Question for MAW families

[wendygrace]

who'syourmickey, be aware that GKTW gave Michael a cake for his bday. If your dd can't have cake, is there anything else she can have. Or is there a special type of cake she can have.

I don't know much about diet and WDW as we didn't have to deal with that particular issue too much but if you knew which restaurant you were doing the bday meal, could you order a special cake/cupcake for her? (WDW gives a child a cupcake if you don't order cake for bdays at sitdown meals). Anyways, they maybe able to accomodate.

I believe she's able to do milk and carrots, right? Any other foods? Or is that someone else?

 

[Who'syourMickey]

right now dd is on milk, pork, beef, carrot, quinoa, olive oil, strawberry, sugar, and cocoa. I don't think it is possible to make anything like a cake with those ingredients. Maybe cookies if we can add tapioca flour, maybe if we can add sweet potato and use it as a binder/egg replacer. Knox geletan can be used as an egg replacer. There is this great website kids with food allergies.com and once I get more foods on her list maybe we could figure out how to make a cake. Egg is the ingredient that makes cake what it is I think. so bummer.

 

[wendygrace]

You've got quite a list going! Yeah! Is there something in particular she likes instead of cake that you may be able to try her on sooner rather than later? And I'm not sure if egg is essential for cake. When you get closer you may try the chefs at Disney. They may be able to come up with something new and different. Good luck to you!

 

[dizneefamily5]

Iluvmickeymouse,

I just saw your questions about EMH! I asked about this when I was there and they (GKTW) said to ask at Guest Relations when we arrived. We did and were told that we were considered "off-site", but that it would not be a problem if we wanted to stay (we were asking about the late EMH). Of course, with the GKTW button, we had done everything and were pooped! So, we left. But don't count it out of your plans, especially if the heat of the day is too muh for you or your child! Have fun!!!

 

[Iluvmickeymouse!]

Iluvmickeymouse,

I just saw your questions about EMH! I asked about this when I was there and they (GKTW) said to ask at Guest Relations when we arrived. We did and were told that we were considered "off-site", but that it would not be a problem if we wanted to stay (we were asking about the late EMH). Of course, with the GKTW button, we had done everything and were pooped! So, we left. But don't count it out of your plans, especially if the heat of the day is too muh for you or your child! Have fun!!!

Thanks for the info! I am not sure about doing the EMH yet anyway. I was looking more at the preschool EMH they have going on in the mornings. Both my girls are early risers so I thought it would be a good time to get in Fantasyland!

 

[Momof2wCF]

Hi Karla!
I saw that we were going to be at GKTW at the same time, but I couldn't PM you for some reason. (probably *operator trouble* )
Anyway, I'm totally excited that you will also be there, thank you so much for the links, I was also wondering about EMH.
I enjoyed getting to know your family a little better, so until I get posted, just a brief overview of our situation. My DD is almost 9, and has cystic fibrosis like her older brother (17 yo). CF means that both of my kids have lung and digestive problems that are progressive. They have to take many meds (and IV antibiotics occasionally with hospital visits) to stay well. They also have gastrostomy tubes and take in a lot of their nutrition at night that way. They are both fairly healthy right now, but it's a constant battle to keep them that way. Most people can't look at them and tell what they go through, like you said in your post earlier. Kids are amazing.
So we will be at GKTW starting on the 21st, my husband, 17 yo DS, 9 yo DD, and me. My parents are staying at the Oak Plantation, which is near GKTW. They are going to help if my DS can't keep up with my DD's commando style
If you want, I'd like to try to meet up with you at GKTW.. Any suggestions you've heard for making that happen?
Thanks for PMing me, I'm very glad to meet you!
Kirsten
BTW, DD is the Wish child. DS got his wish for *lots of Legos* when he was 12..as well as a lot of flak from his sister about not choosing WDW like she wanted him too

 

[hotmamac]

DS's (4) wish trip is in early Dec. How soon will we find out if we're staying at GKTW? It sounds fantastic. We're driving down from PA so we plan to take 3 days coming and going. Wendy, your thread really is helping. I guess I'm mostly concerned about what I don't know that I should know.

Hi Alizesmom~
We're from Western PA and only just started our maw process. Everyone keeps saying each state is different so I thought I'd try and pick your brain since you're from PA too! BTW, my daughter's name is Ali also.
thanks!
misty

 

[alizesmom]

Hotmamac. Hi, I sent you a PM. Karen

 

[patticake3]

I'm new to this board, so hopefully I'm posting this question correctly! My son is 13 and we're considering Disney and/or Universal for his MAW trip. I'm wondering if he is too old stay at the hotel that most MAW kids stay at (not that there's an age limit, but is he too old to enjoy it)? If there is anyone out who has suggestions for a young teenager, I'd appreciate it! Thanks!

 

[jennydep]

We saw several teenagers there. I think he would enjoy it. There are two pools, a movie theater, video games, putt-putt. Not to mention the whirlpool tub in the kids' bathroom. I think it's a great place for a kid of any age to stay.

 

[Holly Sox]

My wish kid son will be 16 on Oct 11 and we'll be going to GKTW (which is the village for Wish families) in November. He is very excited about going and has checked out the web site numerous times. Granted, he has some delays and is quite paradoxical these days. He'll be checking out Gabriella in HS Musical and then asks me what my favorite part of Alice in Wonderland was.

It seems to me that even teenagers are ageless when it comes to the joy and fun that await us at GKTW, WDW and the rest.

Holly in SC

 

[5dwarves]

Patticake:

The staff at GKTW realize that teens have different needs/interests than younger kids, and from what I saw, they accomodated that. There are many things that may only interest younger children (face painting, Barney, etc.), but they do take care of the bigger ones too (arcade, movies, pizza delivery). You can be as involved or uninvolved at GKTW as you want to be. There are also special tickets that you only have access to if you stay at GKTW (like airboat rides in the everglades and a one year passport to participating amusement parks all over the country/world after you check out). If your teen prefers and is able, you can spend most of your time at the parks and only hang out at GKTW for meals and sleeping. GKTW is very convenient to everything. It is a very close drive to WDW and actually a close drive to Universal too. Be aware though that we found that we spent more time in the Universal parking garage and moving sidewalks getting to the gate, than we did on the drive to Universal from GKTW. My wish kid is 8, but I did have my other children with me (one 14 and one now 12). They all enjoyed their stay at GKTW. The villas are nice and spacious for a "hotel" situation and you will probably enjoy having access to a kitchen in the villa there, more than just a bathroom sink and a mini fridge say at the value resorts at WDW. If you haven't already, go to the GKTW website and do a "tour" of the villas. The kids' room has a whirlpool tub in it as well as a very large accessible shower...there are many benefits that come from being away from the huge crowds on Disney property and staying at GKTW, being "pampered" as a wish family. This will be the only opportunity you will have to stay at GKTW because you can only stay there while on a wish trip, you may get the opportunity to stay on property at Disney another time. I was hesitant to go there at first myself, but I was completely won over and very glad that we did!

 

[5dwarves]

Oh, and one more thing...if you stay at GKTW you can go to both Disney and Universal...you will get a ticket package that covers 3 days at Disney, 2 at Universal and one at Sea World.

 

[2kids4us]

Hey ya'll! I haven't been on the boards since March... we went in March with MAW and I was so sad when we got home that I haven't had the heart to get back on until now. Plus... we are going back to Disney in January... just Dh and me!!

I just want to say that your trips will be AWESOME!!!! If you can stay at GKTW... do it!!! We thought we were staying at a Disney resort until the moment we arrived!! They asked us where we wanted to stay... the Polynesian or GKTW... I would have picked Poly but my DD wanted to stay at GKTW and since it was her trip... how could I argue??? I am soooo glad we did!!! It is a moment of time in our lives when we felt like nothing else mattered! After all the chemo treatments and sticks and doctor's, we finally had some peace.

On thing we did that seemed to be a hit with the kids was staying at GKTW for an entire day. We never left the property. My kids loved that! We rode horses, play putt-putt, got in the pool.... and just relaxed! It was so nice!

Make sure you check out the nightly events at the village. We participated in most of them and the kids really enjoyed that. We even got to be part of a pirate and princess party!

I could go on and on about our trip, but I won't. Just be assured that you will have precious precious memories when you get home!

 

[patticake3]

Thanks, everyone! Your responses definitely help. We will check out the link. I know the whirlpool tub would be a hit, and getting a chance to go to Disney and Universal would be great too. He's also considering the land/sea Disney cruise and Atlantis, so we'll check out all of them and see what he decides. We've got a 17 year old daughter too and I wanted to be sure that they both didn't feel too old there, but it sounds like kids of all ages enjoy it. And having extra space is a huge plus!

 

[Momof2wCF]

Thanks to all of you who are so willing to share details about your MaW trip!! It is VERY much appreciated!

 

[Bill_Lin]

What do teens REALLY do at GKTW? We took our DS who is 13 going on 21. He enjoyed escorting his sister and being the "big kid" to help her do her fun kid things. He found the Pirates and Princesses Party at GKTW to be a bit embarrassing, so he went to the Amberville Station. The teens hung out here where they could play video games or just talk to their peers. He really enjoyed the pool. You can usually tempt teens with the Ice Cream Palace at any time. It is so pretty there at night, with the colored lights, that teens like just sitting around in a courtyard. If all else fails, have a free Pizza delivered and watch T.V. in your Villa.

 

[Camster0307]

We are taking our MAW trip at the end of November. We requested a stay at a Disney resort - my daughter has VERY limited abilities and just didn't think she would be able to enjoy all that GKTW offered. Besides, we know that she really, really really enjoys WDW, so rather than getting a 3-day pass to WDW and a 2-day to Universal, we're getting a 5-day WDW pass and we plan on spending our whole trip on Disney property.

We've been to WDW many times before, so I too am an obsessive planner and it's KILLING me to let someone handle the arrangements. I have planned our days though and made all our ADRs. I now find myself getting involved in the shipping of my daughter's supplies - I'm just so worried that some things will be forgotten and would feel better if I do it myself. (my daughter is on a ventilator and missing supplies would be a disaster!).

Anyway, I need some advice from other MAW families: as an obsessive planner, I know what park we'll be at each day of our trip; I have left the night of11/27 open for the MVMCP, but haven't bought the tix yet; thinking I should let my MAW volunteers do it, but what if they can't get the tix? My daughters really enjoy this event so I don't want to risk missing it - I'm thinking I should just pick up the phone and buy the tix myself. I know parties held on the weekend are very popular, but this is a Tues.nite, so do you think there is the same urgency to get your tix ASAP? Or being that we're a MAW family, they would come up with tix for us when we got down there? I know I'm anal -- but I just can't stand that one question mark on my schedule!

 

[Bill_Lin]

Camster, you are funny. I finally found someone who is more obsessive about planning that I am; and you have more ammunition with all of your trip experience. It will be fun to watch how your plans get changed for you. Wish Trips always work that way.

 

[Camster0307]

I know, I know - I'm killing my MAW volunteers! They tell me that I'm leaving nothing for them to do!

I just can't help it - I just love the way Disney treats my daughter and these trips down there are such a big deal for us! I'm divorced now (got the DVC as part of my divorce settlement !) and it's the one "vacation" I take with my girls each year. Last year was a tough one for us. Had our trip planned for the week of Dec.2; my daughter became very ill in Oct. and went into respiratory failure; underwent a tracheotomy the tues.before Thanksgiving; I was still on the phone with my equipment co. trying to figure out a way to get her ventilator to Disney when the ICU dr. had to convince that it really was too soon to take her on a trip. I feel like I'm making up for lost time with this trip! Anyway, I'm curious to see how this all will work out. No matter what - it's all good - we'll be in Disney!