Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[crashbb]

A bag of medical supplies should be free on the plane - the baggage fee is waived and it shouldn't count in your allowance. It has to be a bag of supplies though (not a few supplies mixed in with a bunch of clothes) - I have heard of some airlines checking to make sure it is supplies.

 

[dmbfan]

Christine, is your company shipping your TPN directly to GKTW??
I was wondering the same thing about shipping our supplies down. But I don't think you should have to pay for an extra bag on the plane if it is just full of medical supplies. I'm pretty sure that medical supplies are free. You may want to check into that with your airline.

Yes they are shipping his IV fluids and TPN down there for us. Today he starts his TPN for 18 hours now... I am shocked you have to take that yourself, is your TPN is on bag, and than you pull the tab and mix all together?

So I was going to ship a box of some formula and the rest medical supplies. We are flying Delta, I will have to look and see.

Thanks girls

 

[ndloewen]

Yes they are shipping his IV fluids and TPN down there for us. Today he starts his TPN for 18 hours now... I am shocked you have to take that yourself, is your TPN is on bag, and than you pull the tab and mix all together?

So I was going to ship a box of some formula and the rest medical supplies. We are flying Delta, I will have to look and see.

Thanks girls

Yep, it's going to be a pain to drag it all along and keep it all cold. And yes, it's in the bag with the tab to mix it all together. Nice that Jake will get 6 hours off. We are at our max of 4 hours off. It will make Disney tricky, being hooked to the pump most of the day, with those huge TPN bags, but it can be done!!

 

[maroo]

Maroo, dd's love the video of Laurens Wish Trip - it's been great to show them GKTW. They were a bit worried about the dinosaur and Lauren being on the train tracks.

Aw! I am so glad that she liked it. Yeah...we were playing on the train tracks. But I made sure that the train wasn't turned on! But make sure your sweet DD knows that she can't really play on the tracks!

The dino is fairly scary, honestly. And there is another one that will scare ya, too. They will spit on ya and stuff!

Has anyone shipped down to GKTW a box of medical supply before they got there? I know our HHC company will be sending all of his TPN and IV meds, but I was thinking of shipping down a box of items I will need, such as dressing kits, gauze, IV supplies and his diapers and so on.

I want to really limit what I travel with on the plan, and just with the supplies alone would be an extra bag, therefore an extra cost. I will be cheaper for me to mail it down rather than taking it on the plane.

Any ideas?

You can ship to GKTW if that would be easier for you. Or you can bring along, if that makes you feel better.

As others have said, your airline should allow a bag of medications/supplies for free.

Yep, it's going to be a pain to drag it all along and keep it all cold. And yes, it's in the bag with the tab to mix it all together. Nice that Jake will get 6 hours off. We are at our max of 4 hours off. It will make Disney tricky, being hooked to the pump most of the day, with those huge TPN bags, but it can be done!!

I am so glad you are getting 4 hours off!!!

I am interested to know how that works...with the TPN going to the parks. Do you have a stroller/wc for him? Can you just hook it on something?

Are you aware of the Disabilities thread that has some info about that on these boards?

I wish I could travel with you to help with all of that stuff!! You will have someone from GKTW that will meet you to help with your baggage, though.

 

[ndloewen]

I am so glad you are getting 4 hours off!!!

I am interested to know how that works...with the TPN going to the parks. Do you have a stroller/wc for him? Can you just hook it on something?

Are you aware of the Disabilities thread that has some info about that on these boards?

I wish I could travel with you to help with all of that stuff!! You will have someone from GKTW that will meet you to help with your baggage, though.

Yes, we will use the stroller for him, and we will get the stamp on our GAC to use our stroller as a wheelchair. We have a portable pump, so I put the pump and bag of TPN in a backpack when we go out. I've found it works pretty good that way and I don't have to actually hang the bag. He is also hooked up to a feeding pump during that time as well, although the feeds are so minimal, I am going to see if my doc is ok with just tube feeding overnight while we are there. That way we only have 1 pump to drag around the parks.

I need to check out the Disabilities thread. I'm mostly worried about the flights, but it's good to know that someone will be there to help with bags, as with all the TPN and supplies, we will have a TON!

 

[maroo]

Yes, we will use the stroller for him, and we will get the stamp on our GAC to use our stroller as a wheelchair. We have a portable pump, so I put the pump and bag of TPN in a backpack when we go out. I've found it works pretty good that way and I don't have to actually hang the bag. He is also hooked up to a feeding pump during that time as well, although the feeds are so minimal, I am going to see if my doc is ok with just tube feeding overnight while we are there. That way we only have 1 pump to drag around the parks.

I need to check out the Disabilities thread. I'm mostly worried about the flights, but it's good to know that someone will be there to help with bags, as with all the TPN and supplies, we will have a TON!

I actually looked on the disabilities thread and I didnt' find ANYTHING on TPN stuff...?? I thought I saw something on that? But I can't seem to find it.

It sounds like you have it under control, though!

I am so excited for you guys! You are going to love your trip so much!!

 

[LindaBabe]

If you don't have to feed continuously, the first aid centers at the parks have fridge's and also a pole to hang your bag on, should you need to go that route.

 

[dmbfan]

Totally odd question, but has anyone used the new double strollers at the parks? I want to bring ours, however, not sure I want to pay extra to take it on the plane with us. I know they asked us if were going to need a stroller and I said yes the double one. Than I saw that they have new ones now, that look much nicer, but my concern is that I am not sure if there is any place to hang Jake's TPN/IV fluids bag when he needs to rest.

Has anyone used the new ones and are the eaiser to push and are they worth it? I know weird question...

 

[alizesmom]

Ciara has some behavioral issues most important of which is punching herself in the face when in distress or angry. Sometimes we have had to resort to using no-nos (elbow splints) to keep her from bloodying her face. Am I going to get in trouble if I have to use these at WDW? Karen

 

[macntosh]

Totally odd question, but has anyone used the new double strollers at the parks? I want to bring ours, however, not sure I want to pay extra to take it on the plane with us. I know they asked us if were going to need a stroller and I said yes the double one. Than I saw that they have new ones now, that look much nicer, but my concern is that I am not sure if there is any place to hang Jake's TPN/IV fluids bag when he needs to rest.

Has anyone used the new ones and are the eaiser to push and are they worth it? I know weird question...

We went to baby's R us and got these little stroller clips that we hook onto the handle to hang Aidan's feed and then the pump just rests on the canopy. Go check out baby's r us or walmart and look for "stroller clips". Ours were red and yellow in color, plastic and like two for $5 or something. We use them all the time and put shopping bags on them when not in use for Aidan.

We will be using a double stroller at the parks for Aidan and then if Mya get's tired from walking, she can ride.

 

[maroo]

Ciara has some behavioral issues most important of which is punching herself in the face when in distress or angry. Sometimes we have had to resort to using no-nos (elbow splints) to keep her from bloodying her face. Am I going to get in trouble if I have to use these at WDW? Karen

No...no one will know what the splints are for. They could be for muscle tone or control or something like that. They won't know the difference. And if they do ask...which I so highly doubt!...then you could tell them. Or not...up to you. But no one is going to ask.

I hope Ciara will be so distracted by the wonderful things at Disney that she won't feel distressed. Do crowds bother her? Has she been to Disney before?

I have just heard so many "pixie dust" stories of characters calming special needs children, etc. But I guess the opposite could occur if they are scared or something?

 

[maroo]

Totally odd question, but has anyone used the new double strollers at the parks? I want to bring ours, however, not sure I want to pay extra to take it on the plane with us. I know they asked us if were going to need a stroller and I said yes the double one. Than I saw that they have new ones now, that look much nicer, but my concern is that I am not sure if there is any place to hang Jake's TPN/IV fluids bag when he needs to rest.

Has anyone used the new ones and are the eaiser to push and are they worth it? I know weird question...

Sounds like macntosh had a good idea!

But ndloewen also had a good idea (I am sure you can PM her for more info)...she uses a backpack (I assume on her back) to hold Noah's TPN, etc. So she might have another suggestion for how you can handle that, too.

Also...you can always rest in the First Aid area. They do have full exam rooms with IV poles and everything. At MK, you could roll the IV pole into the Wish Lounge and let him watch a movie or play checkers. They are connected and he would not have to walk outside...just across the hall. As another option.

 

[ndloewen]

Totally odd question, but has anyone used the new double strollers at the parks? I want to bring ours, however, not sure I want to pay extra to take it on the plane with us. I know they asked us if were going to need a stroller and I said yes the double one. Than I saw that they have new ones now, that look much nicer, but my concern is that I am not sure if there is any place to hang Jake's TPN/IV fluids bag when he needs to rest.

Has anyone used the new ones and are the eaiser to push and are they worth it? I know weird question...

Does your TPN need to hang or can you put it in a backpack with the pump?? I'm assuming the strollers have a place in them to store stuff (although I don't know that for sure), and then you could just stick the backpack in there and grab the backpack with Jake when he goes on a ride. This is our plan for the parks. We've also used small carabeeners to hang our bags when we've travelled. We just put the bag on the carabeener and they clip great to stroller handles, beds...we've hung them from all kinds of places when we don't have a pole!

Our airline also allows us to bring our stroller for free. So you may want to check into your airline's policy about that if you are more comfortable with your own stroller. We will be bringing our own, as we need to have it outside of the parks as well.

 

[dmbfan]

We went to baby's R us and got these little stroller clips that we hook onto the handle to hang Aidan's feed and then the pump just rests on the canopy. Go check out baby's r us or walmart and look for "stroller clips". Ours were red and yellow in color, plastic and like two for $5 or something. We use them all the time and put shopping bags on them when not in use for Aidan.

We will be using a double stroller at the parks for Aidan and then if Mya get's tired from walking, she can ride.

I will have to check this out, this is a clip I could hook on too the strollers that Disney have? Thank you

 

[dmbfan]

Also...you can always rest in the First Aid area. They do have full exam rooms with IV poles and everything. At MK, you could roll the IV pole into the Wish Lounge and let him watch a movie or play checkers. They are connected and he would not have to walk outside...just across the hall. As another option.

I am sure we will check out the wish lounge, but there is no way Jake will watch a move or play a video game when he is at his favorite place in the whole wide world...

But it is good to know where this is so if I need to give meds, I can go in there where the whole world does not have to see ( as they are all given IV form)

 

[dmbfan]

Does your TPN need to hang or can you put it in a backpack with the pump?? I'm assuming the strollers have a place in them to store stuff (although I don't know that for sure), and then you could just stick the backpack in there and grab the backpack with Jake when he goes on a ride. This is our plan for the parks. We've also used small carabeeners to hang our bags when we've travelled. We just put the bag on the carabeener and they clip great to stroller handles, beds...we've hung them from all kinds of places when we don't have a pole!

Our airline also allows us to bring our stroller for free. So you may want to check into your airline's policy about that if you are more comfortable with your own stroller. We will be bringing our own, as we need to have it outside of the parks as well.

Yes his TPN goes into a backpack with a portable pump, I was thinking when Jake needs to take a brake from walking, I usually like to take his backpack off and let it hand over the stroller handle, so I did not know if the park strollers had any kid of hooks or such.

I also want to bring our own stroller caues you can bring it up to almost every ride, therefore you can leave your stuff in stroller without to much fear of anyone taking anything, vs if you left the stroller outside you have to bring all your stuff with you. So I guess we will see. Althought I keep praying Jake will be back to 12 hour TPN when we go, so all I have to worry about is his feeds and IV fluids...cause the TPN bags are so big (as you know) and the backpack is pretty darn big too. I need to call my HHC and see if they have any other kind of backpacks.

 

[littlewarriorsmom]

A huge thank you to everyone who has posted about their MAW trip. My daughter made her wish at the start of January for a trip to WDW. We're waiting to hear back.

The only problem is that I'm spending wayyyy too much time on the computer. But I can't resist reading all of your stories!

Joanna, Mom of Marenna

 

[ndloewen]

Just updated my pretrip report.

Big give with pictures.....

 

[maroo]

A huge thank you to everyone who has posted about their MAW trip. My daughter made her wish at the start of January for a trip to WDW. We're waiting to hear back.

The only problem is that I'm spending wayyyy too much time on the computer. But I can't resist reading all of your stories!

Joanna, Mom of Marenna

Welcome!!! Joanna!

Yeah...we do spend a lot of time on here! But you can jump right in and spend hours...or you can just "graze" around and hopefully pick up some hints.

If you want to go all out...you can start a pre-trip report! Then we can help you plan.

Thanks for posting!!!

And WELCOME!!!!!

 

[mindymouse1]

Just updated my pretrip report.

Big give with pictures.....

Just updated mine too (with pics) !!! Now I gotta go check on yours !!!