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

[Thumper321]

I've got a quick question about flying with liquids. We are packing Aidan's formula and medical supplies in their own bag. But I'm wondering about packing a drink for Aidan in flight. He has to have thickened liquids, so he won't be able to get anything on the plane. Will they let me take a drink bottle full of thickened Gatorade? Is that considered a medical liquid?

 

[llurgy]

I've got a quick question about flying with liquids. We are packing Aidan's formula and medical supplies in their own bag. But I'm wondering about packing a drink for Aidan in flight. He has to have thickened liquids, so he won't be able to get anything on the plane. Will they let me take a drink bottle full of thickened Gatorade? Is that considered a medical liquid?

I would phone the airlines and ask what you need to do to enable flying with his thickened liquid.
It may necessitate a script from the doctor. They may require that you take the pre-manufactured/unopened nectar so that you have to mix it with a drink once you are on board.
I doubt that they would just let you take pre-mixed thickened drink on board without you having some proof that it is a medical necessity.

Mandy

 

[casper_jj11]

I'd call the airline or airport to see but honestly, I seriously doubt it. For us, medical liquids are by prescription only and other items such as liquid tylenol must be in the proper size to be carried on. You could try and get a letter from his doctor... this could work. Is it possible to buy gatorade after security and just bring the thickening agent with you to thicken it while waiting to board? DS was just over one last time we flew and he wasn't on formula but needed milk. I had to bring his sippy cup empty and buy milk after going through the security clearance.

 

[maroo]

I would definitely contact the airline or the TSA to ask any airline questions - especially if you have not flown since the incident at Christmas - I figure they are bit more careful after that incident.

 

[Wee Annie]

I've got a quick question about flying with liquids. We are packing Aidan's formula and medical supplies in their own bag. But I'm wondering about packing a drink for Aidan in flight. He has to have thickened liquids, so he won't be able to get anything on the plane. Will they let me take a drink bottle full of thickened Gatorade? Is that considered a medical liquid?

We have brought non-script "medical" liquids with us. I just made sure that I had something written from Elke's drs to prove that it was medically necessary. And actually, last I checked, even OTC medical liquids were allowed in greater than 3 oz, as long as they are medically necessary. I have always traveled with tylenol, Triaminic, etc in larger sizes, and just have put them in their own baggy and declared them as medical liquids, and had no problem. That being said, things may have changed recently, so do get a dr's note.

We traveled with Surgilast gel (and extra g-tube supplies) last November in my carry on just in case her G-tube came out and I had to do a mid-air change (the drs are paranoid, and said we should always be prepared just in case).

Ann

 

[Thumper321]

We traveled with Surgilast gel (and extra g-tube supplies) last November in my carry on just in case her G-tube came out and I had to do a mid-air change (the drs are paranoid, and said we should always be prepared just in case).

Ann

I'm glad you said this! I didn't even think about taking an extra g-tube for Aidan, but I guess I need to.

Thanks everybody for the insight. Our thickener is Simply Thick, and it comes in a large, 64 oz. bottle with a pump. However, it also comes in packets; our home health supplier just doesn't provide them. I'm going to see about buying individual packets for the trip, because I don't really want to put the Simply Thick in our checked luggage, and I'm sure they won't let me take a 64 oz. bottle of gel on the plane. Hopefully with a doctor's note, they'll let me take the packets in our medical carry-on.

 

[momma_mouse]

Yeah yeah I know I said I was not goign to be back on but well...the Dis is like crack!

Anyway, help me finish packing. What are things I will need that I probably forgot? Things you wouldn't think of packing? Things I might need extra of?

 

[maroo]

ponchos?

medicines?

money? Driver's license? confirmation numbers?

Oh...the list of what I would forget...is endless!

 

[Momofwishkid]

Yeah yeah I know I said I was not goign to be back on but well...the Dis is like crack!

Anyway, help me finish packing. What are things I will need that I probably forgot? Things you wouldn't think of packing? Things I might need extra of?

Glow bracelets, ziplock bags (for phone,camera) on those wet rides, water proof disposable camera.
Your going to have so much fun and remember there's a Wal Mart close if you do forget anything.

 

[Thumper321]

Camera, memory card, batteries or charger

 

[thatkid]

bring ponchos for sure! we ended up spending 50.00 on them in disney, not the best souvenir

 

[cantwaittoseemickey]

I am not ready to contact our wish people or hhc just yet because quite frankly I want this trip to happen and I NEED it to happen so Im not giving up just yet.

So does anyone know how we would get the medical equipment back home from GKTW if we need to cancel the trip before we get to go if the equipment is already there? Is it at our expense?

 

[twinmum]

Alison, its nice to meet someone from home. We aren't even close to deciding yet where we'll stay but its so nice to get different viewpoints. DH got home from the U.S. last night and I mentioned my discussions with the wish coordinator ... he's actually open to doing the land/sea option which I really didn't think we'd do. We have so many decisions to make. I'm looking forward to getting the travel package from the foundation. Which organization did Mark get his wish through? How did you handle extending the trip? We really want to extend it by 4 or 5 days but it sounds like its going to be complicationed.

Same question for you Shannon. You mentioned you're staying for awhile later. I meant to ask how you're managing the flights and rental car.

I had been thinking that extending the trip should't be too hard but there are so many things I hadn't thought of.

Mark's trip was granted by Starlight Starbright Foundation of Canada. It was very easy to extend our trip, but each wish granting organization is different. We just made our own hotel reservations, were given the option of extending the car or returning it (we returned it because we stayed on property...rental was paid out of pocket from our expense cheque anyway).

Keep the questions coming!

 

[Thumper321]

Does anybody know where I can get park maps before we actually get to the parks? I ordered the free ones from the Disney site, but they don't include everything?? Or is anybody going to Orlando before we are and willing to mail me maps? Thanks!

 

[maroo]

I am not ready to contact our wish people or hhc just yet because quite frankly I want this trip to happen and I NEED it to happen so Im not giving up just yet.

So does anyone know how we would get the medical equipment back home from GKTW if we need to cancel the trip before we get to go if the equipment is already there? Is it at our expense?

Oh gosh, I hope you guys don't have to move it. But if you do, they will help you take care of any of this stuff that needs to be moved around.

You can call GKTW and they can give you information directly - but knowing GKTW - they will take care of you guys and ship anything to you guys that they need to.

Hang in there.

Does anybody know where I can get park maps before we actually get to the parks? I ordered the free ones from the Disney site, but they don't include everything?? Or is anybody going to Orlando before we are and willing to mail me maps? Thanks!

Have you received the Disney maps? They should be the complete map?

I won't be there till the week after you guys leave.

 

[LindaBabe]

I'm here now, Thumper and will collect maps for you today. Pm me your snail addy.

 

[pnutallergymom]

I just wanted to share a little tip that worked really well for me the first time we took the kids to Disney. I didn't do it last year when we went, and I kind of regretted it, but my mom was with us so she was a HUGE help to me so it wasn't such a big deal.

As you know, I have the 4 kids...well, 5 if you coun't my husband!!

He will yell at us to know end to "Hurry Up" when we are trying to get out of the house. Needless to say, I have myself and 4 kids up, fed, dressed, teeth brushed, hair combed, and buckled waiting in the car for HIM everytime!!

So, he is NOT helpful at all. What I did that first trip, since the kids were alot younger and Brigitte had just had her first 3 surgeries, was to put an outfit for each kid in a ziploc bag. It had a shirt, shorts, and underwear. I wrote their name on it with a Sharpie. All they had to do was grab their own bag and get themselves dressed, while I got Brigge together. We still were wating for DH.

It made it so much easier to pack, and get everyone together in the morning. I also got a plastic shoe organizer at the dollar store and hung it on the bathroom door. Labeled a spot for each kid, and in it, put their toothbrush and toothpaste, and hairbrush....and hair ties for Brenna!

Doing this with the ziploc bags made for a ton of room in the suitcase. I put all 4 kids things in one large suitcase. Then had mine and Bryans in another, and just one more for Brigitte's supplies, which we carried on. I would often throw in a load of laundry while we were sitting at the pool. I hate to come home to laundry, but more so, hate overpacking. You all will have a washer and dryer in your villa. Take advantage of it. With kids like ours and all of their medical supplies, we have enough extras to bring. Don't bring tons of clothes. You can toss your laundry in the wash when you go to bed, and then throw it in the dryer when you get up in the morning. Trust me, it will make a world of difference. Also, with the extra baggage fees that airlines are charging, it will save you some money for extras!!

Just my two cents!!

 

[cantwaittoseemickey]

Just a question. Since Ty is the only one that wll get a Make a Wish shirt (I have seen families where them) where do the other family members get them? I was hoping we would each get one or at least Sierra and Ty but ours said nope its just him any ideas??

 

[yinyanggirls]

So, he is NOT helpful at all. What I did that first trip, since the kids were alot younger and Brigitte had just had her first 3 surgeries, was to put an outfit for each kid in a ziploc bag. It had a shirt, shorts, and underwear. I wrote their name on it with a Sharpie. All they had to do was grab their own bag and get themselves dressed, while I got Brigge together. We still were wating for DH.

I hear you! I may not be in the car waiting for DH, but I am ALWAYS the one to get all three of us girls ready in the same time it takes him to get himself ready!
I think the packing tip is a fabulous one! I've also read about people who use tape or rubber bands to bundle each day's clothes.

Just a question. Since Ty is the only one that wll get a Make a Wish shirt (I have seen families where them) where do the other family members get them? I was hoping we would each get one or at least Sierra and Ty but ours said nope its just him any ideas??

Would they let you buy them? Is it due to cost or is supposed to make the wish kid stand out in the crowd?

 

[dmbfan]

Just a question. Since Ty is the only one that wll get a Make a Wish shirt (I have seen families where them) where do the other family members get them? I was hoping we would each get one or at least Sierra and Ty but ours said nope its just him any ideas??

We bought Jake one and the buttons, as our chapter did not give either of these things to the wish child or family. I actually found the wish buttons to be a huge help, the rude stares of others were cut down right away as soon as the saw the MAW button. I think it was a total of $15.00 for one kids tee shirt and 8 MAW buttons.