planning MAW vacation!

[Lisarh]

hello everyone!

I am very excited to have found this forum! We are in the beginning stages of planning our trip with the MAW foundation for our daughter Kali. She is almost 3yrs old and such a beautiful little girl.

I am off to do a little bit of research on this forum about our trip!

Thank you!

Lisa:yay:

[WishMom09]

So excited to read about your family. Please tell us more!!!

[shordiebecka]

Tell us more asap! Can't wait to hear about it!

[maroo]

Welcome to the DISboards!!

I am excited to hear about your trip!

I will put a link to this pre-trippie on the Wish Trippers Unite thread. Feel free to post and tell us all about your family. I am excited for you guys! :)

[Lisarh]

Hello!

I am glad to have finally figured this forum out! What a wonderful place, so full of information ;)

I am Lisa (34) my husband Calvin (33). We have 2 children together and I have 2 children from a previous marriage. Jordan (12) Deven (10)- the 2 greatest kids ever! They are my kiddos from marriage #1
Kali ( Wish child! 3 in June) and Emma Claire (11 months). My husband and I have been married a short 4 years and it has been a very rough 4 years.
I had my tubes tied after my 2nd son was born, never thinking I would want more children. Fast forward a few years and I meet Calvin, he had no children of his own and desperately wanted his own children, so I opted to have my tubal reversed. We married in May 2005 and I had my surgery September 2005 and I was pregnant with Kali by October 2005!:)
Kali was born June 22 2006. a healthy 9lbs 10oz (2 weeks early!!)

When Kali was 4 1/2 months old she had her 1st seizure. It was November 6th 2006. She stopped smiling immediately, lost all head control and continued to have sz's constantly. After I begged the Dr's to do an EEG (2 weeks of begging) they finally gave us the heart breaking news. Kali had infantile spasms. It is the most catastrophic form of epilepsy.
Kali has been on over 21 sz meds, the keto diet & we have seen over 11 neuro dr's and 2 neuro surgeons. Developmentally she is 5 months old. She can sit on her own, but no communication. She cant walk/talk. She has a g-tube and can't eat table foods.
Kali has had 3 status sz's-one lasting 13hrs. She is a fighter though.. she amazes me everyday.
They question if genetics play a role?:confused3
Right now, her current diagnosis is intractable epilepsy and dravet.


Kali's website is kalielizabeth . com ;)
I must give meds now! be back soon!!

[Corrine 1973]

I am so sorry that your daughter has been through so much. She deninatly sounds like a strong little girl. I can't wait to see some pictures.

So tell us a little about your trip. When are you going? Are you staying at GKTW? I can't wait to hear more. I am sure that everyone will have a great time.

My family is going sometime in September (we hope) feel free to click on Liam's Pretrip report in my signature. Feel free to post as many times as you like to get your post number's to 10.:rotfl:

[Lisarh]

to be honest, I am not sure when we are going?? I am still waiting to hear from our MAW volunteers. There was a mix up with the paperwork, but I think it has been settled and everything should be close to being finalized? Or at least I hope.:confused3

We are aiming for the week of June 14th, my husband already had time off work, plus Kali cant be in real hot weather (it can cause seizures)

Does anyone know if the GKTW is already filled? We were told that we should be fine, but I dont know?

thanks!

Lisa

[LindaBabe]

Hard to say whether it's filled or not. Let's wait and see what your wish organization comes up with. It will already be pretty hot in June, but there's lots of air conditioning.

[Corrine 1973]

You will probably find out about GKTW when you get your confirmation with MaW. I am in the same boat you are in, waiting for them to tell me when we could go. We are hoping for some time in September.

Keep us updated.:)

[Lisarh]

we got our dates today!

June 17 - 23!! Yippie! So now Im excited!!!!!!!!!!!!

[queengonzo]

HOLA!!! i am so happy for ya'll!!! and in june!! wooo hooo!!

we are leaving on SATURDAY for our MAW trip!! you little girl sounds like such a FIGHTER!!! my son also was diagnosed with infantile spasms but after 4 epi of them they never developed....

i can't wait to hear more about your family and your trip!! take car and GOD BLESS!

[Lisarh]

how is your son now? I will have to read your pre-trip report! Have fun and enjoy every second of it!

Lisa

[tinytreasures]

she sounds like a little fighter
I can't wait to hear all about your trip

[Corrine 1973]

Now I am extreamly jealous.:rotfl:

Congrats on the dates, now you can really start planning.:banana:

[Lisarh]

I stayed on top of them though! I blame the OCD/ADD in me though!:lmao:

so.. apparently we do not have to bring any money?? That is what the volunteer told me!

What do I need to do now? What do I plan? HELP !!! :rotfl:

Lisa

[Lisarh]

oh wait! post #10! yay!

[Lisarh]

Ok, I am going to attempt to add the link to Kali's webpage

www.kalielizabeth.com. I hope this works!;)

[tbelfonti]

Lisa - maw will give you a check for all your expenses. We get ours on Friday along with our entire packet.

[Lisarh]

Good to know! Thanks!


Lisa

They said something about planning our "party" I suggested Chuck E Cheese. Where have you guys had your party at?

[Corrine 1973]

I've been calling our wish volenteer almost weekly to see what was going on. She is probably dreading my name showing up on her cell phone.:lmao:

From my understanding MaW trys to take care of everything including spending money. You won't know how much you are going to get till right before the trip so I am going to budget in some of my own money for unexpected things. There is also a Walmart just down the street from GKTW so you can buy things you forgot or things you just didn't want to deal with when packing. (I am going to buy diapers there. Who wants to pack those.:confused3)

I would definatly start planning on what parks to see and on what days. If you need help send Maroo on the wish trip united thread a message, she seems to be good at that. She can also cheak out what the crowds might be like on certain days to help here. I have also started looking on youtube and buying books to get a better idea on rides. I wouldn't micromanage your day, but definatly get an idea of what you want to do, what you would like to do if you have time, and what you could miss. You might also want to get an idea of where to eat so you are not looking around when everyone get hungry and seatteling.:scared1:

From my understanding MaW and GKTW buttons get you in through the back of lines and the fast pass lane but the CM needs to see them so if they don't see you make a point to see them. Plus I have also learned that if not everyone can go on the ride because of hieght they will let somestay with the child while the rest of the party goes on the ride. As soon as they return from their ride the person is able to ride without having to wait in any line.:yay:

OK, I hoped this helped a little bit. Can't to hear more and can't wait to see some pics now that you are past 10 posts.:woohoo::woohoo:

They said something about planning our "party" I suggested Chuck E Cheese. Where have you guys had your party at?


We are not to that stage yet so I can't tell you where we had the party. Chucky E. Cheeses sounds great though. Liam had his 3 birthday there and loved it. I just might have to steal that from you.:rolleyes1

[maroo]

I would be glad to help you with a planner!!! :)

Just let me know and I can send you the info I would need to do it. :) It is totally free and is an excel spreadsheet with the GKTW info on there and parades and such! :)

[Lisarh]

I have been out of town, sorry for the delay!! I would LOVE to have a helper for the trip! Do you need my email address?

YAY!!! Thank you so much!

:)
Lisa

[keetmommy]

we got our dates today!

June 17 - 23!! Yippie! So now Im excited!!!!!!!!!!!!

Are you staying at GTKW? We will be there June 15-21

[Lisarh]

yep! we will be staying at GKTW!!

[Lisarh]

here are some pictures!

Kali- in her EEG cap (at home)

http://i16.photobucket.com/albums/b10/LisaRen/DSC00908.jpg

Kali again (MAW child)
http://i16.photobucket.com/albums/b10/LisaRen/IMG_5137_edited-1.jpg

My husband & other kiddos. ?Emma jordan & Deven
http://i16.photobucket.com/albums/b10/LisaRen/IMG_5468.jpg

Kali in her wheelchair
http://i16.photobucket.com/albums/b10/LisaRen/Kali%20Mae/DSC00107_edited-3.jpg

[Corrine 1973]

Your kids are so cute!!!!

Thanks for sharing the pictures!:cheer2:

[tinytreasures]

your family is so cute

FYI- Corrine I packed diapers so I had more room to bring home stuff.
I packed a whole bag with snacks and diapers and we needed it to get everything home

[Lisarh]

OK, so is it normal to NOT hear anything for a while from your MAW volunteers?

and.. what are GAC?

Thanks!

Lisa

[Lisarh]

Ok, I have another question!

We will be staying at GKTW June 17-23. Exactly what tickets do we get? My family and my husbands family are meeting us there, and we need to tell them which parks we will be staying at!

ALSO! Kali's birthday is June 22, can we ask for something special to be done while were there for her birthday??

[twinmum]

OK, so is it normal to NOT hear anything for a while from your MAW volunteers?

and.. what are GAC?

Thanks!

Lisa

Ok, I have another question!

We will be staying at GKTW June 17-23. Exactly what tickets do we get? My family and my husbands family are meeting us there, and we need to tell them which parks we will be staying at!

ALSO! Kali's birthday is June 22, can we ask for something special to be done while were there for her birthday??

Whoohoo! All my posts, and yet I've never multi-quoted, and I think I've got it!

I noticed you hadn't had a reply to your questions, so I'll do my best (our Wish Trip was in November 2008).

First, MAW wish granters. Yes, I think you'll find it's a bit of "hurry up and wait". Sometimes it seems like ages since you've been in touch - but perhaps it's not as long as you think - it's just that you are so eager for answers etc that every day seems like a week! I found we'd wait a while, then lots of things happened all at once. It was also useful that we communicated a lot be email, so I felt I wasn't sidturbing her if I followed up.

GAC= Guest Assistance Card, the paper cousin to the Wish "magic button." YOu'll get a GAC for WDW, and its equivalent for Universal/IOA. We've been to WDW before and were already familiar with the GAC, because our son uses a wheelchair in the parks, has stamina issues etc. Usually you need to go to Guest Services and explain your needs to a CM and you are then given the appropriate GAC (such as needing to wait in the shade etc) For Wish families, you get a GAC that essentially instructs the CMs at the attractions to "expedite" you. Sometimes that means going straight to the front of the line, but when we went we found it meant entry through the FastPass line. Either way, it means significantly less waiting time. There are many types of GACs, but the Wish one is VERY useful and will make a huge difference to your trip. Because we get one usually, the difference was not as significant (Mark's medical issues result in a GAC to be able to use alternate entrances, which usually means the FastPass line).

Tickets: you will get passes for 3 days at WDW (park hoppers), 2 days at Universal/IOA and 1 day at SeaWorld. At Orientation, you'll learn about the availability of tickets to other local attractions...if you still have time!

I think there oare other families who have celebrated birthdays at GKTW...and I know they so a great job of singing Happy Birthday! A character meal with favourite characters might be a good idea. At WDW, stop by Guest Services and get a Birthday button and you can expect tons and tons of birthday greetings from CMs and other guests. There are loads of ideas...can you remind is how old your birthday girl will be?

Hope this helps!
Alison

[Lisarh]

oh yay! Thank You for answering my many questions!

Actually (funny thing!) this morning I got a phone call from our MAW volunteer and we are meeting Monday to get our packet! I must have talked her up!

Kali has seizures (over 300 daily) and she cant be in the heat for to long. I guess we will talk to them about all this then?

She will be 3yrs old June 22.

Thanks again!

[maroo]

Sorry...just now seeing your questions! :goodvibes

I think twinmum basically answered everything! But I wanted you to know that we are still reading!! :thumbsup2

[Lisarh]

We received our packet yesterday from our MAW volunteer!

very exciting!

I did not realize how many theme park passes they give you:upsidedow
We will be busy!

What is the dinner theater? they added $$ for this?

What kind of rental car did you get? We are a family of 6, with 2 car seats.

thanks!

[maroo]

I would ask MAW about the rental car...I think it is usually very adequate, though. I drove Lauren's special van, so we didn't end up renting a car.

There are several Dinner Theatres you can choose from and you can usually get the MAW child in free and the rest of the party is half price. You have to reserve a spot for one after you check in to GKTW and they have to give them 48 hours notice, so it would have to be scheduled on the 3rd night or later in your trip.

We did the Pirate Dinner Adventure because William loves pirates. We, personally, had a bad experience there - but the show and dinner were good - the staff was just uneducated about disabilities. PM me if you want more details on that. But there are several dinner theatres.

If it is something your kids really, really want to do - then I would go for it...but really, there is PLENTY at Disney, Sea World, Universal and GKTW that would possibly be more fun.

It is good, though, that you already have an idea on your budget - that will help you guys a lot! :)

[Lisarh]

I was quite surprised at the $$ they give you! I was not expecting that much! ;)

the only thing I was disappointed about was the flight, we have to make a connection. I was really hoping for a straight flight to Orlando. Oh well!

We have Kali's wheelchair, so hopefully she will do Ok with the changes and environments. I am going to board the plane LAST!

thanks again!

[Lisarh]

ok.. question!!

what is 1900 park fare?

I keep reading about this!!

Thanks

[maroo]

ok.. question!!

what is 1900 park fare?

I keep reading about this!!

Thanks

It is a character meal at the Grand Floridian (resort on the monorail). I have seen several reports lately of Wish Kids getting private meet and greets...but I don't think that always happens.

This is a link to a website that has the menus and possible characters that come to the meals.

http://allears.net/din/cb.htm

[Lisarh]

WOW.. we have 3 weeks and a few days before we go!! I am so upset, I have not received any messages that I had received PM's here :confused3

I am getting sooooooooooo nervous for the trip!! EEEKKK!!

[bellairisa]

Hi, I just found your PTR and it looks like both of our MAW trips are just around the corner!! :yay: How's the planning, packing, and your nerves going?

[maroo]

wow!!!

Time is flying by!

I was out for a week in Chicago and have just gotten my head above water in catching up while I was gone.

I can't believe you guys are leaving in 9 days! :eek: That is awesome!

You guys are going to have so much fun!!!!

[Andreaswish]

Hi,
I just found your PTR and am enjoying it. Hope you have a great trip. We just got back on June 14.

Diane