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

[yeti5353]

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 dont know all the naswers but I have heard cpap machines have to be tested. pack stuff in batches of zip lock bags so they can be examined easily without opening the bag and ALLOW EXTRA TIME at security. I have heard many times that orlando is tough to get thru coming home.

 

[yeti5353]

[
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...[/QUOTE]

So very cool! take lots of photos! some of this stuff will be as important to remember as the wish. I plan to make a photo book as well as the family photo book so M can bring it with to the hospital etc. I will include the wish enhancement stuff as well

 

[yeti5353]

allears.net has lots of great disney advice too. here is a link to what to take in the park

http://allears.net/pl/tote.htm

 

[GavandGraciesMommy]

YAY!! So excited! We bought our Dining with Shamu tickets today

So with the packing thing.... I am taking an extra carryon for all of Gavin's stuff (nebulizer, albuterol, 9 meds, pullups, and wipes). I would ask about sending stuff ahead of time if any of your things can be. You might talk to the airline though, they may allow you to check more things possibly without charge if they are feeling generous.. I will cross my fingers for you.

 

[hanori]

Hi we are going to be at GKTW on Oct 23-29, Orion (wish boy) will be turning 5 while we are there, We are so excited and reading all these makes me even more excited.





http://www.disboards.com/showthread.php?p=46298056&posted=1#post46298056

 

[yeti5353]

Hi we are going to be at GKTW on Oct 23-29, Orion (wish boy) will be turning 5 while we are there, We are so excited and reading all these makes me even more excited.





http://www.disboards.com/showthread.php?p=46298056&posted=1#post46298056

welcome! we will be there part of that time!

we got a letter from GKTW today, so exciting to get something official!

 

[GavandGraciesMommy]

welcome! we will be there part of that time!

we got a letter from GKTW today, so exciting to get something official!

We got ours today too!!

 

[Miamakesawish]

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!

 

[yeti5353]

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!

Have a super time!

 

[maroo]

So I was wondering about buying the tickets in advance for Mickey's Christmas parade (can't think of the proper acronym at the moment ). If I'm going to need a specific date, do I need to figure that out asap? Do tickets sell out quickly for dates the closer you get to Christmas? The dates that I would be interested in for the parade are either Dec 16th or Dec 18th.

Another question, so if I'm interested in the Osborne lights, at Hollywood Studios, wondering your thoughts on planning this. YDD, Busypants will be about 2.5yrs old and would still need naps, more assuredly on certain days more than others, like when we're out later than the usual bedtime. So if we do the parade, we'll hang out at GKTW and she will have her nap before going to Disney and the parade (as mentioned by someone else). In order to see the Osborne lights I'm thinking we'll either spend the morning at GKTW or somewhere else like SeaWorld or Universal. Then she can nap while we drive over to Hollywood studios (or at GKTW). Just wondering if others think the kids 2.5yrs and 6.5yrs would enjoy puttering around Hollywood Studios while waiting for it to be dark enough for the Osborne lights. My initial thinking is that I wouldn't want to park hop from somewhere else, it just seems a bit challenging with what will possibly be two potentially cranky kids...thoughts?

Okaaaaayyy!!! Think I just answered my own question. There's Toy Story and Cars themed attractions there! Those are Chatterbox's 'want to see' things - yay!!

On a wish trip - I would WAIT until the week before or even a couple of days before - to purchase tickets. You are still considered "advanced" if you buy them just 2 days before the party and then you will have a better idea of the weather and the health of your kiddos.

DHS has a TON of things to do! I think you can definitely find many things to do - they will love the Toy Story ride - there are lots of great things and shows to see, etc.

And you will be "spending" one of your tickets to Disney - you only get three days worth?
Usually families pack a lot into those days? You could do AK in the morning and go to a show or two or something and then go to DHS? Or some other park that you only have a few things on your list for...??

We are fortunate enough to be in Florida right now, thanks to my BIL giving us a week at his timeshare. Today we spent at GKTW...VOLUNTEERING!! We had a great time. (Lisa's Wish Trip was October, 2011). All of my children worked in the Ice Cream Parlor, including our WISH Princess. DH and I worked the pool... it felt good to give back!

David, Rachel, Christian and Lisa​

Wow!! That's great!! That's definately something that we would like to do sometime in the future, if we ever had that opportunity. Must be so neat to experience it from both sides of the ice cream bar!!

I have another question about MVMCP. I'm getting set to possibly buy our tickets for MVMCP, but am nervous about spending the money. What if our trip gets cancelled, say if my daughter got sick? Is there a refund on the MVMCP tickets? I can't seem to find anything about refunds. And I'd like to buy them in advance to save a bit of money, but perhaps I should wait until say the week before or something.

There is no refund option... Although, if your Wish Trip gets canceled, I would have a serious conversation with someone at Disney and I think someone would have heart enough to refund you (or you could sell the tickets).

But I would not buy the tickets until 2 days before the party. You still get the benefit of buying them early for pricing and you will know the weather better and how well your kids are doing on the trip.

thanks for all the great wheel chair tips.

Make a wish is paying for one bag per person for us. I dont think we will check 3 bags going down but will we will have a large folding duffle in one suitcase for the way back.

we tye dyed mickey head shirts today. I will have a hard time letting them sit for a couple days!!! I really am anxious to see how they turned out.

post pics!!!!

Did any one need to add gas to there rental for the week ? Just looking at the budget ..

? I have heard them say to bring it back empty...usually you have to fill up a rental car, but I think MAW likes to cover the gas. But depending on the size of the vehicle, gas mileage, etc...I would budget some money for gas!

Please say a little prayer for us. Our wish kid has had a cold and last night he woke up because he was having trouble breathing and was having some "stuff" (don't want to disgust anyone) come up. We were able to get it under control with an albuterol treatment but he has to see his doctor today. They think it might be another round of pneumonia.

OOOH!! I wanna see pics and did you follow a particular tutorial? I kind of want to try although DH likely won't wear tye dye. My FIL will be all over it, however (60's kid!).

Thanks for your input Maroo. I think I am going back to my original plan of not going. I do think it would be too much for him, and we would see that the next day and that really would not be worth it.

Thank you to everyone for your prayers and concerns! It worked!! He does have bronchitis so he was placed on antibiotics and back on the albuteral treatments at least three times per day (more if we feel it is needed the doc said). They think he will be able to fight it off now that his heart is in better condition. Things like simple colds can turn scary for our kids but I am thinking we are going to be okay Thanks again everyone!

Lauren got a pretty nasty case of "deep" bronchitis last week, too - She is feeling MUCH better now, though!

I need to make sure my daughter has her bath chair, formula, oxygen, diapers and wipes...do you pack these things (minus the oxygen) in an extra suitcase. Or can you ship it to GKTW?

I would DEFINITELY have them set up O2 before you leave. And if you need it ON the plane, then call the airline, too - they usually have to clear this.

We rented a bath table thing the 2nd time we went to Disney and it was VERY nice and easy to do! MAW can set that up for you, too!

Formula - I would bring 2-3 days worth in case of something strange with the shipment - and have the rest shipped to GKTW. They are used to getting the shipments, so they will be great with it!

Diapers and wipes - We get at Walmart unless you need a certain kind. If you use special ones, then those can be shipped, too!

Is the home health agency you use in FL as well? If so, they might deliver those things for you. Then, you could just carry what you need for the flight (& maybe a lil extra, just in case of delays).

If not, then I would definitely contact your Wish chapter & see what they can go (GKTW, too).

Exactly!

We are in the same boat. We are getting o2 from our DME here at home and MAW is setting up o2 in the room, also we need a compressor and nebulizer. For the smaller things we are shipping a box of supplies ahead of time. Also we are going to ask our DME for formula to be shipped but if not it's going in our fedex box! We are going to pack enough in our bag for a 2 day supply (just in case!) Please let me know if you hear any other ideas!

Yes I was a little worried to say the least yesterday morning. Gavin was hospitalized 5 times for pnuemonia last year before they did the heart surgery so I am always scared it is coming back. Since his surgery he has only had it once and it was a couple months after surgery. The docs still hold out hope that if he is not pumping that extra "dirty" blood to the lungs we can avoid more pnuemonia. However, immune system= sucky! So yeah I am babbling but to say the least I was freaking out yesterday and just hoping he gets better quickly today. Thanks again for everyones thoughts. That is one thing I love about this place. It is the only time I dont feel alone with some of Gavin's "Stuff"

I am so glad you are encouraged by being here on the DIS! And the wish trippers thread!!

Is he a post Fontan also? That's what Chatterbox is. Never heard it called extra 'dirty' blood to the lungs (Chatterbox has unbalanced AVSD, lots of blood mixing), but it makes sense. I hope he does well over the next while. And I also agree about this place, I think it was one of my first observations. You know everyone on this thread has a solid a appreciation about the little things, and also has wonderful empathy. Both characteristics that I find to be quite lacking in many other areas, unfortunately.

heart hugs to you

So my planning mind makes me crazy sometimes and then I start to worry! So my kidlets are 4 and I'm thinking car seats and rental cars! Did you gate check your car seat? Did you get one from the rental company? We have so much equipment to lug (daughter has a trach) I can't picture carrying two huge car seats! Advise please!!!

Looks like you got lots of advice here!

I recommend an FAA approved car seat so she can be in that in the plane, if she needs it. You will have help from GKTW (a Greeter) that can help you with the bags.

DS will be almost 4 when we go to WDW. He will be riding in his Evenflo Maestro car seat on the plane. It's lightweight. If you don't have a lightweight seat, you can try the Cosco Scenera (providing it's not too small for your kids- my DS is on the small side for an almost 4 yr old..just at 30 lbs and about 39" tall.). It's lightweight and very inexpensive. You could either hook it to your stroller(s) with a d-ring or bungee it to a rolling luggage cart and make an impromptu stroller/stuff hauler.

I've never rented a seat but I've read stories about them being nasty and inadequate.

There is controversy over gate-checking/checking as luggage. I went by the guidelines on car-seat.org and do not check my DS's. There is a thread under the "Disney for Families" part of this board about this and someone posted yesterday that new guidelines say it's ok to check/gate check. What you decide to do is up to you. IF you do check it/gate check, get a bag for it and you can even wrap towels or bubble wrap or something around the seat itself before you bag it to make sure it's protected. I would inspect it like CRAZY once you land. Take the cover off and make sure the styrofoam isn't cracked, etc.

This is what was posted yesterday but some Car Seat Technicians commented saying that they still wouldn't trust their seat with baggage handlers, etc.

MACPS, the Manufacturers Alliance for Child Passenger Safety, recently made a statement about gate checking seat:

" Car Seats Gate-Checked or Checked as Luggage
Car seats are designed to withstand most motor vehicle crash forces. In general, the MACPS does not consider a gate-checked car seat or a car seat that is checked as luggage to be one that has experienced forces equivalent to a motor vehicle crash. Once the destination is reached, it is recommended to inspect the car seat to make sure no visual damage has occurred and all aspects of the car seat function properly. (August 2012) "

source: http://saferidenews.com/srndnn/LinkC...s=&tabid=352

Good luck!

With your daughter's special needs, do you think it would be possible to contact the airline ahead of time to see if you guys could get assistance getting thru the airport? You know, the golf cart thing? That way you wouldn't be hauling all that stuff yourselves. If you're not comfy doing that, I would definitely ask your Wish Granter(s) to see what they think.

Just a thought!

We have actually had lots of discussion regarding a car seat for our Wish Kid. We finally decided he needed a new one any way, so we got one that is FAA approved for use in flight. We will just have it all the way through our trip, and not need to worry about checking it or renting one. MAW had offered to rent us one when we got to Orlando, and provide us with a harness for the flight. We just figured this way would be easiest.

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...

We've arrived at GKTW and it's wonderful!

Off to IOA tomorrow and then back to enjoy the Christmas party. Looking forward to a wonderful week of memories and fun! Thank you again everyone for the advice and input. I feel so relaxed and stress free, our week is planned out, with lots of room for change as needed, and I am ready to enjoy!

Colin, who is not so much a Mickey fan, was overwhelmed with his surprises from GKTW when we arrived, and said over and over by bed time that his Mickey stuffed animal was his favorite ever!

Thanks,
Jennifer

 

[carebearkidney]

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.

 

[yeti5353]

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.

prayers for you!

 

[Lilfoot93]

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!

That is coming up fast! I can't wait to hear all about it!

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.

Praying for sweet Matthew.

Jackie

 

[michiml03]

I know I have asked this before and please forgive me but can someone verify the days and times of the parties at GKTW? I was browsing through the Village Guide and said that the parties were on different days then I was told. I'm just trying to get my plans done this week since we leave on 10/14 TIA

 

[GavandGraciesMommy]

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.

I am so sorry to hear this! Praying and hoping the best for you and your little one

 

[GavandGraciesMommy]

I know I have asked this before and please forgive me but can someone verify the days and times of the parties at GKTW? I was browsing through the Village Guide and said that the parties were on different days then I was told. I'm just trying to get my plans done this week since we leave on 10/14 TIA

This is what I have:
Sunday: AM- Scrapbooking, PM-Candyland Game
Monday: AM- Disney Character Photos; PM- Halloween Party
Tuesday: AM- Nick Characters; PM- Mayor Clayton's Birthday party
Wednesday: AM- Pony Rides; PM- Village Idol
Thursday: AM- Disney Characters; PM- Winter Wonderland
Friday: AM- Univeral Characters; PM- Tea Party and Princess and Pirate Party
Saturday: AM- Horse rides; PM- Pool Party

Hope this helps! It looks like we will be there at the same time We can't wait!

 

[Momtokcc]

Hi we are going to be at GKTW on Oct 23-29, Orion (wish boy) will be turning 5 while we are there, We are so excited and reading all these makes me even more excited.





http://www.disboards.com/showthread.php?p=46298056&posted=1#post46298056

We will be there for part of that time too!! It it sooooo close!!!

 

[KaylaM]

This is what I have:
Sunday: AM- Scrapbooking, PM-Candyland Game
Monday: AM- Disney Character Photos; PM- Halloween Party
Tuesday: AM- Nick Characters; PM- Mayor Clayton's Birthday party
Wednesday: AM- Pony Rides; PM- Village Idol
Thursday: AM- Disney Characters; PM- Winter Wonderland
Friday: AM- Univeral Characters; PM- Tea Party and Princess and Pirate Party
Saturday: AM- Horse rides; PM- Pool Party

Hope this helps! It looks like we will be there at the same time We can't wait!

Do you know if this is going to be the same schedule Nov 18-24? Or do you know where I can get the schedule for that week? We are going to be there then and I don't want to miss anything, especially Disney and Nick Characters.

Thank you so much.

 

[aym4Him]

Do you know if this is going to be the same schedule Nov 18-24? Or do you know where I can get the schedule for that week? We are going to be there then and I don't want to miss anything, especially Disney and Nick Characters.

Thank you so much.

I pretty sure it will be the same. I actually emailed GKTW and asked about it b/c I wanted to make sure we planned according to what we wanted to be at GKTW for. We are going the week before you .

If you want to be certain, shoot them an email.

 

[KaylaM]

I pretty sure it will be the same. I actually emailed GKTW and asked about it b/c I wanted to make sure we planned according to what we wanted to be at GKTW for. We are going the week before you .

If you want to be certain, shoot them an email.

Thank you... I sent them a message.