August Visit with a Child with Cystic Fibrosis

[ForeverDance]

We will be taking a family vacation to Disney at the end of August. We have been to Disney 4 times total, once in July, twice at the end of August, and once at the end of September so I am well versed in how hot it will be. This will be our first trip with our youngest DD who will be almost 23 months at the time and has CF.

I feel fairly confident overall with being able to manage her needs in the heat. I have discussed with our CF team and they are all for us taking her. We will be prepared with pedialyte (or gatorade depending) and will be taking it slow and taking frequent breaks in the air conditioning. I know most rides that she would be going on have shaded/air conditioned entrances so waiting for these shouldn't be an issue, and we could bypass (or fastpass) any that are not shaded if the wait is too long.

Where I am really struggling is with Animal Kingdom and in particular the shows. In the past we have had to wait 40+ mins in the hot sun to get in to the Finding Nemo show and we haven't been to the Festival of the Lion King, but my understanding is that one is the same (no shade, long wait if you expect to see the show). I really think this is something DD would enjoy so I would really like to take her to them, but only if it can be done safely. Does anyone know if there is somewhere shaded that we could wait? Or anyone have experience with getting in to line only 10 minutes before the start of the show? Are there other options I am missing?

 

[rewardsinlife]

GAC. Might help you out with the shows, and the long waits in the sun. Also, a cooling best might help her out if it is really hot. Hopefully sme others that have used the GAC in this manner or the vest with chime in.

 

[SueM in MN]

Animal Kingdom is hot, no matter wht you do.
My youngest DD has cerebral palsy and seizures, both of which are affected by heat and humidity.
The first thing we do in planning for Animal Kingdom is checking websites like www.touringplans.com or www.easywdw.com
That helps us to find the days that are projected to be least busy. Then, we look at the weather forcast and try to find a cooler day, possibly overcast out of the days of our trip.
Doing those things at least gives us the best chance for a good day.

GAC. Might help you out with the shows, and the long waits in the sun. Also, a cooling best might help her out if it is really hot. Hopefully sme others that have used the GAC in this manner or the vest with chime in.

A GAC would probably not really help much for those 2 shows because there is little to offer in terms of accommodations for getting out of the sun/heat in those locations. Neither of them have any shaded, cool areas close by, except for bathrooms.

You can find more about Guest Assistance Cards in post 6 of the disABILITIES FAQs thread, near the top of this board or follow the link in my signature.
You may want to check into getting a GAC to use a stroller as a wheelchair - this would mean you could bring the stroller into shows and have it treated as a wheelchair. That way, your child could be shaded by the stroller sunshade in lines where there is little shade.
You would not need to use it for all line, but it may be a good option to have.

Festival of the Lion King area is at least partially shaded by trees. The only buildings nearby are bathrooms near the show exit (across from the character greeting lines). For at least some of the wait, it is not possible to get into he how building because it is busy with the last show.
When we have been at AK, we have heard CMs trying to steer people toward going to Festival of the Lion King for the first show of the day. Being early in the day, it would be cooler and maybe a shorter wait - at least the building would not be full of guests seeing the previous show.
That show is moving to a different theater at some point in the future, but not before your trip.
If you are using a stroller as a wheelchair, you would be waiting further up in line, where there may be more shade.

Finding Nemo is about the worst line, in terms of shade - there is none to speak of. There are no buildings nearby, except for a set of bathrooms ort of behind the theater. We have asked or accommodation there and have been told they have nothing to offer in terms of getting out of the sun. We deal with that one by having most members of our group wait in one while one person waits with DD as much out of the sun as possible. DD and whoever is waiting with her join when the line starts to move.
We also use members of our party to shade DD and block the sun from hitting DD.

 

[lost*in*cyberspace]

Simple solution - bring an umbrella and make your own shade.

 

[ForeverDance]

Thanks for all the responses.

I did use some of the planning sites to help determine which days would be best for each park so hopefully it will work out that way for us. We will be doing AK first thing in the morning for only a couple of hours and then leaving before the midday sun gets too hot.

I had not considered the stroller as a wheelchair option. It almost seems like a "cheat" and I'm not sure how comfortable I would be with that but it is an option.

The umbrella option could work, but I'm not sure I want to open an umbrella in an area crowded with people.

 

[gilesmt]

I guess I have had different experiences with GAC, when it was just me with my GAC in Nemo, I was taking thru the back door just minutes before the show and seated up front. I have a card for front row seating, they told me no need to get in line early, just come 10 minutes before the show.

The following year, we had a group with lots of different GAC cards. So the CM asked us if we wanted to seperate to get all our needs meet, of what would be the most important of all our needs. We said close up and no stairs, she said find come back again aboy 10 minutes before the show and ask for her. We did, she took us in and we got to sit in a great spot that pretty much accommodated all our needs.

At lion, we requested just about the same thing because we had a lot of different GAC. We where told to come back at a few minutes before the show, can't remember exactly when, but no more than 15 minutes. We were asked if we coul be seperated into two benches, one in front of the other and if those that would not be bothered sit behind a little girl in a w/c, we said no problem and they took us right in.

We had gacs for blindness, heat, cane and mobility issues, and spectrum disorder. Which accommodation we got I am not sure, but they seemed to really help each one where they placed us, and allowed us not to have to stand and wait, saying to come back minutes before the doors would open. I thought they did a great job at giving us what we needed. I would ask for a GAC and then explain to the cast member exactly what you need, I am sure they will try real hard. Especially since it is a little one, I find they try harder for the little ones, not to say they don't for older ones.

 

[StitchesGr8Fan]

Could you use a stroller as a wheel chair card, get a stroller with a good sunshade, and get a fan to clip on the stroller to point directly at DD? You could also get a mister fan and fill it with ice water as an extra burst when needed.

 

[PinningTinkerbell]

They make pedialite in on the go packets (like crystal light).... They would probably be worth looking for just because you could buy a cold bottle of water anywhere to put it in and that way it would be cold and you wouldnt be carrying around heavy bottles of the stuff....

 

[buffettgirl]

we've had no trouble walking up to Lion King right near show time and getting a good seat. We've done that multiple times. Nemo almost never is full anymore either, so I don't think you'll have trouble with that either.

In fact, last August we did it at almost every show - even over at Studios.

 

[ForeverDance]

They make pedialite in on the go packets (like crystal light).... They would probably be worth looking for just because you could buy a cold bottle of water anywhere to put it in and that way it would be cold and you wouldnt be carrying around heavy bottles of the stuff....

Thanks. Where have you seen them? The reason I was thinking about Gatorade was because we have the powder. If we can get the Pedialyte powder than that would likely be a better option.

we've had no trouble walking up to Lion King right near show time and getting a good seat. We've done that multiple times. Nemo almost never is full anymore either, so I don't think you'll have trouble with that either.

In fact, last August we did it at almost every show - even over at Studios.

Thanks for the info. I am thinking we might just try getting a GAC to address the heat exposure issue and then if they can't accommodate us for the shows, we will just try to get it line at the last minute. If we don't make it, then at least we didn't spend a long time waiting.

 

[GaudenziGirls]

Hello, just wanted to chime in with some info..... My daughter and I just came back from WDW, she has cf and we were able to get the GAC for her and use her stroller as a wheelchair and it really helped a lot! I explained her disease to guest services (at animal kingdom) and they were amazing about it, I also brought letters with diagnosis and medication etc from our cf team but they told me not to worry about showing it to them! I was a little worried about using the GAC because cf is an invisible illness and thought I may get dirty looks from others but was encouraged by staff at our resort to ask for one! I would say please please try getting yourself one! It will make a difference for your little one! Hope you have an amazing trip

 

[KPeveler]

Even if you use the stroller as wheelchair option for her to help with waiting in the lines, that does not mean that you must use them in the shows. In fact, I would not suggest that for most shows - strollers often would sit her too low to see over the seats in front of her (I am thinking regular strollers, not a special needs stroller)

You can use it in lines, tell the CM you would like to transfer, and then depending on the show's protocol and the CM and the distance you would be required to walk, you would either (1) be directed where to park the stroller and then you would walk in and sit as usual, or you would (2) drive the stroller right up to your row, transfer into the seats and then you or a member of your family would drive the now empty stroller back to the transfer-parking area. You would not be the only family doing this with wheelchairs and scooters, and for a show as large as Nemo at least, I would wager you would see other strollers being used in a similar capacity.

Things to think about: does she use oxygen? Does she need medical equipment at hand? In addition to the pedialyte, I assume she will be eating what and when most toddlers do - small amounts of food frequently. A child with chronic invisible illness needs food to hand even more imperatively. All of this (her diaper bag, medical bag, all those liquids, medical equipment) you will be able to keep on hand without having to carry it, and her, in lines.

In addition, you will have your stroller, which usually has a shade on it (if yours does not, I suggest buying one or renting one for this trip), and a towel or light weight blanket or sheet can provide a cover for her completely if she is sleeping. You can get a small clip-on fan and put it on her stroller, which can help immensely for keeping her (and your other kids - unsure of their ages) cool. If she has problems with overheating, regulating body temp, or her meds make her heat sensitive (all these things happen to me, though not because of CF) there is everything from cool towels you can get wet in the restroom to full on cooling vests (which may be a bit much for a 2 yr old, but may be useful in the future).

Also, in AK every line is mainstreamed, so pretty much you can take the wheelchair all the lines (at least for the rides she is tall enough for - as you are Disney veterans, I assume you know about baby swap?) In Epcot and Hollywood Studios, nearly every line is mainstream. This means that with a stroller-as-wheelchair GAC, you would go in the regular line with everyone else, so you are definitely not "cheating." At MK, some lines are not mainstreamed, but most of the ones I can think of, you are not bringing a 23 month old on anyway. I have not done anything in Fantasyland in a long time, so someone else would have to tell you about accessibility here.

Does she need breathing treatments, like a nebulizer during the day? Rather than carrying it around with you, you can drop it off at First Aid in any park and they will store it for you. You can do breathing treatments there, or take breaks. Every park has a First Aid center, and it is a place you can get some rest (anyone in the family who needs it). Each First Aid center is air conditioned and has both medical treatment rooms (looks like a dr's office) if you need anything from bandaids to breathing treatments, and areas with cots for a comfy place to lie down. They are all staffed by licensed nurses, so there is help there if you have questions too. I am in the one in Disneyland so much, all the nurses recognize me.

I would go to Guest Services when you get to the park and talk to them about a stroller as wheelchair card/tag as well as any other concerns you have (such as queues in direct sunlight).

I think using a stroller as wheelchair option would be wonderful - it gives you extra options for keeping her cool, and you do not have to carry her and all her gear in all the lines.

Another plus - if you take her stroller in the queues, it is generally waiting for you at the ride exit, very close. As you may have experienced, stroller parking is rarely near the ride exit, and due to a variety of reasons, your stroller may have moved by the time you exit a ride. I would be nervous leaving medical equipment in a stroller that can be moved on you, as opposed to knowing it will be close at hand should you need it.

Remember - this is about the health, comfort, and safety of your child, and Disney has put these tools in place for situations just like these.

ETA: Your GAC will be good for all 4 parks for the length of your stay - the only place the GAC does not work is the water parks.

 

[lanejudy]

They make pedialite in on the go packets (like crystal light).... They would probably be worth looking for just because you could buy a cold bottle of water anywhere to put it in and that way it would be cold and you wouldnt be carrying around heavy bottles of the stuff....

Thanks. Where have you seen them? The reason I was thinking about Gatorade was because we have the powder. If we can get the Pedialyte powder than that would likely be a better option.

My grocery store carries the powdered Pedilyte in the baby food aisle, same location as the bottled Pedialyte.

Also, no need to BUY cold bottles of water - any CS location at WDW will give you a free cup of ice water on request. We carry reusable water bottles and get the ice water from a nearby CS whenever needed.

I also think for a 23-month-old the stroller-as-wheelchair with a good sunshade (maybe an oversized one? look online) and fan/mister would be a good idea. Please don't even think that it's "cheating" - it will help your DD. Would you prefer that she suffer in the heat because you were worried about how it appears to others? Then it's not a "cheat" by any stretch of the imagination. You don't need to use it all the time, only in those situations where it's necessary. Otherwise, it can be parked and you all walk in the line.

Enjoy your vacation!

 

[ForeverDance]

So I was able to find the electrolyte powder in the grocery store (and Walmart). It actually wasn't easy to find as it isn't always in the same place as the rest of the pedialyte but I did find it. We have actually been using it already this summer because it is so convenient, expensive, but convenient.

I have decided to go ahead and get the GAC to allow us to use the stroller as a wheelchair. I guess I have been feeling a little unsure because I don't want to be abusing the system. DD is so healthy right now. She actually doesn't have any nebulizers or other breathing treatments because her lungs are still completely clear just from the chest percussion therapy. She has great stamina etc. and so I thought it was kind of cheating. But when you think about the reason we want to use it, so she doesn't overheat and get sick, it makes perfect sense.

 

[CarrieR]

Depending on your plan as far as breaks, etc and how frequently she does her vest - if you feel that she will need it in the park, that could be left at First Aid as well. If you end up needing to take a neb, I believe they can also store any medication that might need refrigerated.

One suggestion - invest in a filtered water bottle (we use Bobble and love them.) You can get water from a drinking fountain and then filter it into a sippy cup to add her pedialyte mix to. (Don't add the mix to the Bobble/similar, it will clog the filter.) That way you don't have to haul around bottled water -or- wait in line at the CSes.

I am also subscribing to read others' ideas - my former nanny kids have CF and are planning a Disney trip in the not-to-distant future. They don't tend to have overheating issues, but of course, Ohio does not equal Florida! Based on my experiences with them, I would encourage you to NOT hesitate to request any services you feel might help your daughter. As others have said, CF is exactly the type of hidden disability the GACs are designed for. Better to obtain one and never need to use it than to not have it when you need it. Glad to hear she's doing well thus far!

 

[KPeveler]

So I was able to find the electrolyte powder in the grocery store (and Walmart). It actually wasn't easy to find as it isn't always in the same place as the rest of the pedialyte but I did find it. We have actually been using it already this summer because it is so convenient, expensive, but convenient.

I have decided to go ahead and get the GAC to allow us to use the stroller as a wheelchair. I guess I have been feeling a little unsure because I don't want to be abusing the system. DD is so healthy right now. She actually doesn't have any nebulizers or other breathing treatments because her lungs are still completely clear just from the chest percussion therapy. She has great stamina etc. and so I thought it was kind of cheating. But when you think about the reason we want to use it, so she doesn't overheat and get sick, it makes perfect sense.

Remember First Aid is there with treatment rooms if you need to do the chest percussion therapy while in the parks - I think many people would confuse a medical treatment with abuse (obviously I know the difference). As I said, all the people staffing First Aid are RNs, so they know what you are doing and will help if you need anything.

Also, almost all lines are mainstreamed at Disney. So using the stroller will not give you any "advantage" or let you "cheat." You will be going into nearly every line normally. If you wish, you can park the stroller and your DD can walk - I would save this for shows or places where you know you get to wait indoors (Philharmagic, Muppets, etc).

For the Lion King show, I suggest you keep the stroller in line since it is HOT, but transfer once you get in there - there are very very few wheelchair spots at that show, so the CMs ask everyone who can to transfer. But this does not seem like a problem for you.

You are allowed to bring a cooler in (you can put it under the stroller). If you get too concerned, you can always just keep ice packs to cool her down. Or carry those one-time use ice packs (I get mine at the Dollar store - maybe not the coldest, but they work great for me!)

Also, since it will be summer and it WILL rain every day, bring ponchos. Some people buy them there or get fancy ones. I buy ponchos at the dollar store (I can get then in a 2 pack for $1 sometimes). They are cheap, but they still keep me dry, and then I just throw them away. If you do park the stroller, cover it in case it starts raining. I would just throw a poncho over the whole thing.