Travelling with toddler w/g-tube feeds. Some questions...

[dreamsofdisney]

Hi all!

We're planning our April 2011 trip to WDW and I have a few qwuestions about travelling with our DD who will be 2 at the time of travel. We've been to WDW lots of times in the past with DS who has H-F Autism, so we know about the GAC, but now we're heading into new territory.

Our daughter is a former 1 lb 2 oz micropreemie. She's tiny, but mighty, and we feel so blessed to have her in our lives!

BEFORE Wearing Daddy's wedding band on her arm

AFTER Showing off her Button Buddy @ 18 months

She's doing very well, considering, but does have some challenges. She is very small for her age (not even on the growth charts!) and has mild bilateral spastic diplegia, BPD, vocal cord paralysis and general devolpmental delays. One of the hardest things is that she is unable to swallow anything other than small amounts of liquids...and even for that, she has to be positioned just right so that she doesn't aspirate. (Due to a glottal gap that leaves her trachea exposed, and low tone in her neck/throat.) She takes most of her nutrition through her g-tube, and the GI docs are not optimistic that there will be any change in the 6 months before our trip.

Does anyone know about the airlines' policy on bringing medical pumps, bags and formula/Pediasure onboard as carry-on items? We're probably flying JetBlue instead of Southwest this time, and I can't find anything specific to the pump and supplies on their site.

TIA!

 

[amesyrn]

Hi...
We're actually sorta in the same boat our DD will be 10 mths when we travel. We'll be leaving for Disney at the end of October, and our daughter has a lot of the same issues. We are also using Jet Blue. I called and talked to them there and they have been great answering any and all my questions. (there have been many) The pediasure should be no problem you should just show that to security when you go through security checks. They werent sure but said that if I could get a medical need for the formula just in case it would be safer. They said there was no limit to the amt of medical equipment you can bring on board. However if your DD needs the use of O2 you need to talk to them, as the pressurized cabin is not good for this. We'll be leaving in less than a month (yikes)and I can let you know how that all goes. GL on your trip. Your DD is beautiful!

 

[dreamsofdisney]

Thanks for the info! Since our trip was still 6 months away, I hadn't taken the step to call them yet. I had a feeling that there wasn't a limit on the amount of medical supplies, but I was worried about the pump, the volume of Pediasure, and the logistics of the whole thing! Thankfully, she doesn't need O2, but she'll definitely need at least one feed while in air, so it's not something we can do without.

I'm also wondering how things will go at the parks. Is there a fridge somewhere in the baby care area where we can keep her ice packs and formula cool? It's stressful enough thinking about going on rides and leaving the stroller with her pump in its backpack. What if someone walks off with it?!?

I'm so excited for you that your trip is so soon! I've always wanted to go to WDW in October! I hope you'll report back and let me know how things went for you. Have a magical vacation!

 

[amesyrn]

DD's doctors werent going to let us go unless we had a concrete plan in place and could show them that we had everything in place. Thats why the excessive calls and info gathering. Although I do like to be prepared for everything So I had to have all this info and they are still not completely happy bout the idea, but our family needs this... Yes there is a fridge where people keep their meds in at the first aid stations. Not sure if there is one at the baby care centers. Although I dont know if I'd leave it there if there was one. (other people could take it, ect.. My DD is on continuous feeds so we dont need that option, but she has some meds that need to stay cold. Also We are going to use her stroller as a w/c so that we can wait in lines with it, and only take her off all her "machines" when we get to the ride. This may be an option for you, and then you wouldnt be too far away from your stroller and $$$ medical equipment, other than going on the rides. This will be our first trip with her so I'm not sure exactly how everything will go. Hopefully by the end of our stay we will have everything ironed out, and will be able to give you more tips and advice.

 

[alizesmom]

We've taken kids with trachs, feeding tubes, continuous and bolus feeds and even a vent. WDW is great about it. I recommend you check with the first aid station about storing formula, it is also a great place to relax, change diapers and do feeds. Our kids have been in wheelchairs but we haven't had any issues with leaving their medical stuff while on rides. As to the large amount of stuff you need to take with you. Have you considered shipping some of it (such as most of the pediasure) to your resort ahead of time? It costs a bit but saves the hassle of carrying it to and from the airport and the proverbial fear of it getting lost while flying. Do check with the airline about oxygen if needed. They will not supply it and you usually have to rent a portable concentrator (which is pricey). I'll be happy to try and answer anything I can. Have fun. Karen

 

[jmartinez1895]

My son does not have a tube, but he is must drink pediasure many times a day to try and keep his weight up. When we flew last April, I took 3 bottles in the bag with all his otehr medical things and told the TSA before I put the bag on the scanner taht I had a large amount of medicine to declair. The rest of it I packed in our checked bags and it did great. I did have the number for a local grocery delivery company just in case I needed more or if somethign happened to those, but I never needed it.

 

[PrincessAndrea'sMom]

My little Princess, Andrea, was also a micro preemie, just over 1 pound. She was born in April 2009. She is trached due to severe trachial malicia. She is almost 17 pounds now, very under weight, but healthy. We took her to WDW in November. Our family needed the time together so badly, after five months at hospitals. I am a planner by nature, so I had it all worked out before we went. I checked into local hospitals and found Orlando Children's to come highly recommeded. I took all of her equipment as carry on with no problems, on Southwest. I carried on about two days worth of formula and checked the rest. The baby care centers in the parks were great. Overall, we had no problems. It was a great trip! We are going again in Decemeber!

Good luck with your beautiful little girl! It is hard to see them go thur all they do, but they will get there! Have a great time at WDW! If you have any questions, feel free to PM me!

 

[prncess674]

The baby care centers will put things in the fridge for you, but the question you may want to ask is do you want to trek back to BCC for every feeding. Packing a soft sided cooler may be easier especially if she will feed in a quiet corner of the park.

Considering you have a small child you probably won't be going on any big rides so placing a small backpack on the floor of a ride with anything you are nervous about leaving in the stroller will be easy. Pack two bags. One with stuff that is easy replaced and can be left in the stroller if stolen(diapers, wipes, extra change of clothes, etc) and one with the expensive and/or critical items (med equipment, cameras, etc.) Backpacks are your friend since it frees your hands to shuffle and deal with kids.

Magic Kingdom® Park:
The Baby Care Center is next to The Crystal Palace restaurant on Main Street, U.S.A.

Epcot:
The Baby Care Center is inside Future World's Odyssey Center.

Disney's Hollywood Studios™:
The Baby Care Center is in the Guest Services Building inside the Main Entrance.

Disney's Animal Kingdom® Theme Park:
The Baby Care Center is behind Creature Comforts in Discovery Island™.