5. Get as many batteries as you can
At home we use a large plug in oxygen concentrator and small tanks when we go out of the house. Since you can not fly with tanks we rented a portable oxygen concentrator from our DME. While it is smaller then what sits in our living room, it weights more then my 2 1/2 year old and was the same size as the basket on our Baby Jogger Summit x3. We had never used a portable unit before as this was our first trip with oxygen. Our DME gave us two batteries that stayed in the unit. The "supposedly" last 5.75 hours on my child's rate, however they never lasted that long. An extra battery would have been very helpful at times and would have made us have to find a place to charge less often. There were times where what we could do next revolved around plugging in to charge for a while. I would recommend seeing how many batteries your DME will let you borrow with the concentrator and take as many as you can.
4. Stroller as a wheelchair
My little one is 2 1/2 and is on oxygen and a feeding pump most of the day. She also has low muscle tone and can only walk for short distances, if she walks too much it takes too much energy from her that is required for her other organs to function. She will need a wheelchair as she gets older when we are out of the house so that she can fully participate in things without it being too much work on her body. However at 2 1/2 her stroller works just fine for getting around (that is why we invested a year ago in a nice stroller, it gets a lot of use). Carrying her, her feeding pump, medical supplies, and a 20 some pound oxygen concentrator through all the lines would have made it so we could not have done as many things as we did. Having her stroller tagged as a wheelchair was a life saver for us and made it so we could enjoy Disney. We only came across one other guest who was not so kind about us being let into the Land with a stroller when she was being told to park her's. She was rather rude to the cast member, who we all felt bad for. Getting the tag in our case was rather easy, we went to guest relations and said that we needed it and then the cast member looked at Jillian and went and got it. I know other people who have said they need to explain why they need it, and that is so that people are not abusing the system, otherwise it will go away for those of us who really need it. We did not get a Disability Access Card (DAS) because we did not feel like Jillian's needs required it, that as long as she could be in her stroller while we were in line that we did not need more accommodations, but that is who Brent and I are, we will use as few accommodations as necessary to participate in a situation because we don't want to abuse something so then it is not there for others who need it or not there for us in the future in case we really need it then.
3. Make friends with cast members
When you need to plug in every few hours you end up sending a lot of time looking for outlets. There are some of your typical charging areas (Rapunzel bathrooms in the stumps) but those are outside in the heat. Most of the time when we needed to charge we wanted to charge while we ate so we were not just sitting around doing nothing and wasting precious Disney time. Restaurants do not have a lot of outlets in them and sometimes they were located in really odd places, however the cast members that are cleaning in the restaurant know where they are located because they use them for cleaning. We learned that they were more then helpful to help us find a place to charge the oxygen once we let them know it was oxygen we were charging and not a cell phone. We also had reservations for Prime Time 50s for lunch one day and her oxygen was about dead so we needed to charge it during lunch. We checked in for lunch about 15 minutes early and let them know what we needed and why and they found a table for us right next to an outlet. Explaining what we needed and why in a calm way got us really far.
2. You will still be able to do most things
Any ride my two year old wanted to do and was big enough to do (she really wanted to ride Big Thunder Mountain but is many years away from being tall enough) she was able to. Sometimes we needed to get a little creative and sometimes cast members worked with us to come up with the best way for her to ride, but we were able to make it work. For most rides we did not transfer Jillian out of her stroller, if it was a ride she could stay in her stroller then she stayed in. Her oxygen was hard to get out from under her stroller and more secure in the stroller then sitting out on a ride. With her low tone she also does not sit up nicely for long amounts of time so it is better for her to be in her stroller where she is best supported. We did not find that her oxygen kept us from doing anything she wanted to do. She is also only two so there are rides she did not go on so I am not sure how those work with oxygen (if a ride has a height requirement she did not ride it) but maybe someday down the line we will figure that out, but the great thing about Disney is that most rides are meant to be enjoyed as a family so a two year old can go on most things.
1. Enjoy
Chances are that if you are taking a child on oxygen to Disney that your life is rather full of doctors and therapists and all sorts of other medical things. While you still have to tend to your child's everyday medical needs while at Disney, it seams a little less "medical" doing it at Disney. Enjoy the time there, it is truly a magical place. Use it as a time to recharge yourself too so you can go back home and jump back into the craziness of raising a child with medical needs. I have a child who is happy during most things (including GJ tube change outs in IR) but there is nothing quite like the joy on her face while we were at Disney, that was priceless!
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| We met a TON of characters while we were there and they were so good with Jillian |
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| Charging at Columbia Harbor House |
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| Oxygen on the Tea Cups (that was Brent holding it so we did not spin much) |
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| Charging in the ABC Commissary |
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| The accessible boat in the Jungle Cruise |
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| Charging and Jilli playing iPad while we ate at Prime Time 50s |
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| Riding in the accessible boat on Its A Small World |
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| Oxygen and Jilli recharging in Pinocchio's Village Haus |
Magic Kingdom:
- Its a Small world- in stroller
- Buzz Light Year- transfer
- Country Bear Jamboree- in stroller
- Dumbo- transfer
- Enchanted Tales with Bell- in stroller
- Haunted Mansion- transfer
- Jungle Cruise- in stroller
- Tea Party- transfer
- Mickey's PhilharMagic- in stroller
- Monster's Inc Laugh Floor- in stroller
- Peter Pan's flight- transfer
- Magic Carpets of Aladdin- transfer
- Winnie the Pooh- in stroller
- People mover- transfer
- Journey of the Littler Mermaid- in stroller
- Railroad- in stroller
- Carousel of progress- in stroller
- Tiki room- in stroller
- Gran Fiesta- transfer
- Journey into imagination- in stroller
- Spaceship earth- transfer
- The Seas with nemo- in stroller
- Muppet Vision 3D- in stroller
- Toy Story Mania- in stroller (this one took the help of manager)
- Frozen Forever Sing-along- in stroller
- Fantasmic- in stroller
- Disney Jr. Live- in stroller
- Kilimanjaro Safaris- transfer
This is really a comprehensive overview for people with special needs children. Great job. It sounds like it was an awesome vacation and everyone had a ton of fun. Thank you for sharing - I so enjoyed reading everything.
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