Please tell me we can have a successful trip!

[kellyw8863]

We are a former Wish family and are returning to Disney in April I know this will be a different experience, and we have also taken time to explain this to our girls so they know what to expect. At any rate, I'm concerned about advocating for the GAC, as Ali has mito, which is a very serious but invisible illness.

She does use a medical stroller (Convaid Cruiser for those who are familiar) to help preserve energy and reduce her exposure to germs. At any rate, here's a list of her "issues" as they pertain to a day in the parks and what has me concerned the most.

• heat intolerance - she cannot regulate her body temperature. We have seen her temp drop to the low 90s just from eating ice cream on a cool summer evening, and we have seen problems with organ failure at constant higher temperatures.
• blood pressure instability - she has sudden drops and spikes in blood pressure, which causes dizziness and has the potential to cause fainting, though that has never happened.
• immune deficiency - she receives weekly gammaglobulin in order to boost her immune system, though we still have to work hard to reduce her exposure to germs because she is literally allergic to all classes of antibiotics (hard to believe, but it's true). A simple bacterial infection (e.g. ear infection) lands her in the ICU, and a simple viral infection lingers for months and results in complete gut shut-down.
• sensory processing issues - when her body gets overloaded from heat, fatigue, illness, etc., she cannot process sensory input. This stress can result in a "mito crash," which isn't good.
• sudden stomach issues - these issues come on without warning and lead to either vomiting or needing to use the bathroom immediately (as in running full speed ahead). She takes meds to control both issues, but success is variable.
• g-tube - she's hooked up to fluids constantly on trips like this to give her a leg up should we encounter any issues.

For the record, we are season pass holders to Six Flags New England, so we don't expect (nor do we need) FOTL access - their system involves standing outside of the line for as long as it would take you to reach the front and then jumping in, so effectively you have waited as long as you would have if you had been standing in line. It is very helpful (even necessary) for us to be able to leave the line to wait in an air-conditioned area, adjust her feeding pump/deal with alarms, visit the bathroom, reduce exposure to germs, etc. But, we have had very successful experiences. We don't get to see nearly as much as we would if we didn't need these accommodations, but it means that we can spend a full day in the park with minimal impact on our child.

I do have a subscription to TP, and we have been working hard to put together an itinerary that involves lots of recovery time. I guess I just need to know the extent to which Disney will be able to accommodate us to help with planning purposes (both practical planning and emotional planning). I'm most concerned about MK because the parking is so far away from the park (even HC parking, and yes, we do have a tag). We had an experience in MK during her Wish Trip that resulted in us running (and I don't run) from Fantasyland during a parade to get her out of there, and it's not an experience I would like to relive.

Feel free to PM me if you have insights that you don't feel comfortable posting to the public. And if your only insight is to tell me that perhaps a Disney vacation isn't for us, then please keep it to yourself. We have lived more "I'm sorry, we can't do that" experiences than I care to admit, and I refuse to add Disney to the list. I just need to know how we can make this work in lieu of the FOTL access we received with her Wish Trip.

Thanks so much!

 

[WheeledTraveler]

If you have season passes to Six Flags NE, you must be relatively close to me (I live down the road from it, although haven't gone in many years)

Since you've been with MAW and you seem well aware that the MAW GAC does get you different accommodations often from a normal GAC, I'd suggest reading the page in the FAQ on this board (up with the Stickies) that contains info about the GAC. As you may be aware, WDW doesn't have any accommodation that involves going away and coming back later other than using Fastpasses. That said, unless Six Flags NE has changed massively on this (which I doubt), WDW has many more ride queues that are inside, shaded and/or air conditioned than Six Flags (I'm fairly certain it's proportionally larger, not just larger number). You will definitely want to get a GAC to be able to use the Convaid in queues.

Do you have any idea where you'll be staying? Considering your concerns about MK, it would probably be really good if you could manage to swing the cost of a Monorail hotel. They're definitely more expensive, but they'll also be the fastest for getting back if you really do need to get out fast and MK is definitely the park where it's hardest to get between the parking lot and the park. Also, in any park you can use the first aid center for a break if your daughter needs the rest, but doesn't need to go back to the hotel.

Otherwise my main advice would be to look at touring plans that can give you an idea of when ride times are shortest for the rides your kids like. Touring plans and fastpasses will probably be your best bet for keeping wait times down. Since you've said you'll be there in April, do be prepared for crowds since it's a month with many school vacations. Even in non-busy times there are rides where people with GACs and mobility devices may end up waiting longer than someone in standby, but using touring plans and fastpasses should reduce those problems. Also, because April can get hot you might want to look at one of those mister fans that has a water bottle with a fan on top. It may be able to help cool her better without having the problems that something like a cooling vest could trigger. (Back before I got my actual diagnosis a form of mito was on the list of possibles and so I at least somewhat understand the problems regulating body temperature and the dangers of going too far either way.) Finally, as far as germs go, you may want to look at a mask. I know it's not fun to wear, but it will reduce her exposure and there's little any theme park can do about reducing germ exposure so that's one place you'll have to do more work.

 

[Betty Rohrer]

are you staying on site as the parking at MK is what you remember from wish trip. getting out at parade time is all but impossible and getting to first aid is harder. you will be able to get her a GAC but not sure how it will help if fast pass line has a back up. heat can still be be hard to control even in April.

 

[kellyw8863]

Thank you for your responses! Six Flags is not particularly handicapped accessible, and I know that's why they have the card that they do. We do have a cooling best for her, but as her mito doc explained, it's only good for preventative care, but if we put it on too soon, her body temperature drops too much - a true conundrum.

When we went on her Wish Trip, it was April vacation for MA schools, so the same week that we are going this time. We know it will be crowded, and we know it will most likely be hot. Unfortunately, DH and I are both school teachers, so our only other option is summer, which won't work for the heat intolerance issues.

We have looked at Touringplans, and we have the app on our phones. We've also spent some time over at EasyWDW, so we're confident we can put together a decent touring plan. I am concerned with the FP changes, because things can be so unpredictable. If we're stuck in a bathroom or dealing with another issue, we can't drop everything to make the FP window. But we do know this going in and are realistic about it.

As for where we are staying, we will be at Bonnet Creek. Staying deluxe is not in the budget, and even if we did stay in a monorail resort, we would still likely bring our car (unless it was the Contemporary), because we need to travel with her back-up equipment and changes of clothes, which we tend to leave in the car. We've found that to be less disruptive to her than dragging her back to wherever we're staying in order to deal with things. She has missed out on a LOT in seven years, and is very sensitive to the fact that her life is so different from typical kids.

So thank you again for your feedback - I do appreciate it!

 

[Nevada Jen]

We have done WDW several times with our DD in her wheel chair. She is also very medically complex. We have had a great time with the just the GAC and no make a wish perks. I think you will be totally fine and really enjoy it. I would plan a character meal rather than chasing characters down at the park. That really ate into our time at the parks and the GAC was absolutely no help. If you can somehow cut our character greetings, I think you will enjoy the park just as much as you did on your MAW trip. I would suggest calling ahead and seeing if you can leave your emergency supplies and clothes changes at first aid. That way you don't have to carry it around all day but its close enough that you can get to it faster in an emergency.

 

[KPeveler]

Something good to know - you can always stop at First Aid for a place to lay down, relax, change clothes and take care of toileting needs. You can get a ice pack to cool down, lay down to balance her blood pressure, take a nap, etc.

 

[Shelly F - Ohio]

I hate the heat so bought a Frogg Togg cooling towel and they are wonderful for coolingl off with. I wet my towel and carry it in a gallon size ziplock bag to keep from get everything else wet. After about 3-4 hours I simply rewet the towel and it reactivates the coolness.

You can get them at Walmart in the camping dept or at Bed Bath Beyond. The cost $13.00

http://www.froggtoggs.com/store/cooling-products.html

When you get back to your resort hang the towel up to dry and prevent it from molding. It will dry stiff as a board. Then in the morning rewet it and put it in the ziplock bag.