Jaydens Wish trip - September 26th-October 2nd - MAW/GKTW

Discussion in 'Completed Trip Reports' started by Hurwitzfamily04, Aug 8, 2009.

  1. Hurwitzfamily04

    Hurwitzfamily04 The love of a family is life's greatest blessing

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    I am totally 100% new to this whole website..so bare with me. :upsidedow

    I'd like to introduce myself first. My name is Erika. I am a 19 year old wife and mother to a wonderful family. Only 19?!?..is probably what you are all thinking..and yes, I started early, and have come a long way, but I wouldn't change what I have for the world. And I guess now would be a great way to introduce the rest of the cast..

    Gary-My husband who is 22 years old. He is full of humor and always has some way or another to make the children laugh so hard they have tears running down their faces.

    Jayden (the wish child)-My super sweet angel. He is 4 years old and adorable.

    Gabberiella-My fallen angel. lol. She is 2 years old..yes yes terrible twos my goodness.


    So that's my wonderful family..

    I cannot believe that my son's wish trip is just around the corner. His chance to see Mickey Mouse in person! And for my daughter..a hug from "Mimmy" (Minnie Mouse)

    About my son:
    My son Jayden, was diagnosed at 1 year old is CP. From the time he was born until his diagnosis, we knew something was different with him. He matured slower than normal. He just didn't hit his milestones with the rest of the kids his age. The family doctor said that everything was normal, he must have just been developing slower, but he would catch up with some time. As time passed and he didn't improve he was taken to a specialist and then was diagnosed with CP. He then was having some mild seizures, so he was taken to a neurologist and given a MRI. The MRI showed large white masses in and throughout his brain. He was then diagnosed with what is called a Leukodyptrophy. Specifically Vander Knapps Disease. His diagnosis is not yet final because people with Vander Knapps tend to have a larger head size compared to those without this disease. My son, has a normal head size, which is very rare. In fact, no doctor that we have seen so far has seen or heard anything like it before. The doctors have said that my son should progress should decrease, but he just keeps getting stronger and able to do more for himself. He now is in preschool and is learning slowly but certainly, how to walk with a walker and use sign language to communicate (he more frequently uses his wheelchair). He was just recently diagnosed with hip disphasia. He is going strong and working hard to meet his goals. He is improving with each day that passes and is extremely bright. He is definitely looking forward to his trip to Disney World!

    Jaydens family doctor has just been wonderful to Jayden. Whenever he is sick she will see him right away, and she really has a great and sincere heart. She actually is the one who referred Jayden to the Make a Wish Foundation. She really is a great woman.

    And now we are all booked and ready to enjoy a brilliant week in Orlando Florida, visiting Micky, Minnie, Donald, and Goofy!


    On our trip it will just be us four! A nice family vacation, all planned around my first born sweetie.

    So thats all for now folks, about a month and a half away, and it's time to start planning. Any comments or suggestions are greatly appreciated! :)

    More to come...
     
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  3. MomTo4+more

    MomTo4+more Mouseketeer

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    Welcome!! I am glad you found these boards! They are full of helpful information and fantastic people. I have been planning my son's wish trip for a little over a month now and have felt so welcomed and encouraged by these boards.

    Your trip is so soon! It will be here before you know it!

    Thanks for sharing your story with us! I look forward to reading more!
     
  4. Corrine 1973

    Corrine 1973 What do you mean I am not a princess, don't you se

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    Yeah!!!! Another wish tripper.

    Our family is going September 13-19th and boy are we excited. I can't wait to read more!!!

    Here is a link to the Wish Trippers United thread if you hadn't already found it.

    http://www.disboards.com/showthread.php?t=2039777

    I posted a link to your thread there (hope you don't mind.)

    You will get a lot of great info there and meet alot of great people.:cutie:
     
  5. Hurwitzfamily04

    Hurwitzfamily04 The love of a family is life's greatest blessing

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    Is it better to take my son's wheelchair with or use one they provide? I really just don't want anything to happen to his here at home..

    And do children sit in car seats on a plane? Sorry, I have never traveled by plane before. :)

    Is it a good idea to plan the trip day by day or not plan and do as we go? I just want my son to get the trip of his dreams and don't want him to miss out on anything.

    I'd like to post some pictures for you all but I am not really sure how to..Help Please? :yay: Appreciate it!
     
  6. SilverL

    SilverL My DH thinks he's Tarzan and I'm Jane. Go figure!

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    Hey,

    I'm so glad you guys get to go on this trip! I know it's going to be magical.

    I don't know the answers to all of your questions, but I do have some advice about planning.

    Since there is SO much to see and do at Disney World, I definitely recommend having some sort of plan. Look at a site like TouringPlans to help you figure out which parks will have the lowest crowds each day you're there. I think TourGuideMike has information like that as well. Try to visit the least crowded park each day.

    It's ideal to get to the park when it opens if you can manage it. Plan to visit the most crowded attractions first, and use the free FastPass system to eliminate wait times. TGM, TouringPlans, and RideMax can help you with these things.

    Keep in mind, however, that with young children any plans can be thrown out the window. Flexibility is key. Meltdowns at noon are not usually in anyone's plan, but if it happens, go to plan B. If your kids simply need to cool off and relax for a while, there are plenty of dark, air conditioned places like the Hall of Presidents or Carousel of Progress where you can take them for half an hour or so. Scheduling a midday sit down meal might be helpful as well. If it's a complete "we are so done with this" meltdown, then you can always catch the bus back to the hotel and get some pool time and maybe try to go back to the parks later.

    As far as meals go, if you want to have a sit down meal at the park, you probably want to call and make advanced dining reservations. I'm assuming you probably have free dining, so you get one table service credit per person per night. I suggest you use them! Also, if your kids want to see characters, then a great way to do it without waiting in lines is with character meals. However, if they're afraid of characters, there are plenty of other places to dine!

    We will be staying at Pop September 15-23rd, so we'll just miss you. I hope you have a magical trip!
     
  7. Corrine 1973

    Corrine 1973 What do you mean I am not a princess, don't you se

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    Ok, I can try to answer some of your questions but need to ask one first.

    Are you staying at Give Kids the World?

    It does make a diffrence. There are several parties through out the week that you might want to attend that will change planning. I know there is Christmas on Thursday night. The kids get to meet Santa Clause and each get a present. They also have snow (Bubbles)

    Remember that Wish trips are diffrent from other trips. Most of the time you get through the lines alot fast (some through exit some through fast pass) There a couple of wish lounges in the parks just for us to cool off and relax in.

    Some wish orginizations will pay for one special thing in the parks, so find out what they will do. We chose MNSSHP.

    As for planning I have it planned to what parks we will do each day (if you are at GKTW you will get 3 WDW tickets, 2 Universal Studios Tickets, and one to Sea world) and than have a list of what we must do, what we would like to do, and if there is time to. This way we will make sure we get to do everything we want to with out being to stress out.

    Car seats can be used on the planes but they need to be a 5 point harness and have an approval sticker.

    Not sure about the wheel chair, but if is made for him I would bring it. Otherwise you would have to rent one. You get one free in the parks but will not be able to have it outside of the parks.

    Hope I was able to help. Feel free to zip over to the wish tripers thread. All of your questions can be answered there.:thumbsup2

    There is also a place in this thread where it shows you how to post pics. I think it is in post one or two.:thumbsup2:thumbsup2
     
  8. Matt1026

    Matt1026 Mouseketeer

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    Just wanted to welcome you aboard. This is a great place to be! Everyone is so helpful and supportive. They have been such a help in planning our trip!!!
     
  9. Terry718

    Terry718 Mouseketeer

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    Hi Erika - I can't believe we will both be at GKTW at the same time!! I am so excited. Of course, you being 19 - you could be my daughter - but we don't need to get into that! :) I had my kids late in life which helps with the patience but not the stamina!

    I only joined these boards a week or so ago, so I am just a tad ahead of you on the planning stuff. But I know how it is traveling with special needs kids, plans usually go by the wayside and you kind of go with the flow. So I'd suggest you plan your days but make it very flexible. From what I hear, GKTW is a great place for the little ones and I imagine there will be days they won't want to leave. I'd also suggest you keep reading these boards, there is a wealth of information in the Wish Trippers Unite thread. I found myself spending hours just reading and learning so much.

    So I have to go bathe the kids right now, but I will check in on you - I can't tell you how excited I am that we are going the same time. We can count down together!!
     
  10. maroo

    maroo DIS Veteran

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    HI there!! :)

    I am Maroo and I try to help wish trips! :)

    I think my answer will be to take your wheelchair...but it sort of depends...

    What sort of equipment is on your wheelchair that will be hard to replicate? Does he use a plain w/c that folds up? Or does it have straps and aductors, etc that would be difficult to "request" on a wheelchair that you may rent.

    For the plane...are you going to have a layover or is it a straight flight?

    Are you staying at GKTW...this will certainly affect the answers to several of the questions. :)

    This is all great advice...for most trips. There are special things you will need to know and even MORE planning things that you may want to check out for your trip.

    I am going to make MY NOTES in PINK above regarding the things on this last post...

    I am tired from a long weekend...so I am going to sign off for now...but I will post more in a bit.
     
  11. Hurwitzfamily04

    Hurwitzfamily04 The love of a family is life's greatest blessing

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    Yes I will be staying at GKTW. I have been on their website and am so excited to be staying there. My son and I sat and looked at it together and you could tell he liked what he was seeing because he would throw his hands into the air and go "YAY!" which is very cute seeing as how he can't talk yet. (other than a few small words..he is now getting the hang out waving and saying 'Hi') His w/c is big but everything that is on his chair now is not needed. We are actually getting a fold up chair in the near future to transport better. I only have a little car :sad2: But I think as you all said, it might just be better and more of a convenience to bring his own so we can have it for outside the parks also. I would say a stroller but he is getting WAY to big for that. lol. I have not yet received the call and final visit from the MAW volunteers, so I am not really sure what they have planned or anything. They like it all to be a surprise for Jayden and the rest of the family..which kinda stinks in a way because I would like to know at least a little bit of what they have been planning. All I know so far are the dates we leave home and come home and our plane and that is pretty much it. I guess I have a lot of work and catching up to do. (I have been very busy..Jayden just got over being sick..but he is all better now)

    And thanks to all who gave me those websites. I will definitely be checking those out right away!!

    How do the meals work while at GKTW and WDW?
     
  12. Hurwitzfamily04

    Hurwitzfamily04 The love of a family is life's greatest blessing

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    I only have time to put up one picture before I go to work..and this is the first i came across...my daughter Gabbriella...
    [​IMG]
     
  13. maroo

    maroo DIS Veteran

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    I am so glad you are going to be staying at GKTW!

    I have a few thoughts...

    Consider renting a "special needs" stroller from an outside company.

    http://www.orlandostrollerrentals.com/baby-jogger-libery-push-chair.html

    This is a company that rents to some other DISers and they have said good things about them. The good thing is that it would be easier to push in the parks and he may be more comfy in one of these than a regular fold up wheelchair.

    I am not sure how MAW handles this...if they would be willing to rent one for you guys? If so, they deliver it to GKTW and come pick it up for you. They have one that carries kids up to 100 pounds.

    It seems like Jacob's family used one...so you can check out that trip report and you can see pictures of it in the parks...

    http://www.disboards.com/showthread.php?p=31223491

    I think they said that it was sorta hard to fold up, though? :confused3

    If you get a stroller, make sure you get a tag from Guest Relations that says "Use Stroller as a Wheelchair" and they will let you take it on the ride queues and you won't have to ever park it. You can keep it with you guys at all times like a regular wheelchair.

    Ok, that was a long thought. :rotfl:


    About the meals. GKTW offers lots of options.

    My favorite option is that you can have ice cream for breakfast, lunch and dinner. :rotfl: Seriously, the ice cream shop is open all day. ::yes::

    There is also the Gingerbread House. They serve breakfast and dinner. I have had both meals there and I liked breakfast the best! :)

    Then they have Katie's Kitchen - which is new, so you may not see it in some of the older TR's - and they offer Boston Market take out. You can get that for lunch or dinner.

    You can also order pizza to be delivered to your villa after 4:00. I have heard families say the pizza tasted GREAT and some that said it was...not so great. :confused3

    Each MAW chapter is different. Some give you a good bit of spending money that would cover a meal, even a nice one, in the parks each day. Some chapters don't give as much spending money and you sorta have to watch the budget carefully or pay out of pocket for your park meals.

    The parks all have a TON of options for eating...

    I think the best question there is what would your family want? Would you guys be interested in a character meal (where the characters come around to the tables and take pics with the kids)? Or would a very formal meal be something you are interested in? Or just a regular meal at a themed restaurant (there are lots)? Or just grab and go?

    www.allears.net has a good selection of menus and a good overview of the different types of restaurants.

    Don't stress over getting a reservation. Let me know what you are looking for and I will see if I can find it. I have messed with this reservation system so much that I might be able to find something for you even if everyone is saying there is nothing to be had. I also can "trade" on the DIS and try to get you guys something.

    You are going during "Free Dining"...so reservations may be a little hard to come by and you will need them to be able to do a "table service" or "sit down" meal.

    And that is just for Disney....someone else will have to pipe in here about Universal eating options. :)
     
  14. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    Depending on how often he uses it, and how well, you may want to bring his walker with him. I would not suggest bringing it to the parks (been there, done that, it's a pain and DD could not use it in the parks). It may be something he would use at GKTW village, at least in your villa.

    Since he is non-verbal, you may also want to look at this thread, which is about communication devices/pages. Even though he doesn't have a communication device, some people have printed the pages I posted for each park, laminated them and then the child could point to what they wanted to talk about.
    My DD also uses sign language, but she leaves off any parts that are hard for her, so is not very understandable for unfamiliar people.
    A couple things to think about:
    - GKTW can help you get a wheelchair (or possibly, special needs stroller, as maroo mentioned), but his own wheelchair may be more comfortable since he is used to it.
    - if it doesn't fold, how will you transport the wheelchair to the parks?
    - you may be able to get some of the pieces that are not needed removed before you go on your trip. That would help with transporting it and also leave less places to get damaged.
    - check with your child's Physical Therapist/Occupational Therapist. Some places have loan closets where you may be able to get an appropriate chair lent to you.
    - if you bring a wheelchair from home, you can transport it free of charge by airplane. There is no charge for mobility/medical equipment and it does not count toward your baggage allowance.
     
  15. Hurwitzfamily04

    Hurwitzfamily04 The love of a family is life's greatest blessing

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    So i have tried mutiple times to update but seeing as how i use my phone to access the internet and some how i keep losing all my hard work hehe i have not made it very far..so let me try this again..im going to post oftet so i can at least get a little up =)
     
  16. Hurwitzfamily04

    Hurwitzfamily04 The love of a family is life's greatest blessing

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    Ok, whew it worked!
    so our trip is sneaking up on us so fast..after us all waiting for over a year (i wanted the kids to get a tad bit older) we cant believe its almost here! my son is constantly signing 'duck' for donald duck. guess who his favorite is!! hehe and my daughter has been carrying disney books around everywhere for a week now..sayin 'mickey mommy, mimmy mommy!' which i find adorable.
     
  17. reyasmommy

    reyasmommy DIS Veteran

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    Im really excited to hear about how your trip goes! You're going to have a fabulous time! :banana:

    Your kids are SUPER adorable... I'm 25 weeks pregnant with a little boy that we're going to name Jayden!! We've always loved that name! :lovestruc
     
  18. Corrine 1973

    Corrine 1973 What do you mean I am not a princess, don't you se

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    I know what you mean. It seems like just yesterday when I looked at the calendar and thought it would never come and now it is only 19 days away.:scared1: And you are just get there just about a week after we leave.

    My 2 year old son Aidan (hey thats kinda close to jayden) keeps pointing out all the mickey's around the house and saying Mickey Mouse. It is two words that he is saying alot since there are Mickey's all over the house.:lmao:
     
  19. Hurwitzfamily04

    Hurwitzfamily04 The love of a family is life's greatest blessing

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    awww that is too cute!! yeah too bad we'll just miss u..the kids are lookin forward to meeting so many new ppl =)
     
  20. Hurwitzfamily04

    Hurwitzfamily04 The love of a family is life's greatest blessing

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    well thank you! i happen to think they are pretty cute myself =) lol. congrats on the pregnancy!! thats wonderful. no more for me for a looong time =) ive got my hands full lmao. but maybe eventually ;-)
     
  21. Hurwitzfamily04

    Hurwitzfamily04 The love of a family is life's greatest blessing

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    So i have been researching the wonderful WDW like carzy now and i feel like my head is going to pop with all the helpful things i am learning. we have hit some bumpy patches..for 1 gabbi had a throat infection with a fever of 104.4..scary!! then my smart husband accidently took off from the work the week after our vacation dates instead of the dates he actally needed! but he got it all sorted out..wheww!!!
     

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