Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FIVE!!

[Emmaswishtrip]

Just wanted to say that we are back from Gavin's trip and it was amazing! We have been crazy busy though so I have not even thought about his trip report but plan to get to it soon! Hope everyone is doing well.

Can't wait to see your pictures!!

 

[maroo]

Lots of Big Gives posted! Come over and check them out! Only 3 weeks left!

awesome!! I know you guys are so excited!!!

packed, repacked and over packed.
we leave in the morning!!!!!

doubt much sleeping will be going on.....

I hope you guys have an amazing time!!

Welcome "back!"

I can't believe WE leave in less than a month! We are low on funds so I'm going to make E an autograph book with 4x6 index cards and some $1 photo album ("brag" books) from Target. I got some stickers but what characters I didn't find, I may try to run an index card thru the printer and see if I can put them on that way. I kind of wanted to go elaborate but you know, I don't even know if he's going to want to interact with the characters. This is going to save us time and $. I just hope the ink doesn't bleed thru the index cards...maybe I'll get a small clipboard just in case. I'm thinking about keeping the cards in binder clips until they are signed and then just slip them into the photo album as we go.

I really wanted to try to make the tie dye shirts! I was at Joann the other day and they didn't have any little white t shirts. It then hit me that E has a ton of Fruit of the Loom undershirts! DUH, Amy!!! My brain has been in a mushy state with all the sadness going on in the CHD world as well as losing the little ones on here. Our little friend, David, had a great weekend celebrating Christmas with his family. My prayer is that little stinker will be around for the real thing, too!! I so wish he could go to Disney. If any of you would like to send him and Abby a postcard while you're there, let me know and I'll PM you their address!!!!

Ethan got a postcard from THE WORLD yesterday!! He was SO excited!! It was from the Fab 5 and they were just congratulating him on a great school year and soccer season. His face was PRICELESS!! Thanks goes to our Fairy Godmailer on the disboards. She did awesome!

Well, I guess I need to get to planning! I have a "Disney box" full of stuff that I check on weekly just to make sure I still want it and to see if we need to add anything. I got a couple of inexpensive lanyards at Party City the other day for E to pin his buttons on. I hate the thought of poking holes in his t-shirts! Of course, I got Mickey and Toy Story ones and now he's knee-deep into Star Wars I've had a Buzz costume ready for him since last year and he's now declared he is going to be "Darth the Vader." Thankfully, I found a great costume at Goodwill. It, however, is missing the belt. "No problem," I thought. Well, he's now saying, "But Mommy, I need a belt to hold my lightsaber and I need gloves, too!" Yup. Don't know how I'm gonna manage that, but we'll figure it out!! I hope he shoots up another inch before we get to Disney so he can ride Star Tours!!!!!!!

I just wanted to end this by giving huge to everyone. There is so much going on in our lives- I hope that y'all are able to slow down and just savor the little stuff this weekend. For those of you who are on your magical vacation, I pray that it truly is the trip of a lifetime and that there is much pixiedust all around!

I hope he is tall enough for Star Tours! That was an intense ride!

Thanks for the welcome back!

I almost forgot..

I bought a couple of Brita personal water bottles (with filters) the other day for DH and I. (We will share with E when he's not drinking his juice, etc) I know that the water from drinking fountains probably has that FL sulphur taste, but what about the water from the counter service areas? My in-laws have asked me if they need to buy the bottles, too.

I hate to carry around things that we may not use, so any input would be great! I think I've asked this question before and got mixed responses (it may have been on a "tips" thread...I can't remember). Is the water at GKTW funky too?

Thank you!!!

I would definitely bring the water bottles - because those may be hard to find if you decide you need one while you are in Florida - they would probably have one at Walmart...but who knows!

I usually just buy water because it is just me and isn't that much (since I don't have kids, etc to buy for)...but if I had kiddos and could swing it, I would totally bring a cooler and store it at First Aid - At the MK, you get FREE bottled water at the Wish Lounge (near First Aid in the same building), but the rest of the parks don't have this perk (as far as I know)...

When we went to Disney 2 yrs ago for vacation we took a small cooler each day with bottled water. We went in May so it was really hot. I hate to buy water places since they charge so much. We just froze bottles the night before and it worked great all day!

The frozen bottle idea is such a GREAT idea!

I wanted to post this question for the experts I have never flown before and need some tips on the packing and how much luggage is allowed and do I need one of those luggage scales? I know our trip isn't until March but we have been looking at luggage whenever we go to town and online. Thanks everyone in advance. Love reading everyones PTR & TR and get celebrating with you.

Which airline are you flying? Are you flying internationally?

Southwest allows the first two bags per person for FREE...but not sure about the other airlines. Your MAW folks should be able to tell you if they are planning to pay for baggage fees or not and that may help you plan, too!

My daughter hasn't had deli meat since she started treatment (chance of contamination has made the risk too high for us) for leukemia two years ago and cannot have tea AT ALL while on treatment. She's going to the tea party at the Grand Floridian as her "special event" while we are there and they serve each girl tea and juice as well as ham and cheese rollups.

Have any of you ever made special menu requests and if so has it been an easy process? I know there is a number to call, but I wanted to be prepared if there's anything special I should say/do/need.

I would call the number AND tell them when you get there. Make sure they know WHY she can't eat deli meat so that they can make sure they don't accidently serve it. It sounds like it is going to be a great event!! They are very good about food allergy requests.

We just got back on Saturday and the Brita bottle was our savior! The water is terrible no matter where you get it! I would highly recommend bring one otherwise you are looking at atleast $3.00 a bottle for water. I found it a pain to carry our cooler around with the kids juices but you could always do that as well.

True! So true!

Just wanted to say that we are back from Gavin's trip and it was amazing! We have been crazy busy though so I have not even thought about his trip report but plan to get to it soon! Hope everyone is doing well.

I hope you guys do a trip report! I love seeing all the pictures and hearing the cool stories!

I shipped my box down today! There is a FedEx store across the street from Walmart, which I understand is only a few blocks from gktw!

Welcome back. My kids loved looking at your pictures and Facebook updates. We only have a week to go! I am packing up today, with Halloween and meetings I have a very busy week ahead of me. Thank goodness Walmart is nearby incase I forget something!

True, so true!

Can't wait to see your pictures!!

 

[nuts4wdw]

Just wanted to share. We just got the call from MAW, and the wish granters are coming to our house November 8th! So, tell me what to expect. Is there a MAW FAQ-type page anywhere. I am so excited for my little wishman, Prescott! Thanks everyone!

 

[NEmel]

Our wish granters came on Wednesday! Carter was so excited and then of course got shy! He made them both little bracelets and cards, they loved them. He told them the main reasons his wish is to do a "firework" Disney cruise is b/c it is way to expensive!!!! Also said he wanted to see Mickey, fireworks and eat cheese pizza. Only out of the mouths of babes!!! Now we will wait for the board to meet and approve his wish. I will post a pic with his wish granters on his pre trip report.

 

[AmberGreenawalt]

We started the wish granting process for our daughter Savannah in early June. She is 4 years old diagnosed with Mitochondrial Disease Complex I and Complex III. After months of waiting we received a letter from Make A Wish that read...

"Make A Wish of Central and Western NC has concluded that her [Savannah's] condition does not meet the medical qualifications for a wish. We regret that we are unable to fulfill a wish for him/her."

We are heartbroken for her.

I have posted more on her PTR. You are welcome to read more about this dishearting news HERE.

 

[kritter47]

Not that it will make you guys feel any better, but MaW does not actually make that decision themselves - there's a form filled out by the child's doctor that lays out the medical eligibility criteria (I've never seen one for more than a second or so, so I can't speak to exactly what's on it) and asks if they believe the child meets those conditions. No one employed in a chapter office is a medical person, so they don't have the qualifications on what is a life-threatening condition or not - that's why it's left up to the doctor.

 

[yeti5353]

We are back!!! it was all we had hoped for and more!!!

we are all exhausted and I will try to do a post trip report. we did get a bunch of pixie dust with Molly being the child at the beauty and the beast show to get the rose, a private meeting with stitch in a small lounge, and we were allowed into the cast members preview of the new fantasy land expansion and got to see the new little mermaid ride, and the beauty and the beast attraction and see Ariel in her grotto.


Deb

 

[Mom2mitokids]

Not that it will make you guys feel any better, but MaW does not actually make that decision themselves - there's a form filled out by the child's doctor that lays out the medical eligibility criteria (I've never seen one for more than a second or so, so I can't speak to exactly what's on it) and asks if they believe the child meets those conditions. No one employed in a chapter office is a medical person, so they don't have the qualifications on what is a life-threatening condition or not - that's why it's left up to the doctor.

unfortunately... MAW has the last say. I have 2 friends that were denied wish trip because of MAW Foundation. Both of them had doctors approvals. MAW is the one that said Mitochondrial Disease doesn't qualify. Ambers little girl Savannah is now the 3rd being denied. My other friends daughter is TPN dependent and already had a life threatening line infection. I am grateful for MAW and what they did for our family, but it also makes it hard for me to support them .... Sad.

 

[kalimom6]

I just joined this board, we leave Dec. 1, 2012 to go to Sea World and GKTW.
Anyway, I just wanted to ask the previous poster about MAW. Is there a state wish foundation/project that is not affiliated with MAW? We live in Montana and there is a MAW but I know a lot of people locally who have gotten their childs wish done through the Montana Hope Project (run by the state highway patrols). We didn't even consider MAW for our 5 year old because when she was around 2, her physical therapist told us about MHP. I know they have a wider spectrum of what they consider a child worthy of a wish.
I am surprised to read that a child on TPN and had infections got turned down. MAW has been contacting my friend every 6 months for about 2 years now to see if her daughter is well enough for her wish. She just recently was able to stop TPN but she had 2 years of nothing by mouth, many, many, hospital stays. She is 6 years old. They tell her that she will always qualify.

 

[kalimom6]

Now that I have already posted, I will introduce myself. Our daughter had prader-willi syndrome and is being granted a wish through the Montana Hope Project (run by our state highway patrols, only for MT residents). Her wish is to "ride in a BIG airplane and go see a BIG fish." So we are going to Sea World and GKTW.
We have 5 other children that have never flown. So we will have 6 kids on a new adventure. We do many road trips a year, some 9+ hours one way. I am stressing to say the least. From what I have read so far on here, I have found jackpot on information! I know I will have many questions but for know, I just wanted to introduce myself.
Oh, this is also MY first time flying commercially! Life flights don't count I guess So that ups the stress level, I do not know what to expect. My husband is a seasoned flyer though. Ack, 5 weeks!

 

[NEmel]

Here is Carter with his wish granters!

 

[ABBMommy]

Oh wow, our transportation to the airport will be here in 36 hours!!!! SO STINKING EXCITED!

 

[maroo]

Just wanted to share. We just got the call from MAW, and the wish granters are coming to our house November 8th! So, tell me what to expect. Is there a MAW FAQ-type page anywhere. I am so excited for my little wishman, Prescott! Thanks everyone!

That is much fun!!!

Take pics! And feel free to share them with us!

Our wish granters came on Wednesday! Carter was so excited and then of course got shy! He made them both little bracelets and cards, they loved them. He told them the main reasons his wish is to do a "firework" Disney cruise is b/c it is way to expensive!!!! Also said he wanted to see Mickey, fireworks and eat cheese pizza. Only out of the mouths of babes!!! Now we will wait for the board to meet and approve his wish. I will post a pic with his wish granters on his pre trip report.

That is so sweet that he made them bracelets and cards - how precious!!

that is so awesome!

 

[maroo]

I did not want to ignore these posts...

But I am going to tread very carefully because I am still (days later) very upset about this whole thing...

We started the wish granting process for our daughter Savannah in early June. She is 4 years old diagnosed with Mitochondrial Disease Complex I and Complex III. After months of waiting we received a letter from Make A Wish that read...

"Make A Wish of Central and Western NC has concluded that her [Savannah's] condition does not meet the medical qualifications for a wish. We regret that we are unable to fulfill a wish for him/her."

We are heartbroken for her.

I have posted more on her PTR. You are welcome to read more about this dishearting news HERE.

I will say that I am heartbroken, too. And that I have tried to get some more information about this which I will try to get to you off the boards.

Not that it will make you guys feel any better, but MaW does not actually make that decision themselves - there's a form filled out by the child's doctor that lays out the medical eligibility criteria (I've never seen one for more than a second or so, so I can't speak to exactly what's on it) and asks if they believe the child meets those conditions. No one employed in a chapter office is a medical person, so they don't have the qualifications on what is a life-threatening condition or not - that's why it's left up to the doctor.

In this case, they actually did.

They have a "medical committee" that makes these decisions and overrides the doctor's requests in some cases.

unfortunately... MAW has the last say. I have 2 friends that were denied wish trip because of MAW Foundation. Both of them had doctors approvals. MAW is the one that said Mitochondrial Disease doesn't qualify. Ambers little girl Savannah is now the 3rd being denied. My other friends daughter is TPN dependent and already had a life threatening line infection. I am grateful for MAW and what they did for our family, but it also makes it hard for me to support them .... Sad.

I keep deleting the rest of my comments. So we will just leave this here.......

 

[maroo]

We are back!!! it was all we had hoped for and more!!!

we are all exhausted and I will try to do a post trip report. we did get a bunch of pixie dust with Molly being the child at the beauty and the beast show to get the rose, a private meeting with stitch in a small lounge, and we were allowed into the cast members preview of the new fantasy land expansion and got to see the new little mermaid ride, and the beauty and the beast attraction and see Ariel in her grotto.


Deb

Awesome!!!!!!!

I am so excited about this!!

Can't wait for the TR!!!

I just joined this board, we leave Dec. 1, 2012 to go to Sea World and GKTW.
Anyway, I just wanted to ask the previous poster about MAW. Is there a state wish foundation/project that is not affiliated with MAW? We live in Montana and there is a MAW but I know a lot of people locally who have gotten their childs wish done through the Montana Hope Project (run by the state highway patrols). We didn't even consider MAW for our 5 year old because when she was around 2, her physical therapist told us about MHP. I know they have a wider spectrum of what they consider a child worthy of a wish.
I am surprised to read that a child on TPN and had infections got turned down. MAW has been contacting my friend every 6 months for about 2 years now to see if her daughter is well enough for her wish. She just recently was able to stop TPN but she had 2 years of nothing by mouth, many, many, hospital stays. She is 6 years old. They tell her that she will always qualify.

to the DIS!!

I responded to your PM (private message), but I will welcome you again here, too!

Glad you are here!

Make sure and check out the FAQ on page 1 of this thread (it is in the 2nd post).

Now that I have already posted, I will introduce myself. Our daughter had prader-willi syndrome and is being granted a wish through the Montana Hope Project (run by our state highway patrols, only for MT residents). Her wish is to "ride in a BIG airplane and go see a BIG fish." So we are going to Sea World and GKTW.
We have 5 other children that have never flown. So we will have 6 kids on a new adventure. We do many road trips a year, some 9+ hours one way. I am stressing to say the least. From what I have read so far on here, I have found jackpot on information! I know I will have many questions but for know, I just wanted to introduce myself.
Oh, this is also MY first time flying commercially! Life flights don't count I guess So that ups the stress level, I do not know what to expect. My husband is a seasoned flyer though. Ack, 5 weeks!

Life flights definitely don't count!

Although I think flying commercially will be a LOT less stressful! (Well...maybe not with 6 kids. )

5 weeks!! Woot woot!

Here is Carter with his wish granters!

so stinkin' cute!!

Oh wow, our transportation to the airport will be here in 36 hours!!!! SO STINKING EXCITED!

wow! So close!!!

 

[MomOfAnAngel]

We are home, the trip was amazing!! I promise to start a trip report soon, but in the meantime I put a link to a picture slideshow up on our pre trip report that kinda sums up our trip. More to come soon...

 

[Lilfoot93]

Just wanted to share. We just got the call from MAW, and the wish granters are coming to our house November 8th! So, tell me what to expect. Is there a MAW FAQ-type page anywhere. I am so excited for my little wishman, Prescott! Thanks everyone!

How exciting!! When the wish grantors came to our house they talked to Trevor for a few minutes by himself while my husband and I filled out paperwork. When talking with Trevor they asked him questions about favorite foods, color, sports etc... Then they asked what his wish was. They also asked for a backup wish just in case they could not fulfill the 1st one. Can't wait to hear what he wishes for!

I just joined this board, we leave Dec. 1, 2012 to go to Sea World and GKTW.
.

Welcome!! Can't wait to hear all about your trip!

Oh wow, our transportation to the airport will be here in 36 hours!!!! SO STINKING EXCITED!

Yay!! I am so excited for you guys! I hope you have a magical time and can't wait to hear all about it!

We are home, the trip was amazing!! I promise to start a trip report soon, but in the meantime I put a link to a picture slideshow up on our pre trip report that kinda sums up our trip. More to come soon...

LOVE the slideshow! Glad you had an amazing time!

Jackie

 

[Cassondra]

We just received the final details of our Make a Wish Disney Cruise. We are so excited. This will be our first family trip and we will be celebrating our youngest child's successful transplant and health. Our family consists of DH, DS 7 and DS 4 (our make a wish child.) I will be working on a thread to share his story. Has anyone done a make a wish cruise? It seems like there is so much to do I would love any ideas or suggestions on things that are a must. We will be sailing the Dream in Jan 2013! Thanks!

 

[sarsop524]

Three weeks from now we will be gktw!!! Does anyone know if they serve a Thanksgiving dinner on Thanksgiving?? I had another question, but forgot it!! I am sure I will be back

 

[NEmel]

We just received the final details of our Make a Wish Disney Cruise. We are so excited. This will be our first family trip and we will be celebrating our youngest child's successful transplant and health. Our family consists of DH, DS 7 and DS 4 (our make a wish child.) I will be working on a thread to share his story. Has anyone done a make a wish cruise? It seems like there is so much to do I would love any ideas or suggestions on things that are a must. We will be sailing the Dream in Jan 2013! Thanks!

My son Carter's wish is to go on a Disney cruise as well. We just met with the wish granters last week so not sure when we will get dates. Have you cruised before? We went last summer on Carnival and my boys loved it! I see that you are close to us, we are in NE. There are some great cruise ideas on the cruise board as well as cruisecritic. What ports are you going to? Do you have your cabin assignment yet? Keep us informed as to your planning as you will go way before us! Congrats.