Taking our very medically complex princess on her first trip to disney!

[terratalking]

I hope I am posting in the right place! I've been reading through the boards for a few weeks now ever since my 4 year old Princess said "someday I want to meet Cinderella and Minnie"...NEVER thinking we would actually be able to make it!
My wonderful husband sat me down yesterday and said " I had hoped to surprise you all, but then i realized there are a LOT of logistics to getting Kendall and all her stuff down there, so we better start planning now!"

So off we go!!! There is SO MUCH to coordinate from a medical standpoint - but oh it is going to be SO WORTH IT to see the looks on ALL my babies' faces! This will be their Christmas present - pretty much the only thing! - so they will find out on Christmas morning, and then we will leave about a week later!

I need a LOT of help! I'd love to do a Pre-Trip report like iv'e seen others do, so i can remember EVERY single detail this trip! It is very likely that it will be our only chance to ever take them all - from both a financial standpoint as well as a medical one. Of course i HOPE it isn't - but I don't wanna take any chances! Gotta make this the best it can possibly be!

Besides the PTR, I need help figuring out what do we do, how do we plan our days to get the most out of them, what rides are good for kiddo's like her (and her sisters!), and most importantly - HOW do we make sure that she gets to meet Cinderella and Minnie?!?!?!?

I'm sure I'll put more of the details into our PTR - but as background - Kendall is the youngest of my four daughters and has struggled since birth with breathing issues/respiratory weakness, hypotonia, global developmental delays, GI issues, bladder/kidney issues, immune system issues, dysautonomia and in general is a hot mess due to all her diagnoses! Her sisters struggle with their own minor issues (visual processing and hearing processing disorders, my 8 year old has a newly discovered tumor growing on her spine that requires frequent monitoring, my 5 year old had her tonsils and adenoids removed earlier this year in an attempt to relieve her constant illnesses) - and all in all, it's been a doozy of a year medically! Kendall has been hospitalized for the better part of the month every month since July, and even planning this trip has me holding my breath that she will actually be WELL enough to go!
But we have heard it is such a magical place, and are so hopeful that this trip is just what she needs to continue fighting the way she does day in and day out.

So - logistics:
Ben (my husband) and the 3 big girls are driving down on Saturday January 5th with all of Kendall's medical equipment/wheelchair/etc. (We only had enough money for my and Kendall's plane tickets, and she would never endure a 24 hour road trip from Chicago!) We will fly down to Orlando on January 6th , and be at Disney Sunday, Monday and Tuesday. We are staying at a Hilton property that is on Disney property *I think it's called Lake Buena Vista or something* - again because my husband had points for a couple nights there. I believe we will only be able to get tickets for Monday/Tuesday (inlaws are buying them as our christmas present). So we need to cram a LOT into two days!!

And that's about all I know right now - so I need help with EVERYTHING! And ANYTHING that you can tell me about how to do this!

Thank you so much for any help or insights anyone has on doing Disney with a kiddo with special needs! If you'd like to read more about Kendall, my blog is www -dot -terratalking -dot-com.


Terra

 

[JeanfromBNA]

First, I would get the Unofficial Guide to Walt Disney World. and start reading relevant sections.

You say that you will only be staying from the 6th through the 8th. Are the dates firm? What about the hotel? I've heard that Lake Buena Vista is very nice, but would you be interested in an option on property, or further off property for the right price?

 

[Nevada Jen]

Read the stickies in the forum but the first thing that comes to mind is that I probably would not take her wheelchair. If you are going to use a stroller to get through the airport, I would plan on using that at the parks. Pushing a child size wheel chair in the parks will make you real sore real quick! Sounds like you have a good plan.

As to what to do, it depends what your girls are into as to where you want to focus. If it were my family, I would do a day at Magic Kindgom and a day at Epcot. I think Animal Kindom is not particularly friendly to kids with disabilities in terms of the terrain, the activities and the rides. Its always been hard for us to access. Epcot might be boring for your girls. Its definately more educational. Good luck with your planning.

 

[LockShockBarrel]

This will come across negative but please understand where it comes from.

Spending lots of time on these boards (and if you do, you'll probably notice it) that a lot of first timers (or first timers with kids) will just try to cram too much in. It makes sense, especially if you think it's the only time you'll be able to go, for whatever reason, or just that you're so excited and there's so much you want to see and do. More often than not, even with planning and checking details over and over, something will happen where expectations aren't met. What results? Meltdowns and headaches for all involved .

I would urge you to try to step outside of your excitement, just for a little bit, and be as objective as possible. In 2 days, you simply aren't going to get everything done. With 4 kids at the ages you mention plus the issues, it's a lot to expect for your kids and yourselves.

Ask your girls what's the most important things to them, a certain ride, a character they really want to see and focus on that. But don't forget yourself and your husband. Try to shoot for the top 4 or 5 things that you consider must dos and plan around them. Then consider everything else icing on the cake. Please don't put so much pressure on yourselves that you forget to just enjoy your surroundings. It happens to everyone at some point, be it someone who has issues or not. Have a family meeting, or at some point have the discussion with your daughters that it's going to be fun and amazing and exciting and you'll do whatever you can but they all have to remember that everyone gets a turn, everyone has something special they want to see and everyone is important.

I really don't say this to skew your view of your perfect trip. You are free to do whatever you feel is best. I just don't want any of you to come home disappointed or upset. Under promise, and over deliver.

 

[peemagg]

I think if it were me and the ages of the girls, and the amount of time that you are going to be there, I would only do one park for both days. I would suggest Magic Kingdom only.

By using both days in the one park, it gives you more time to slow down and see and do more that is offered there. Doing this allows you to kind of split the park in half and do part of it one day and the other part the next day.

I agree with LockShockBarrel, that it can't all be seen and done in the short time that you are there. In fact I have been to Disney for a full week at a time for the last 7 years and have yet to see it all and do it all. There is something new each trip. Don't try and cram it all in. You will only all end up miserable!

 

[MSSANDRA]

First, prayers that this will be a wonderful and memory making trip! We like January and the crowd should be much lower by the time you get there. Here are some thoughts:

-January can be cold...not cool but below freezing when you head to the parks cold. It might not be, but last year it was. Lots of layers are necessary!

-Since you are driving, take foods for a quick breakfast at least in the room. If you need a mid-day break, you may even grab lunch there. Cary snacks into the parks if you need to save even more money.

-Share meals you do buy. Plenty big to share.

-Do MK for two days. SOOOO much to do there and cheaper not to add the hopper pass.

-Consider if special accommodations for any of the children would make the trip easier. If yes, consider a Guest Assistance card.

-Drive to the parks, not use the shuttle. You need to be able to get back to the room in a hurry if needed.

-Consider renting strollers for any of the girls that it will make the trip easier for.....ignore any person here than says otherwise.

Take lots of picture and make some memories

 

[Piper]

The cost of the tickets decreases a lot for every day. For the 6 of you 3 days is only $380 more, 4 is $460 more and 5 is $536 more. You can add the extra days at the resort. I know it seems a lot of money, but maybe you can get someone else to chip in on the tickets. I wouldn't want to try to take a "trip of a lifetime" in only 2 days with a healthy child, much less with several that have medical problems.

I would also bring a double stroller. It sounds as though your children will need it. You should go to Guest services as soon as you get to the parks and tell them that you will need a stroller as a wheelchair tag. Then you can take the stroller in lines with you. Also let them know that it is your first visit and you are not sure exactly what your children's needs are. Let them know that more than one is affected. You will need to take your children with you to Guest Services.

Do read the FAQs at the top of this page. You will get a lot of information. Good luck and have fun.

 

[SueM in MN]

Not time to post much, but...
1) if she has her own wheelchair, I would bring that on the plane with you. She is likely to be more comfortable in her own familiar chair. I would not be concerned about pushing it unless it is one of the very low to the ground chairs that have low push handles. A wheelchair is no harder to push than a stroller and having her own would be one less thing to rent.
Plus, you will have it for getting around in the airport. You can gate check it and wheelchairs do not cost extra in baggage fees or count toward a bag fee.

2) I agree it would be better to do one park well than be rushing around trying to see a lot of things.

3) Have you considered a wish trip for her through Make a Wish or a similar wish granting organization. Children with life threatening conditions qualify ( contrary to what many people think, it does not have to be a terminal illness).

 

[mayaflysmama]

I just checked out your blog and we also see Dr G! We have done Disney a few times and is is very doable with a medically complex kiddo. Biggest thing is to be prepared and set goals for what is really important. I agree with only two days I'd stick with just the Magic Kingdom so you can take it at a pace your girls can handle. If you have any specific questions post them as someone here has most likely "been there, done that" I've gotten a lot of help in planning from this board. Nobody has your exact situation, but collectively there is some great info here. Have a great trip!

 

[GusGus77]

I would agree if you only have 2 days do them both at MK. It will make it less stressful and most likely the one you will enjoy the most. I am not sure about meeting the characters. Normally I would suggest character meals to make it easier- cinderella's royal table for the princesses and chef mickey's for Minnie Mouse. I don't know that it is doable on your budget, though. It would make meeting those characters guaranteed without the stress though.

I hope your family has a magical trip!

 

[ttintagel]

touringplans.com and easywdw.com are both good sites with a lot of info about which days different parks are likely to be crowded, times of day to ride certain rides,etc.

I concur with two days in the Magic Kingdom. You STILL probably won't see everything worth seeing! I also agree with those who say to take it slow and not worry about squeezing in the maximum amount of activity.

Cinderella and other princesses have an indoor greeting area in the Town Square Theater in Main Street USA. You can get a FASTPASS for that and for meeting Mickey in the same building.

Minnie will be greeting in the Pete's Silly Sideshow tent in the Storybook Circus area of Fantasyland.

I believe Minnie greets in other parks,too - kennythepirate.com is a great unofficial site with information about when and where to meet characters.

 

[terratalking]

Oh you guys are amazing!! Thank you so much for ALL of the input! none of it is taken badly at all - it is EXACTLY what I needed to hear! I don't have time to write a long reply - but wanted to thank you all for the insights and help! Now I can at least put my efforts into planning ONE park visit and seeing what we can handle there! Keep the great ideas coming! I will be checking out all the other sites posted!

To SueM In MN - I have thought about that - and I'm really torn. I would never want to think of my child as being "life-threatening" (even though really, I know every day of her life is a gift considering all she is fighting through and the fact that we have a very high-level hospital room as her bedroom!). I think it's more of an emotional thing from my momma's heart vs the logistics of her getting a wish. I would never self-refer. But if her medical team felt it was an appropriate thing, I would do it in a heartbeat.

Thank you again everyone!

terra

 

[peemagg]

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.

 

[akcire]

I'm in Naperville. If you need help with logistics just send me a pm and we can talk. I won't post my phone number in the open forum but I'd be glad to share it privately. I go to Disney often, this year we travelled 4 times so I am pretty well versed (we travel for work conferences).

What I think you need to realize if you haven't already is the sheer size of WDW, even just the Magic Kingdom. Seriously the journey from your parking spot to the entrance is a lot for many people.

Mt very best advise is you wait and plan a week or longer trip. If you do a wish trip they often put families at Give Kids the World. GKTW is essentially a suite style medical hotel or they may get you a room on property that would be less daily commuting.

My friend has a medically challenged child and years ago I travelled with them just to help. There were many days when we entered the park rode two 90 second rides and left.

I really want you to have a great trip. With only two days I think you will be running so hard you won't even imagine. Also if someone gets sick while there you will have other problems.

Let me know if I can help answer questions.

 

[Bete]

Keep in mind there is a first aid station in each park. If you need a rest or need to regroup someway, this may be the place to do so. For MK the first aid center is located passed Main St. You take a left and you will see a restroom area followed by the center. It's on the way to the Crystal Palace restaurant. If you get to the restaurant you have gone too far.

I'm a little concerned with you being alone with your daughter at the airport. Has she flown before? Are you medically prepared for whatever could happen on the plane? Hubby has her supplies in the car. I don't want you to feel uncomfortable, here; I just want you prepared in the very best way. Hand in hand, have you travelled anywhere before with the family; so, you know what you are getting into, here? For example have you been to a zoo with the family? How was it?

There are many videos on u tube and such that can show you the rides at each park. Also, there are height restrictions and so forth for each ride. I would review all of this so you don't waste precious park time and someone saying you can't do the ride. There's a disabilities guide available from Disney. I would do a lot of homework and have a very solid plan, but be flexible at the same time. Sometimes, it's better to skip a ride with an hour wait; so, you can do three other rides instead without long waits.

 

[KPeveler]

I want to second the suggestion of looking into Make A Wish - you get services that are not available to the general population. For example, most people stay at Give Kids the World Village, where they are equipped to handle a medically complex child.

You should know there is a standard Meet and Greet on Main Street for Mickey and Minnie. Check with CMs at the entrance of the line to make sure Minnie is there.

Also, there will be a standard Meet and Greet somewhere for princesses, and again, a CM will likely be able to tell you if Cinderella is there.

I would have each child pick her Number One thing to do, so that no one goes home disappointed or feels left out. This means that everyone gets a turn and you do not drive yourself crazy going in circles in the park.

I also think you should only do Magic Kingdom, given the ages of the kids. If you try to do too much, you will just be tired and disappointed and crazy. Come up with a plan and try to relax and enjoy!

 

[Shelly F - Ohio]

You might want to check out Undercover Tourist for tickets. They are highly reputable company. Lots of us on here have purchased tickets from them including me. In fact this is the only place I get our tickets from because they have great deals. They currently have a deal if you buy a 3 day ticket you get the 4th day free! And the different in price is that its only $80 more for this deal compared to buying a 2 day ticket from Disney. So for $256 dollars you can get 4 days to visit the parks verses $176 for a two day ticket.

Here is their link

http://www.undercovertourist.com/orlando/attractions/tickets.html

Also subscribe to the Mousesavers newsletter and they often times have good discounts

here is the link

http://www.mousesavers.com/

 

[kellyw8863]

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!

 

[terratalking]

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). 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? I've heard about the "refillable cups" also - is that a good recommendation?

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!)

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).

Oh so many questions....

Thank you for letting me just keep getting them out here so i have my own "list" to refer back to!

I may have a conversation with her doctors next week about MAW. Since I have to still get clearance for her to be able to travel, it is probably a good conversation to have. Thank you for those who are encouraging me to look into it. I appreciate the information!

Thank you so much!

Terra

 

[terratalking]

Keep in mind there is a first aid station in each park. If you need a rest or need to regroup someway, this may be the place to do so. For MK the first aid center is located passed Main St. You take a left and you will see a restroom area followed by the center. It's on the way to the Crystal Palace restaurant. If you get to the restaurant you have gone too far.

I'm a little concerned with you being alone with your daughter at the airport. Has she flown before? Are you medically prepared for whatever could happen on the plane? Hubby has her supplies in the car. I don't want you to feel uncomfortable, here; I just want you prepared in the very best way. Hand in hand, have you travelled anywhere before with the family; so, you know what you are getting into, here? For example have you been to a zoo with the family? How was it?

There are many videos on u tube and such that can show you the rides at each park. Also, there are height restrictions and so forth for each ride. I would review all of this so you don't waste precious park time and someone saying you can't do the ride. There's a disabilities guide available from Disney. I would do a lot of homework and have a very solid plan, but be flexible at the same time. Sometimes, it's better to skip a ride with an hour wait; so, you can do three other rides instead without long waits.

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