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

[KaylaM]

Having a fretful worry day today. M had a bad episode of pain last night and I am sure that set me off. dont know how I am going to manage that at the parks.

money- do I have enough?
weather and rain
leaving my mom alone for a week
staying well till we leave.
if I am in good enough shape to pull this off

just fretting....

I am so sorry to hear that. I know how it is to worry about a few of those things, especially keeping your child well to go. I am already so worried about that. You will be just fine and able to do it. Once you get on your way, you will be so grateful you are doing this for your child and have an amazing time. I always say, think positive and everything will be fine! I know, much harder to say than to do.

Do you have a friend of someone that can just check in on your mom from time to time while your gone? She is though just a phone call away too, but I am sure it would be nice to just not have to worry about her as you need this break too!

Hang in there!! Start making plans, looking into things to do, look at photos of other kids there to cheer you up knowing you are taking your child there and he will love it! That is what I am trying to do to overcome the worries.

 

[Abcam]

How to get equipment to GKTW..our DME is a local company so they say they can rent us a portable concentrator, but we only need oxygen at night and rather not have to worry about on the plane. I've read posts where they say GKTW is setting up the oxygen. Can anyone give me more info on this? What about bath chairs - my DD can't sit by herself and will need a bath chair...does GKTW have these, can you rent them? Also, will MAW cover the shipping cost to get other medical equipment to GKTW?

 

[Emmaswishtrip]

How to get equipment to GKTW..our DME is a local company so they say they can rent us a portable concentrator, but we only need oxygen at night and rather not have to worry about on the plane. I've read posts where they say GKTW is setting up the oxygen. Can anyone give me more info on this? What about bath chairs - my DD can't sit by herself and will need a bath chair...does GKTW have these, can you rent them? Also, will MAW cover the shipping cost to get other medical equipment to GKTW?

Our DME is letting us borrow a portable O2 for the airplane and daytime use. We only use O2 while sleeping. Otherwise MAW is getting scripts and working with a DME to have everything else delivered that we are not traveling with. I'm shipping an extra box of supplies down before we arrive just in case. We are paying for this shipment from our spending money.

Try to contact your MAW chapter and give a list of equipment needed. They should be used to all these requests!

 

[newdrama12]

Don't remember who asked and don't have the time right now to look. But for those that are staying at GKTW. If you have visitors that would like to join you for a meal, they can buy a meal coupon at the Front Desk for $5 a person. But got to finish packing for a small vacation to NC, just wanted to post the answer before I forget. I will be visiting one of my Wish Family friends for five days.

 

[sarsop524]

Don't remember who asked and don't have the time right now to look. But for those that are staying at GKTW. If you have visitors that would like to join you for a meal, they can buy a meal coupon at the Front Desk for $5 a person. But got to finish packing for a small vacation to NC, just wanted to post the answer before I forget. I will be visiting one of my Wish Family friends for five days.

Thank you for checking!!! I appreciate it. I looked through the guide for GKTW, but couldn't find the answer! Enjoy your vacation!

 

[DelanaAndKyra]

I was gone for about week now, just preoccupied and just came back to catch up, what alot of reading lol I love this place! there is so much information and people asking questions i never even would have thought of! This week I packed away all of our summer clothes. It make me so excited because next time they are out of the bag will to be packed for the trip!!! I was also very excited today when i seen that walmart had minnie mouse stuffed animals, not huge but not really tiny either. i figured it would be a great stocking stuffer for her. I have been doing as much as i can to get all we need for our trip now and ill wrap it up as gifts for christmas. So far i have aloe vera for me and sunscreen. Are there any items that were must have items while you were on your trip or anything you wish you had packed?

 

[yeti5353]

Totally cannot believe in two weeks we will be at GKTW!!!


here are the photos of our mickey tye dye shirts. I followed the directions from disney dreamer. see our PTR for the link.

big sis with her shirt

and the other two shirts

 

[yeti5353]

seriously odd questions I seem to need answers to:

what kind of bag hangs best from a wheelchair?

do we need mosquito spray?

Can you bring pool toys to the pool at GKTW

is there a place to change by the pool or do you have to go back to your villa?

many thanks from the over excited DEB!!!

 

[Lilfoot93]

Totally cannot believe in two weeks we will be at GKTW!!!


here are the photos of our mickey tye dye shirts. I followed the directions from disney dreamer. see our PTR for the link.

big sis with her shirt

and the other two shirts

What cute shirts!! I am going to have to try that out. I can't wait to hear all about your trip!

Jackie

 

[Owensheart]

WIll you all stop and say a prayer for sweet Mia's family. They left for her Make A Wish trip on Tuesday. After a tragic turn of events, her family has to say goodbye forever. Please keep their entire family in your thoughts and prayers. My heart is broken for this family.

We leave on Tuesday!! We can hardly wait. This is going to be so magical! A huge thank you to everyone and their trip reports. It has been so helpful!

 

[blessedmom4]

cool on the give back to GKTW. doubt I can ever do that but want to look into doing something for them.

It is great to see a list where people get it, and understand too our fears of not making this trip happen.

deb

I know many wish families will never make it back to Florida or GKTW, which is one reason we feel so blessed to live only 8 hours away by car (well, more with potty breaks, but still). How can you still give back? Tell people about GKTW, write a TR to show how amazing it is, volunteer locally to help another charity and there are so many other ways besides monetary you can give. During the summer I spoke about GKTW and our experience at a local hotel whose chain raises money for GKTW. I am happy to say that the hotel fundraiser I spoke at raised more money than they ever have and then to find out they raised the most money in the nation this year, well I felt as if I had really let our trip and experiences help others.

I FULLY understand the fear of the trip NOT happening,

Last week we got some really cool news for Braden. He was chosen by Riley Hospital (his "home" hospital here in Indy), as a Coin Toss Kid for an upcoming Indianapolis Colts vs. Green Bay Packers game at Lucas Oil Stadium! They are providing tickets for our family for the game, a limo to and from the game, Braden and I get to go down on the field before the game, and then he gets to be with the captains from both teams and the refs for the coin toss! He will also be featured in the program for that days game! The game also happens to be exactly one week before we leave on his wish trip!!!

Tonight was also a great night... it was Braden's Wish Party! His party was held at Coldstone Creamery, and he had a blast! We have updated his PTR with pics!!! Just over two weeks to go...

That is amazing! Please post pics when you have time!

Y'all...Please pray for David. He's not doing well at all and is back in the ICU. Last week, the hope was that he could come home for a while but I'm not sure if he'll pull through...he's really struggling. (Can't remember where I shared about him but they found out he's not a candidate for a heart transplant earlier this week). http://www.caringbridge.org/visit/babyhood

Please pray and share with everyone you know. Let's storm the gates of Heaven with this family as they are on their knees for their little warrior.

Thank you so much.

Bleargh. I need a hug or twenty.

Prayers said!

Speaking of packing - I am most nervous about packing all of the medical stuff and dealing with the airport. I haven't flown since probably like the late 90's and had no medical stuff to deal with then and only one child. Cade's formula is powder, he takes 9 meds that are liquid, 7 that are not liquid - one of those is just his emergency solu-cortef which is shot (not in a pen device so we have the needles and stuff) but we have to carry that everywhere). We have his feeding supplies - he uses a feeding pump at night, but we do boluses during the day too. Do they consider pullup type things and booster pads medical (he's 10)? I always put the containers I use to premix his formula in with that bag too, but can I do that? I'll have his extra mickey button and stuff to replace it w/ in there too and a cpap machine. I just don't know how all of it is going to work. They are supposed to have an IV pole at GKTW for us b/c his feeding pump won't work without one. I don't want to be stressing about this, but I am....help!

I know you have had great responses, I just want to say I had the same fears and would still again if we flew...because I don't like all of the hub-bub, even though it is necessary. We had two medical suitcases, a c-pap machine, Lisa's medical drink (that was fun), her wheelchair and leg brace, LOTS of meds (liquid, pills, injectables)...we were scrutinized head to toe (literally), Lisa had special searches, her c-pap and drink had to be tested and while I was stressed to the max, it really wasn't a big deal...except for regrouping and again I was stressed so I understand, but ALL of the medical "stuff" will get through with NO problems!

I know I've been MIA for a while now - we have been having some health issues with Matthew. They are testing for leukemia and just this weekend he's been complaining of tummy pain/tenderness. He's on a feeding tube, and it was pulled out while he was playing with his brother last week. His white count is very low and he is neutropenic at the moment also - so I thought maybe his inner stomach lining was irritated and it would just take time to heal. Well, now he is bleeding (no granulation tissue though) and started running a 102 fever tonight. I'm calling GI in the morning. It's just been crazy! But I promise I'm not gone... well, maybe mentally. But I'll be back - just haven't had to time to get on as much with my baby under the weather.

Huge prayers!!!

I know we are still a ways out compared to some of you...but it was an exciting day in our house today! Our wish coordinator sent us a countdown calendar that the girls can put stickers on, and it began today! When the calendars arrived it seemed so dar off, but now we are only a month and a half away!!

My mom and her husband just made reservations to stay in Kississmee for three nights while we are down there...I know I have read this before but I am too lazy to search tonight. It does say that guests may purchase meals at GKTW, correct??

Happy travels to all of you leaving soon!

Yea for Pixie Dust! Not only can your guests eat for $5, they can have ice cream with you as well and enjoy all of the activities and the parties.

That is so awesome Judy!!!!!

Once our little ones get bigger we will be going back to volunteer too!!!!

It was amazing Tim and we were SOOOO Happy they didn't hold Lisa to the minimum age of volunteering, since she was the wish child!

You will LOVE IT!

Totally cannot believe in two weeks we will be at GKTW!!!


here are the photos of our mickey tye dye shirts. I followed the directions from disney dreamer. see our PTR for the link.

big sis with her shirt

and the other two shirts

LOVE the shirts! Great job!!!

seriously odd questions I seem to need answers to:

what kind of bag hangs best from a wheelchair?
I like one with a long adjustable strap I can make NOT hit the wheels, big enough to hold things, but not so big you bang in to it every time you walk. I also like a place for Lisa to hang her drink on her armrest, we have used a variety of devices for that through the years.
do we need mosquito spray?
We didn't.
Can you bring pool toys to the pool at GKTW
Yes, it is a BIG pool, and lots of fun.
is there a place to change by the pool or do you have to go back to your villa?

many thanks from the over excited DEB!!!

You SHOULD be excited! I am for you! We volunteered at the Park of Dreams and I can say there is a bathroom you could change in as well as lockers to store things in WITH keys, just get them from the pool attendant. There are also W/C that can be rolled in to the pool (NOT the water garden though). There are also PLENTY of towels at the pool and emergency phones just in case. There is also a smaller pool; however, we never played there so I can't advise on that one.

WIll you all stop and say a prayer for sweet Mia's family. They left for her Make A Wish trip on Tuesday. After a tragic turn of events, her family has to say goodbye forever. Please keep their entire family in your thoughts and prayers. My heart is broken for this family.

Oh Andrea, I don't know what happened but that just breaks my heart and makes me cry. Prayers lifted!

 

[blessedmom4]

SO many have their trips coming up VERY soon. We were leaving in a week ourselves last year at this time and I have to say it was MAGICAL (well, not all of it, it IS real life). Remember there will be some trials, as there are in your daily lives, but they seem much easer to deal with in Florida...they really do! Take time to enjoy and just EXPERIENCE the trip. Let the pixie Dust find you and savor the little moments as much as the big. Spend time at GKTW, the parks will always be there. Don't get caught up in trying to do it all. Take time to rest, enjoy the front porch of your villa. Have fun at the parties! Call for a FREE late night pizza (or three, lol. I personally LOVED the veggie pizza and Yes, I eat meat). Have an ice cream after breakfast because you can! (Make it AFTER breakfast because breakfast is YUMMY)! Talk to some of the volunteers and staff. EXPERIENCE the chapel, very healing! Go INSIDE of Mayor Clayton's house. Let a bunny tuck you into bed..even the adults! It is ALL GOOD! It is a WISH TRIP!

I did another few updates on our TR if you would like to read more magic...
If you are new to our TR, I recommend going to the Table of Contents on page 1. You will miss some things, but it will help you wade through the length of our TR.

 

[blessedmom4]

WIll you all stop and say a prayer for sweet Mia's family. They left for her Make A Wish trip on Tuesday. After a tragic turn of events, her family has to say goodbye forever. Please keep their entire family in your thoughts and prayers. My heart is broken for this family.

Andrea, I just can't hardly think straight since I read this. My heartfelt prayers are for her parents and family. It is my worst nightmare...

 

[Momtokcc]

seriously odd questions I seem to need answers to:

what kind of bag hangs best from a wheelchair?

many thanks from the over excited DEB!!!

Since I don't know how to multiquote I just wanted to say - I can't believe that we too will be at GKTW in 2 weeks as well. I love the way your Mickey tye dye shirts turned out...I love them!!!

As far as what kind of bag to hang on the back of a wheelchair, I would have to say it just depends on the chair. Cade's chair is superlightweight - lwhich is great for him so that if he feels well he can self propel. It came with a bag that we can hang on the back, but we have to be careful about how much weight we put in it. My sister is actually making him a small Lightning McQueen bag to hang on the back of it.

 

[Lilfoot93]

WIll you all stop and say a prayer for sweet Mia's family. They left for her Make A Wish trip on Tuesday. After a tragic turn of events, her family has to say goodbye forever. Please keep their entire family in your thoughts and prayers. My heart is broken for this family.

My heart is just breaking. Prayers being sent.

Jackie

 

[Momtokcc]

WIll you all stop and say a prayer for sweet Mia's family. They left for her Make A Wish trip on Tuesday. After a tragic turn of events, her family has to say goodbye forever. Please keep their entire family in your thoughts and prayers. My heart is broken for this family.

Prayers being said - it makes me so sad to hear about this.

 

[onceagain1]

WIll you all stop and say a prayer for sweet Mia's family. They left for her Make A Wish trip on Tuesday. After a tragic turn of events, her family has to say goodbye forever. Please keep their entire family in your thoughts and prayers. My heart is broken for this family.

Oh no that is so terrible, I don't know what happened either, but my eyes are full of tears, and my heart full of sorrow

Since I don't know how to multiquote I just wanted to say - I can't believe that we too will be at GKTW in 2 weeks as well. I love the way your Mickey tye dye shirts turned out...I love them!!!

As far as what kind of bag to hang on the back of a wheelchair, I would have to say it just depends on the chair. Cade's chair is superlightweight - lwhich is great for him so that if he feels well he can self propel. It came with a bag that we can hang on the back, but we have to be careful about how much weight we put in it. My sister is actually making him a small Lightning McQueen bag to hang on the back of it.

Finally, I get to help someone else out. If you want to multi-quote, click the quote looking icon at the bottom right (middle icon) of each post, click it for as many different posts as you want to quote. Then when you're done, click the Reply icon button on the bottom left of the last posts. That should work, it's what I do

 

[KaylaM]

WIll you all stop and say a prayer for sweet Mia's family. They left for her Make A Wish trip on Tuesday. After a tragic turn of events, her family has to say goodbye forever. Please keep their entire family in your thoughts and prayers. My heart is broken for this family.

So sad! My heart breaks for them.. Prayers and thoughts to them!

 

[KaylaM]

seriously odd questions I seem to need answers to:

what kind of bag hangs best from a wheelchair?

do we need mosquito spray?

Can you bring pool toys to the pool at GKTW

is there a place to change by the pool or do you have to go back to your villa?

many thanks from the over excited DEB!!!

Not at all... We all have questions like these that we need answers to. Some of these I would like to know as well.

In regards to the bag... we have always used regular backpacks, but those made it a tad difficult to push sometimes as my feet would hit it. I love using messenger bags as it fits perfect, high enough up, and lots of room still. They have some really cute ones for kids. Good luck!

 

[KaylaM]

A few questions...

1. How do your kiddos adjust to the time difference? We will be traveling from California.

2. My daughter is g-tube fed only, but always seems interested in food when I am eating, and I used to give her a taste here and there, but now she can't at all have a taste due to her condition. How do you handle eating in front of your children? Here at home, I can separate myself and eat while she is doing her own thing. We don't eat out much mainly because of that. She always loved having a taste of ice cream, but that is one of the worse things she can have now. What is it like to go to GKTW having a child that can't eat what they have and what all the other kids are eating, etc.

3. How does the transportation work from GKTW to parks, and how often does it run?

Thank you all.

Michelle