlow]

It would need to be a motor home or something similar because it's illegal and UNSAFE for people to ride in a trailer being towed.

I meant motor home lol, couldn't think what it was called.

 

[jen-y]

Posted Day 4 of my trip report. Will try and do day 5 today too. I am still catching up on housework and stuff from being gone

http://www.disboards.com/showthread.php?p=38486592&posted=1#post38486592

 

[nursekimber]

Hi everyone! I feel like I already know so many of you, cause I have been a lurker on this thread forever. I am a pediatric nurse and have made many referrals for wishes. Recently, I referred my best friend's child. His wish trip is in the making! Junior is 13, and was my first home health patient when he was just a few months old. He was sent home to die. He has a metabolic disorder, and has surprised everyone! He is tube fed, trached and non-verbal, with no purposeful movement. BUT you should see his face light up when his mom puts on his Tinkerbell movie! I don't see many trip reports on here for kids with such severe disabilities, and we have tons of questions. He has a wonderful step-dad, and 2 adoring almost five year old identical twin sisters. There is little bitty possibility that I may get to go too! He needs 24 hour a day nursing care. The first question I have is about transportation. We are about a 16 hour drive from WDW but his mom is scared flying will be too hard on him with his diminished respiratory system. I am afraid driving that far will be too hard on everyone. Does anyone know if MAW has ever rented someone a handicapped travel trailer? I think he needs to be able to lie in a bed, with suctioning, tube feeding, oxygen etc. set up. I am rambling....I hope you will let me join your wonderful group on here, even if I am not Mom. She just doesn't have time to get on her computer, so I finally decided to jump in.

Hi,
Junior has a lot in common with my Kaleah(wish child). We will be brining the same equipment as your wish child. We live in West Chester, Ohio and we were concerned about flying. Our MAW chapter is renting us a full sized handicapped van. We are a family of 6. They are also allowing us extra day or two for travel time. In the van the child can travel in their wheelchair, does his go into a full or part recline? If not contact his pt/ot therapist and they might be able to get a "loaner" for the trip. Our pt/ot at Cincinnati Childrens has been able to get us loaners for bathchairs and other devices at times.
I hope this is helpful.
Kim

 

[Happy_dreams]

hello!!!

This totally depends on the doctor's office... And if it is anything like my office...it totally depends on who opens the mail!

But seriously...it all depends on the doctor and how fast they are at filling out paperwork (or his/her nurse)...

I gather from your other post that you would be the wish child? That would be cool!






I hope he says Yes! Keep us posted!

Thans for the support! Yep, I'd be the wish child. Well, today I got by email the refferal forms and plan to print them and bring it to my upcoming visit to the doctor's. The manfrom make a wish who spoke with my dad said that the whole process can take at the most 6 months-just to get it apporoved. Is that true?

 

[Haybuggsmom]

Thans for the support! Yep, I'd be the wish child. Well, today I got by email the refferal forms and plan to print them and bring it to my upcoming visit to the doctor's. The manfrom make a wish who spoke with my dad said that the whole process can take at the most 6 months-just to get it apporoved. Is that true?

I think it varies. Our neighbor went on their trip about a year after they origional application. They went through Make a Wish.

We were though a different orginization and ours was about 4 months.

 

[Happy_dreams]

I think it varies. Our neighbor went on their trip about a year after they origional application. They went through Make a Wish.

We were though a different orginization and ours was about 4 months.

Oh okay! Thank you so much! The guy actualy told my dad not to freak out if we don't hear back from MAW. lol it's just that it takes time. But he said no more then 6 months and probably less- that is, if I get apporved(very uneasy about it).

 

[Loodlow]

Hi,
Junior has a lot in common with my Kaleah(wish child). We will be brining the same equipment as your wish child. We live in West Chester, Ohio and we were concerned about flying. Our MAW chapter is renting us a full sized handicapped van. We are a family of 6. They are also allowing us extra day or two for travel time. In the van the child can travel in their wheelchair, does his go into a full or part recline? If not contact his pt/ot therapist and they might be able to get a "loaner" for the trip. Our pt/ot at Cincinnati Childrens has been able to get us loaners for bathchairs and other devices at times.
I hope this is helpful.
Kim

Thanks Kim! I looked online for handicapped van rental today. Jr. can recline in his wheelchair, I just hate the idea of him riding in it so long!

 

[maroo]

Basically to be "approved" by MAW you just need your doctor's certification that you have a life threatening illness (and make sure he understands that...if he has been in practice a long time, then he may think MAW is still for children who are considered terminal or hospice eligible)...they have to sign off on that AND that you are in good health enough to travel.

Once the dr fills out the paperwork, then MAW gets going and each chapter is different in regards to how long it takes to be approved for a wish (this depends on their funding, how many wishes they have to grant before yours, if there are any "emergency" wishes to grant and basically just completing all of the stuff on their end.

The main hurdle, honestly, is going to be getting the doctor to say yes.

 

[Happy_dreams]

Basically to be "approved" by MAW you just need your doctor's certification that you have a life threatening illness (and make sure he understands that...if he has been in practice a long time, then he may think MAW is still for children who are considered terminal or hospice eligible)...they have to sign off on that AND that you are in good health enough to travel.

Once the dr fills out the paperwork, then MAW gets going and each chapter is different in regards to how long it takes to be approved for a wish (this depends on their funding, how many wishes they have to grant before yours, if there are any "emergency" wishes to grant and basically just completing all of the stuff on their end.

The main hurdle, honestly, is going to be getting the doctor to say yes.

Oh thank you! Yeah, I figured my obstacle would be his certification. I did read on the refferal form about "emergency" wishes. It sadend my heart that there exists such a thing.-becuase no child should die before their parents. I have patience and can handle waiting for wishes to be granted before me. In fact, I have a friend whose doctor certified her as having a life threatening illness just 2 weeks ago. I am sooo happy for her. I have oriented her and her mother about GKTW and the experience. They didnt even know GKTW existed. I live in a Spanish-speaking island and giving them the link to GKTW's doesnt help at all.- I study at a bilingual school and was taught English in infancy. I will keep you guys posted!

I have a frriend whose brother is 12 years old and was born with Hypoplastic Right Heart Syndrome. He has I think 3 or 4 surgeries from infancy to the age of 4. He now visists the cardiologist once a year. I told his brother(my friend) about make a wish but he resents it. And it's fine- I told them and did my part.

Nine days to go!

 

[Glo's wish]

That must be so exciting and overwhelming and impossible to conceal it!!!! Im soo happy!!!!!!!!!!!!!!!!!!!!!! lol about your talk of Disney! Dont mind them! Keep on talking!!!!!!!!
Good luck with everyone!

Yes it is very exciting although I was told it may be another 6 weeks before I hear anything more. I guess they have so many kids in Michigan waiting to go on their trips that we have to be patient. Thanks for listening and being excited with me!!!

Congratulations! The fun really begins now. You will probably have a million questions for them, and they may not have all the answers. Feel free to ask me anything about trip planning, the parks or GKTW.

Blessings

Bill

Thanks Bill! I think I have just shy of a million questions at this point. I'm trying (unsuccessfully!) to tame my excitement. We were told we could shoot for March for our trip, otherwise we may need to wait until Sept. or October to avoid the heat which would be undoable for Glo.