Our warrior princess wishes for the World

Discussion in 'Completed Trip Reports' started by hotmamac, Jun 30, 2008.

  1. hotmamac

    hotmamac Mouseketeer

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    Well, I guess this is the start of our Pre-trip report.
    I still feel like this might be a little too early, but my planning is at a semi-stand still and Disney World is all we can think and talk about so this seems like a good way to "vent".
    So here goes.

    Cast of characters:

    DD: Ali (age - almost 4) our wish child. Ali was always a fussy baby but I didn't really think much of it until she was 5 months old and started having a type of seizure called infantile spasms. We took her to Children's Hospital in Pittsburgh. I remember being in the emergency room talking to DH about what we were going to get to eat "on the way home" because it never dawned on either of us that this wasn't just something they could fix in the ER. Needless to say, we were admitted. Ali was taken to the Neurology floor while they did several tests. A few days late two doctors came in and told us to sit down because the news "was going to be rough". I thought for sure they were going to tell me that my baby girl wouldn't even make it to her first birthday. The dx was Tuberous Sclerosis. As they were talking about the variety of problems Ali could have over the course of her life, they finally told me it wasn't fatal. I wanted to laugh, because as long as she wasnt' going to die, I didn't think it was all that "rough". Anything else I can handle. I couldn't handle losing her.
    Over the past few years, Ali has had good times and bad. She went months without any seizures at all, then started having heavy seizure activity which medication wasn't fixing. Finally, we found the right combo of medications and she has been seizure free for 7 months. She's developing in leaps and bounds and has amazed all of us.

    DS: Wil (age 6 1/2) My little man is a stellar big brother. He loves everyone and only wants to make a friend every where he goes. He's super smart and funny. He takes excellent care of his sister and always makes sure she is included. He loves Toy Story, Star Wars and Spongebob.

    DH: Vaughn ( age 33) he's a trainer for the Picture People and travels alot. When DH and I were married, we went to WDW for our honeymoon. DH told anyone who would listen that he was only going to make me happy. He used to complain all the time that he couldn't wear any of my t-shirts or sweatshirts because they were all Mickey or Disney. We hadn't even been in Disney World for one whole day when DH bought a shirt with a picture of Tigger on it and wore it throughout our vacation. Even he was amazed at the magic Disney can work.

    Me: Misty (age 33) I work 24/7 as a mom, but also 4-6 hours a week at Janie and Jack, a kids clothing store. I used to work for our local Disney Store, back when it was still owned by the Disney Company and I am a total Disney fanatic to say the least.

    Also included in this trip on their own dime are:

    DA (my sister) Casey (aka KK age 32): KK is a high school science teacher in Pittsburgh and assists in spoiling my children. She's a world traveler but hasn't been to THE World since 1993. She is staying at Port Orleans Riverside with...
    DM (my mom) Julie (aka Ta - age can't be diclosed onaccounta...on account of if I disclose it she'll beat me)
    Supreme spoiler of my children. Also hasn't been to the World since 1993.
    My kids are very close to my family and most special events are done with them as well as some of my mom's sisters and my cousins. It takes a village.

    That's us in a nutshell.

    To be continued...
     
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  3. Bill_Lin

    Bill_Lin Grateful to God

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    Great start. Thank you for the heart-felt sharing.

    I am looking forward to hearing more from you Misty.

    Bill :yay:
     
  4. hotmamac

    hotmamac Mouseketeer

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    The start of something beautiful...
    I never thought DD would be eligible for a Wish since her condition isn't fatal. I thought MAW was for terminal children. But one sunny Saturday, we went to a fundrasing walk for TS and learned that another TS family was on their MAW to Disney. Once Ali was old enough, I refered her and low and behold, she was approved for a wish.
    Now at the time, Ali was having such severe seizures, she couldn't have made a wish to go across the street so we just put it on hold. She was also so desperately clingy to me, that even going to the mall was tough. Our doctors took Ali off of all her medications (that weren't helping anyway) and allowed time for her body to detox. Then in November 2007, they put her back on a combo of Lamictal and Clonipin and the stars must have alligned because very soon, Ali was seizure free.
    She was a different child. She was smiling and happy and didn't mind if I walked into the kitchen while she was in the living room. And suddenly it was ok if Daddy read the bedtime story, instead of it always having to be me.
    She started learning fast and furious and started using more and more words.
    She goes to a DART preschool which is a preschool for special children with special issues and she liked going now.
    So I immediately thought of her wish. I wanted to strike while the iron was hot, so to speak. With TS, seizures could flare up at anytime and all the old problems could pop back up so I want to make all her moments count. God willing, she will continue on this beautiful path.
    Ali does have some issues with communicating and responding to questions so I was worried how we would let someone know what Ali wanted.
    I knew without question, that Ali would want to go to Disney. She loves not only the princesses, but all the Disney characters. Her current favorite seems to be Lightning McQueen. She walks around saying "a-chow". She loves to dress up as the princesses and is captivated by the movies.
    We started asking Ali what she would wish for and she would say "I see Din-eze".

    Our volunteers came and brought presents for both kids and spent a wonderful evening while we discussed Ali's wish. Lucky for me I had already found the Wish Trippers...Unite thread and was fluent in all things MAW/Disney related. I actually felt like I knew more than our volunteers.

    It was a few weeks until we found out that Ali's trip was granted. We had made the request for a Disney only trip and to stay on property, but alas, it was not to be. They are allowing us one extra Disney day and we will be staying at GKTW. We intend to buy one more day on our own and do strictly Disney. We are VERY excited!
    My son has already been on the GKTW web site and is thrilled with the prospect of free ice cream anytime he wants. Ali will enjoy it where ever she is.

    I have lots more to say, but Mommy duties are calling.

    To be continued...
     
  5. Bill_Lin

    Bill_Lin Grateful to God

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    Misty, I am getting really excited for your trip and for Ali and the crew.

    That is great that you received an extra Disney Day. Make sure and get your extra day at your own expense approved. Ours was turned down for local chapter policy reasons.

    I am happy that you are staying at GKTW, the most loving place. I assume you will have US/ IO and Sea World Tickets?

    DHS will have to be a big focus, with CARS and the parade there. Try to get a breakfast or lunch at Cinderella's Royal Table, it is so darling for the little Princesses to experience a meal in the castle.

    If I was going to take a girl that age to Orlando, I would want to hit the following to be sure:

    MK- Castle Meal, Winnie the Pooh, Peter Pan, Small World (seriously), Country Bears, Dumbo, Alladin Carpets, Toon Town Fair (Mickey-Minnie), Monsters Inc. (NOT STITCH!), Jack Sparrow greet, Philharmagic, Snow White. If Star Tours is not too intense, try that. My DD got off the ride and was looking everywhere for Ewoks. It was so cute I HAD to buy her one.

    AK- Safari!!!!, Kali River, Animal Trails, boneyard, Lion King Festival, Triceratops Spin (like Dumbo), Nemo Show.

    DHS- Beauty and the Beast Musical, Voyage of the Little Mermaid, Muppets 3-D, Narnia set, Fantasmic

    Epcot- The Seas with Nemo, Turtle Talk with Crush, Soarin', Journey into Imagination with Figment, 3 Caballeros in the Mexico Pyramid, Princess greet in France.

    Islands of Adventure- Cat in the Hat, Carouseusal, One Fish Two Fish, Popeye's Boat, Spiderman greet, not sure if the ride might be too intense.

    Universal Studios- Shrek 3-D, Donkey Shrek Greet, E.T., Curious George water play area, Barney show.

    Sea World- Arctic Ride, Dolphin Feed, Seal Feed, Penguins, Manatees, Shamu Show, Dolphin Show, Seal Show. Atlantis is pretty steep and fast.

    At GKTW be sure to take in the Christmas Party and Pirates and Princesses Party.
    http://www.gktw.org/pre/Village/schedule.asp?p=village

    She will love the Carousel, exploring and dressing up in the Castle of Miracles, Mini Putt Golf, the Train Rides, characters who visit GKTW and ICE CREAM!!!

    Bill
     
  6. GoofyDoo

    GoofyDoo Missing Orlando...

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    Awesome report so far ~ I can't wait to hear more!!! My son qualified through MAW because of a seizure disorder, although he does have very mild cerebral palsy, too. I know how the burden is lifted when those meds work!! Keep those details coming as you can....
     
  7. bex271

    bex271 Mouseketeer

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    can't wait for more

    becca
     
  8. Iluvmickeymouse!

    Iluvmickeymouse! Proud mama to a DD who beat HLH

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    yay another MAW trip report!!!!! Awesome start...I can't wait to read more!!! popcorn::
     
  9. hotmamac

    hotmamac Mouseketeer

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    So where was I?

    Once Ali had officially made her wish, our biggest concern was getting the dates we wanted. As I mentioned, my mom and sister are going along on our trip (they are staying at POR Riverside and are paying their own way). My sister is a high school science teacher at a local "charter" school and they go on tri-mesters. She is off the months of April, August, and December and doesn't get any other vacation time so we had to go during one of those months.
    August was out from the get go, because I just don't like to be too hot. April was too soon and I couldn't see waiting another whole year, so we decided on December. I had always wanted to go see it decorated for the holidays.
    Once we got the confirmation of our dates, my DS and DM made their reservations.

    I should also say that I am an obsessive researcher. I love to plan things, especially when they are so far away. I liken Disney planning to wedding planning. There's lots to do right away and then you get into this holding pattern where you already have the major things booked and it's really too soon to do the detail work. These boards have been a life saver. They keep the excitement new and bubbling.
    So I have been on here constantly and I have purchased three guide books to Disney (the official, the unofficial, and the complete). I have read all of them cover to cover and discussed them at length with anyone who will listen. I'm quite sure that the whole gang is sick of hearing me talk about it. I've even caught my 6 year old rolling his eyes when I begin the tales of Disney trips past. :rotfl:
    I'm not so bad as to plan everything down to the last minute. I'll make some basic plans, but will probably toss everything out the minute we get there. It's more something to kill time between now and December.

    :dance3:
     
  10. Iluvmickeymouse!

    Iluvmickeymouse! Proud mama to a DD who beat HLH

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    I love :love: WDW at christmas time! You are going to absolutely enjoy it!!!!
     
  11. hotmamac

    hotmamac Mouseketeer

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    I wanted to thank you all for your kind words.
    Doing one of these reports is a little surreal. I was thinking, who's really going to be interested in our story? So thank you all for your encouragement.

    Bill - thanks for the run down on your faves. Your trip was one of the ones that inspired me:hug:
     
  12. GoofyDoo

    GoofyDoo Missing Orlando...

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    More, more, more!!! I'm in the same boat as you--just waiting for trip time to roll around. So all I really ever do is get on the DIS boards to kill time! Which Disney guide is your favorite? I have the Complete Guide and really like it a lot (it has great pics) but wonder what I'm missing in the others.

    Looking forward to more of your trip report. :)
     
  13. amytheobald

    amytheobald Mouseketeer

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    I'm along for this trip! Disney is a magical place, I m glad your Ali will get to experience it!
     
  14. Bill_Lin

    Bill_Lin Grateful to God

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    Misty,

    Your TR is really fun to read. Keep the posts coming. We like to here everything that you are doing to plan or get ready.

    Birnbaum's touring plans were great, but a tad irrelevant to Wish Trippers, since the line issue affects us minimally. Still, I would study it to get the flavor of areas and rides and to get the low down on eating places.

    HAVE FUN!
     
  15. hotmamac

    hotmamac Mouseketeer

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    Hi everyone ~
    Thanks again for all your words of encouragement! It gives me that warm fuzzy feeling!:hippie: :hippie:
    I really mean that.

    Here's my take on the guides...
    Official = very positive..polyanna type reviews
    Unofficial = kind of on the harsh side...a little negative.
    Complete = in the middle...loves Disney, but has a realistic spin.

    They're all fun to read and reading all three has given me the best take on the whole thing.

    I've been to Disney several times in the past and worked in the Disney Store when it was still company owned so I feel like I have a very good grasp on the whole thing, but I've never gone with kids. And really, out of the four other times I've been there, only one was as a small child. So this really will be a whole new experience for all of us. The kids have never been and we've never been with kids. It's going to be crazy, but I'm looking forward to every insane minute!!!

    Ali can get to be a little bit of a handful. TS is similar to Autism in several ways, and unfortunately one of those ways is the harsh tantrums. They've gotten better, but sometimes with too much stimulation, she can get cranky. But then again, so can I. :rolleyes:

    So, anyway...

    I haven't made any ADR's yet, but I intend to this week. I think we're going to try to get over to the 1900 Park Cafe at Grand Floridian for the character dinner or breakfast (or both if I am feeling particularly nutty). Other places I would love to eat would be the Whispering Canyon at the WL and Le Cellier or Teppan Edo at Japan in Epcot. I have to make my final decisions soon I guess.

    We were going to get Ali an appointment at the Bibbidi Bobbidi Boutique, but she suddenly has a great aversion to having her hair touched. It's a battle to wash and brush her hair, so we're going to save that for when she's older.

    We're planning on doing Christmas at GKTW, but we won't be there for the Pirates and Princess party :sad2:

    Well, that's going to have to be all for now.
    I'll be back soon.

    Love to all,
    Misty
     
  16. bigdisgrandma

    bigdisgrandma Mouseketeer

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    Misty,
    Our family is doing the same thing for my granddaughter's MAW trip in September. The Wish family is staying at GKTW and the other 5 of us are staying at POR. I will let you know how our coordination of two trips into one works out.

    We are doing the MNSSHP and BBB for the girls. Our dining plans are a little tough because of free dining but everyone has been so helpful.

    I can't wait to read more about your plans

    Denise
     
  17. hotmamac

    hotmamac Mouseketeer

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    Hey Denise ~
    Great minds think alike, huh? :thumbsup2

    Are you all staying at Riverside or French Quarter? My mom and sis are staying at Riverside. I'm hoping to get a minivan as our rental vehicle so we could pick them up now and again if we need to get somewhere.

    When I went on my honeymoon, we went in September and it was a GREAT time to go. Not very crowded and still nice weather.

    Take care!
    Misty
     
  18. AmberGreenawalt

    AmberGreenawalt Mouseketeer

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    Hi Misty! I got your PM. I can't reply to you until I have "10" posts (I'm getting there!) Sebastian's Wish Trip is going to be December 6th-14th 2008. It looks like we'll be overlapping by a day. COOL! We'll be checking out of GKTW on the 11th though and moving over to another hotel so we can extend ouR trip. I'm looking forward to swapping info with you :) I enjoyed your trip report. I hope to get a trip report going soon too.
     
  19. bigdisgrandma

    bigdisgrandma Mouseketeer

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    :goodvibes We do have great minds don't we! We are staying in two rooms at PORiverside because there are 5 of us. My husband and I stayed there for our 30 anniversary 6 years ago and loved it. I love the boat ride to DTD.

    Can't wait to hear more.

    Have a great evening.
    Denise
     
  20. hotmamac

    hotmamac Mouseketeer

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    Well, I have been woefully negligent in keeping up with my trip report. Truth is, I haven't been on the boards in a while. When I was a kid, summer felt long and lazy, now as an adult, it feels fast and furious. :confused3

    So some news on the Disney front:
    I finally made ADR's!!! I'm way excited! We booked dinner at the Cinderella Gala buffet at Grand Floridian, lunch at Le Cellier in Epcot and the Supercalifragilistic Breakfast back at the Grand Floridian. Except for the character dinner, I'm still open to changes. I like to plan, but I'm a very go with the flow kind of gal. Go figure.

    Also, we've been contacted by the DisBoutiquers and they are offering to do the big give for Ali and Wil! I'm speechless. Anyone who knows me, knows I have never, in my life, been rendered speechless, but my heart has swelled up so big it got in the way of my throat. I'm touched in a way that words can't even express. My son, however, is not speechless. They asked for a favorite character and my son keeps coming up with additional "favorites". He'll say "Mummy tell them that I like Mickey too. And Star Wars. And the Haunted Mansion". Now, mind you, he's never been to Disney yet, and has no idea what the Haunted Mansion really is. :rotfl: Well he knows what it is, but he doesn't know if it's his favorite yet. He's so cute.

    Well, I have to go make dinner. I'll try to get back here later, although the above is all the real news I have for now.

    Take care everyone!
    Misty
     
  21. GoofyDoo

    GoofyDoo Missing Orlando...

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    Congrats on making those ADRs and on GETTING TO BE PART OF THE BIG GIVE!!!! Those DISboutiquers are just angels to be making our trips so special! Their work is absolutely magical ~ my kids are getting positively spoiled with all the pixie dust (and so am I, because I have always so enjoyed seeing my kids look cute!!). Keep us posted!!!
    ~Amy
     

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