Wish trips aren't just for life-threatening problems. They are also for kids with chronic issues also. I would look into it. It is for all of you, but it is for the special child mostly. Maybe you could get a wish granted thru them and be able to spend more time at the "Most Magical Place on Earth".
I found out recently (lots of good it did me now as a adult), that with the kidney issues that my sister and I have, we could have possibly been granted a trip as kids. It won't hurt to ask.
Many chronic conditions are life-threatening, even though people don't think of them as that.
The MAW national website indicates:
"We determine a childs medical eligibility with the help of the treating physician. To receive a wish, the child must be diagnosed with a life-threatening medical condition i.e., a progressive, degenerative or malignant condition that has placed the childs life in jeopardy."
So, their definition does include life-threatening. But, DD has cerebral palsy and epilepsy among her other conditions. She did not go on a MAW trip, but we were told she would qualify (although, I know her seizures could be life-threatening, we don't think of them that way).
Hi Terra! I'm THRILLED that you guys are going to be able to do this. I know that you all have had a difficult year. Having done Disney with mito, I agree with the others who said to focus on only one park for the two days. We found the experience to be entirely overwhelming for Ali, and when we started off trying to do way too much, we had many problems. Once we slowed down and took things as they came, things went way better.
In terms of where to go, MK is THE park if you need to choose only one day, but we found AK to be the best in terms of accommodating our needs even though we were on a Wish trip. MK was good, but we had to be a bit more assertive in using Ali's GAC. Granted it was very crowded the day that we went, so that could have had something to do with it. We never did make it to either EPCOT or Hollywood Studios.
I also agree with the others who said contact MAW. As long as Kendall's issues are considered life threatening or life limiting (that's the criteria in MA - different states have different criteria), she will qualify, and I know she will qualify based on mito and what she's been through. We did self-refer (and struggled with the decision - it partly had to do with the fact that we had a 17 year old foster son with his 18th birthday coming up and we wanted him to be eligible to attend), and I'm glad we did. Ali's mito doc called us after he received the paperwork and said he was glad we made the call, because he had assumed that we already had been referred. He felt badly that we hadn't and was thrilled for us.
Best of luck with your planning, and don't hesitate to either message me here or on FB, and I'll help you however I can!
WDW is overwhelming for even people without any medical complications, so even more overwhelming when dealing with all the extra medical issues.
Seriously - you people are all so awesome! SO much good info here!
So after looking at the different park attractions a little bit more - I think Magic Kingdom will be THE place to be! None of my girls have a clue what WDW even really entails - so I'm going to do most of the "logistical" planning about things to see and do - and then once we tell them on Christmas, I'll let them help narrow it down or prioritize what each of them most want.
I still feel like i have so many "annoying" little questions and not nearly enough time to search old threads!
Food: I know we can bring in "snacks" (and i would assume we could bring Kendall's TPN/fluids/tube feeding stuff).
you can bring it into the park with you without problem. You can store medical supplies and equipment at First Aid - every park has a First Aid Station. You can also use the cots there for resting.
Pretty sure I won't have nearly enough time to set up a dining plan - is that a necessity? Can we determine which meals we will eat inside the park and then just go to that restaurant? Or should we look into making reservations ahead of time?
if you are talking about the dining plan, that is kind of like prepaying for your meals. It is a LOT of food for each meal, plus snacks. Unless you plan on eating a lot, it is probably not worth the money.
Each park has some table service restaurants and some counter service. If you want to eat at the table service, it is better to make reservations ahead of time - especially if you want to eat at certain restaurants or need certain times. Be aware though that some restaurants require a credit card to make the reservation and will charge $10 per person if you cancel less than 24 hours before your reservation.
This will help explain the dining plan:
http://www.wdwinfo.com/disney-dining-plan.htm
And, this is a link to the WDW restaurants, so you can check menus, which are counter service, etc:
http://www.wdwinfo.com/wdwinfo/dining/disneydining.cfm#mk
I've heard about the "refillable cups" also - is that a good recommendation?
The refillable mugs are bought at your resort and allow unlimited refills at your resort food court during the stay they were bought. They can be a good deal for people who plan on using them at least once or twice a day ( and you get to keep the cute cup). You can't get refills at the parks.
Photos: How do we get the Photopass CD thing? (I'm sure there's a thread about that somewhere here! Just trying to organize my questions in my own head!)
As was already mentioned, you can get a Photopass card from any Photopass photographer. This will explain Photopass a bit more:
http://www.wdwinfo.com/wdwinfo/digital-photos.htm
Weather?: For anyone who has gone in January - is it rainy? Freezing? What should I pack for the kids clothing wise - shorts and sweatshirts? Or full on jeans/sweaters, etc? (we live in Chicago - January = I want to hibernate from the freezing wind and sub-zero temps).
Others already answered, but I will agree - not as cold as Chicago ( we are from Minnesota). Jeans, sweatshirts. I would suggest layers. When the sun is out during the day, it can be warm, but won probably be hot. Once the sun goes down, the temperature goes down fairly quickly that time of year.
Bete - Thank you so much for your concern. It WILL be very tough. I have only flown with her alone when we needed a medical angel flight to an out of state hospital to receive care. She was nowhere near as complicated then and it STILL took a lot of coordination so....yes. I am going to have my hands full. I plan on getting full documentation of everything that she needs so that I can take "back up supplies" of everything with me on the flight (for instance I know that her liquid TPN/formula/IV fluids will need to be examined by TSA, etc) - and in case anything would happen to delay the flight. I don't have any notions that it is going to be an easy stress-free experience by any means, but I think I'm at least semi-prepared for worst case scenarios.
We have done a few family trips with all of them (drove cross country from IL to RI, gone to Wisconsin Dells, just getng to Target some days is an adventure!) - and luckily, our older two are VERY helpful with everything. So all in all - it will be crazy, but that's kind of our family motto. We haven't had nursing now for three months, so at least we are used to having to take care of all her medical needs on our own! I know there is a great children's hospital in Orlando that would be able to handle anything that came up while we were down there.
I will definitely check out the resources you are talking about for the disabilities guide to disney!
Thank you again!
terra
Check out post 3 of the disABILITIES FAQs thread. Near the top of that post, there is a link to the WDW page for guests with Disabilties and the various pieces if information on the website. They no longer publish a Guidebook for guests with disabilities, but have replaced those with Guidemaps. There are links to the Guidemaps in that post also.
Just wanted to let you know that this week, Minnie was NOT at the character greet with Mickey at the front of the park. Not sure if that was permanent, or just the way it was when we went through. We saw her in the circus tent in the new fantasyland area, near dumbo.
I think Minnie's new place is in the circus tent, from what I have read.
It sounded like Mickey, plus possibly a member from a rotating cast of other friends would be at the front of the park. So, it's possible she may show up there, but I would only count on Mickey in the front.
