Wish Trippers...Unite!! Volume One

[Queenie122]

patticake3 - Can't believe your trip is here! Have a wonderfully, magical time!

As for the wish lounges, I never used them, but if I remember correctly, the one in MK is by the first aid and baby stations - right next to the Crystal Palace.

Take lots of pix!

Yes, I've heard that is where it is too. I think I remember someone saying the other parks have VIP lounges you can use - I would ask a CM and see what they say!

Have a great time on your trip, I'm sure it will be wonderful! Try to enjoy every second and not let it fly by too fast


I spoke to our coordinator today - looks like we're going in May! She wants me to call back tomorrow with confirmation of the exact dates we want and the info on my Mom and brother - pretty sure Mom is being paid for (because my DD is an only child) and my brother will be paying for his own airline ticket and attraction tickets but hey, plane and park tickets isn't bad for a week vacation! He gets to stay in the Village with us for no cost. She said there was no availability in GKTW Village at all in April, it's very busy. Also, no problem for extending our vacation, we just have to return the car and check out of the Village. we have family in Orlando who will host us the extra days!! I feel so lucky right now.

So, it finally seems like things are coming together!

 

[bex271]

patticake, have fun and safe in your travels and take lots of pics

queenie, glad to hear you've found out when you're going and that you get to extend your stay and that your mom and brother get to stay with you in the village.

becca

 

[Holly Sox]

Yes, I've heard that is where it is too. I think I remember someone saying the other parks have VIP lounges you can use - I would ask a CM and see what they say!

Have a great time on your trip, I'm sure it will be wonderful! Try to enjoy every second and not let it fly by too fast


I spoke to our coordinator today - looks like we're going in May! She wants me to call back tomorrow with confirmation of the exact dates we want and the info on my Mom and brother - pretty sure Mom is being paid for (because my DD is an only child) and my brother will be paying for his own airline ticket and attraction tickets but hey, plane and park tickets isn't bad for a week vacation! He gets to stay in the Village with us for no cost. She said there was no availability in GKTW Village at all in April, it's very busy. Also, no problem for extending our vacation, we just have to return the car and check out of the Village. we have family in Orlando who will host us the extra days!! I feel so lucky right now.

So, it finally seems like things are coming together!

Oh, I know, I know!

There are 2 VIP lounges at Epcot: there is one at Test Track and one at Mission Space. We did not go in the one at Test Track because the directions (in the bunny book) were a little confusing and I was shy (at that point)) about asking the CM. But at Mission Space, we did ask and it was awesome. If you can't find either of them, ask the CM at the queue entrance, and they should help you.

Holly

 

[OneBlessedFamily]

Hi everyone! We are a future wish family. My son, age 3, has hypoplastic left heart and tricuspid atresia. Our doctor in St Louis just referred us to MAW and finished the referral. I guess a wish-granter will be contacting us in a few weeks.

Erm, what else? My son just joined our family. He is from China and my husband returned 2/3 with him. He will have open heart surgery this spring and we hope to do our wish trip next year around this time. Sam cannot be in cold weather at all - must be inside if the temps are under 55. So, we need to be careful about when we go if we want to do anything at all at night (mini-golfing, etc).

I can't wait! I love reading all the info about everyone's trips. Our local MAW said they do not provide transportation to the airport, so we will need to go and pay for parking as well. She also said that very rarely are they able to give people anything extra for food or spending money. So, it's probably good that we have a year to save for this trip!!!

Mary
www dot oneblessedfamily dot com slash blog

DH - Doug
DD - Lydia (7 - a. 11/06 Nanjing, China)
DD - Gwen (5 - bio daughter)
DS - Sam (3 - a. 1/08 Changzhou, China)
DD - Phoebe (11 weeks - bio)

 

[hotmamac]

Hi everyone...
I was here a while ago, but my daughter's trip was placed on hold due to horrible uncontrolable seizures, so I kind of dropped out for a while.
Well, Ali's seizures are under control and her mood and temperment have done a 180. She's happy and smiling and pleasant (almost) all the time. For a three year old anyway
So I called our MAW chapter two days ago and let them know we would like to go forward with her wish. The thing is, I was almost embarrassed to tell them that she wants to go to Disney World. I sort of feel like we're asking for a handout. I know it's weird and it's probably just me, but I was stammering and tripping over my words when she asked me if I had any idea what Ali's wish would be.
Of course now I'm totally geeked! I've already been back to the bookstore and on Amazon looking for Disney guides! And of course, I'm back here now too!! I'll be around a lot more now.
Love and Disney wishes to everyone!
Misty

DH: Vaughn
DS: Wil 6
DD: Ali 3

 

[wendygrace]

Hi all. Just a quick post. Michael has been discharged and feeling great. Some we're off and running all day. Still here in St.Louis through the end of March though for appts and therapies and such. Welcome to the new families. Good luck on your trips. If you start a trip report and want it linked on the first page please send me your info. Misty, glad your dd is doing better and they found something that will work for her. 50% of MAW wishes are to a Disney park so no need to be embarrassed. You're doing the same as everyone else. LOL
Mary, glad to hear that your MAW let you know what to expect money-wise. I hope you feel free to ask any questions you have.
Queenie, so glad to hear things are coming together!

Gotta run.

 

[bex271]

wendy, i'm glad to hear that michael has been discharged and is doing good.

becca

 

[LindaBabe]

That was the best news, Wendy, when I read on the caring page that not only was he discharged, but you'd been out having FUN together!

Welcome all new families - I've been away for a few days - well here, but busy . . .

R E T I R I N G!

 

[hotmamac]

I was re-reading my last post and I hope it didn't sound like I am embarassed by my daughter or to be a part of MAW. I just felt a little weird telling someone else that my daughter wanted to go somewhere and to expect them to take care of it. I think that the past three and a half years of dealing with doctors who don't always listen, people who don't know what the heck Tuberous Sclerosis is and all the ups and downs of this whole thing have taught me to be uber-self reliant, so it feels slightly unnatural that here is the whole group of people ready willing and able to give my daughter (and the whole family) this amazing gift. I almost feel guilty accepting this trip and I KNOW there is no reason why I should. I'll have to get over that! I really hope I didn't offend anyone with my poor word choice.
I am incredibly grateful and amazed at the whole experience and we've only just begun.
Anyway, I just ordered the Complete Guide to Disney World and I already have the Birnbaum's and the Unofficial. Does anyone have any favorite guide books other than those?
I'll be back soon.
Take care all!
Misty

 

[wendygrace]

Gee, my last message was disjointed.

Misty, I totally understood what you were saying but just wanted to let you know that 50% of MAW's trips are requests to WDW. I hope I didn't offend.

My favourite is the "Open Mouse" which is a guide book geared towards families that have "special issues". It has great info in it such as where the bathrooms are and things like that. Highly recommend it!

Gotta run!

 

[alizesmom]

I was re-reading my last post and I hope it didn't sound like I am embarassed by my daughter or to be a part of MAW. I just felt a little weird telling someone else that my daughter wanted to go somewhere and to expect them to take care of it. I think that the past three and a half years of dealing with doctors who don't always listen, people who don't know what the heck Tuberous Sclerosis is and all the ups and downs of this whole thing have taught me to be uber-self reliant, so it feels slightly unnatural that here is the whole group of people ready willing and able to give my daughter (and the whole family) this amazing gift. I almost feel guilty accepting this trip and I KNOW there is no reason why I should. I'll have to get over that! I really hope I didn't offend anyone with my poor word choice.
I am incredibly grateful and amazed at the whole experience and we've only just begun.
Anyway, I just ordered the Complete Guide to Disney World and I already have the Birnbaum's and the Unofficial. Does anyone have any favorite guide books other than those?
I'll be back soon.
Take care all!
Misty

I think we've all been there with the guilt feelings. Your little girl deserves it. As a matter of fact the whole family deserves it. Not in an "I'm entitled" way but more as recognition of what you have been through. Relax and enjoy the trip. Kaaren

 

[Queenie122]

Hi all. Just a quick post. Michael has been discharged and feeling great. Some we're off and running all day. Still here in St.Louis through the end of March though for appts and therapies and such. Welcome to the new families. Good luck on your trips. If you start a trip report and want it linked on the first page please send me your info. Misty, glad your dd is doing better and they found something that will work for her. 50% of MAW wishes are to a Disney park so no need to be embarrassed. You're doing the same as everyone else. LOL
Mary, glad to hear that your MAW let you know what to expect money-wise. I hope you feel free to ask any questions you have.
Queenie, so glad to hear things are coming together!

Gotta run.

That's great news about Michael and very glad he is feeling better! Forgive me for asking, I am unfamiliar with all his back story - will he need more procedures?

Welcome all new families - I've been away for a few days - well here, but busy . . .

R E T I R I N G!

Congrats!

I think we've all been there with the guilt feelings. Your little girl deserves it. As a matter of fact the whole family deserves it. Not in an "I'm entitled" way but more as recognition of what you have been through. Relax and enjoy the trip. Kaaren

I am totally feeling the guilt thing. My daughter has gone through SO much and she still has things to go through but her outlook is great and she's doing pretty well now. I keep telling myself what alizesmom's says above but sometimes it's tough. Of course only a couple of years ago we weren't sure she would ever make it so I guess it evens out now.

 

[wendygrace]

Queenie, I completely understand what you are going through. I was like that a year ago but this last year has opened up so many doors now that I've dropped the guilt. It is so hard though! We spend years doing for ourselves and having to do everything for our kids and now someone wants to do something for us! Wow! Soak it up! You deserve it!

Michael may or may not need more procedures. It is unchartered territory and although we are all thrilled with what was accomplished, there may be more room for improvement. The big question will eventually be if we want to push the envelope.

Hey Linda, I somehow missed the Retiring bit! Congrats! So when you gonna come visit us?

 

[hotmamac]

Well, I just received the phone call from our Wish volunteers! We set up a meeting for next Tuesday.
I'm so nervous and excited!!! The one thing that concerns me is that Ali isn't all that responsive to conversation. Her biggest developmental delay has been in her speech. She's made huge progress and of course, I understand what she's saying, but not everyone does. I've asked what she wants and she says "this" and points to something Disney...sometimes it's my t-shirt, sometimes it's her Disney pricess dress up trunk and one time it was a Mickey stamp that she got on her hand from The Little Gym. I hope that it's enough. I don't want them to think that this is all coming from me. I know what she wants, but she just sometimes has trouble expressing it.
Anyway, the ball is rolling!!!
Be back soon,
Misty

 

[wendygrace]

Misty, I wouldn't worry too much about it. They asked us as well before coming out and we let them know that Michael's wish was to go to Disney World. They came prepared for that. Michael's "wish" was to "fly with Peter". They figured it out. LOL How exciting for you!

 

[Queenie122]

Queenie, I completely understand what you are going through. I was like that a year ago but this last year has opened up so many doors now that I've dropped the guilt. It is so hard though! We spend years doing for ourselves and having to do everything for our kids and now someone wants to do something for us! Wow! Soak it up! You deserve it!

Michael may or may not need more procedures. It is unchartered territory and although we are all thrilled with what was accomplished, there may be more room for improvement. The big question will eventually be if we want to push the envelope.

Thanks Wendy! It would feel great to let go of some of the guilt. The past few days have been full of not great medical news for her, the possibility of needing even more surgeries and more doctor's visits. I don't have time to feel guilty right now! lol

I hope things continue to settle down for Michael and of course that he has the smoothest road possible

Well, I just received the phone call from our Wish volunteers! We set up a meeting for next Tuesday.
I'm so nervous and excited!!! The one thing that concerns me is that Ali isn't all that responsive to conversation. Her biggest developmental delay has been in her speech. She's made huge progress and of course, I understand what she's saying, but not everyone does. I've asked what she wants and she says "this" and points to something Disney...sometimes it's my t-shirt, sometimes it's her Disney pricess dress up trunk and one time it was a Mickey stamp that she got on her hand from The Little Gym. I hope that it's enough. I don't want them to think that this is all coming from me. I know what she wants, but she just sometimes has trouble expressing it.
Anyway, the ball is rolling!!!
Be back soon,
Misty

Yay and Congrats! It's such an exciting time! I was also very worried about this. Our daughter was very firm on her wish to Disney until 2 days before our meeting, then she kept saying she wanted books! Now, I'm not kidding when I say she probably has 600 books already and she's only 3 1/2! She loves books, true, but I know she'd love the trip even more than more books

Anyway, they asked us ahead of time and we told them a Disney trip. When they came they asked her, "Is there someplace special you'd like to go?" and of course she answered "DISNEY!! TO SEE THE PRINCESSES!!!" It was really funny. I think they deal with lots of kids who have lots of different issues and they'll understand. After all, Mom and dad know best

I wanted to get some input on our schedule. Can I post that somewhere to get tips on it? I was also thinking of doing a trip report - only because we got SO much valuable information from reading other Wisher's reports that I just have to pay that back! SO maybe a pre report that turns into a report? What do you ladies think?

 

[OneBlessedFamily]

Wendy,

Do you live in Missouri? We are stationed at Ft Leonard Wood, but DH just got word last week that he's being moved to St Louis in 2 weeks. So, we'll be there too, with multiple visits to St Louis Children's and Cardinal Glennon. Maybe we'll bump into you there. : )

Mary

 

[wendygrace]

Mary, we do not live in St.Louis but we will be coming here from Chicago to get treatment. I LOVE St.Louis Children's. I have just transferred all his specialsts here because they have been AWESOMe here. Let me know when you get down here and settled. I would love to meet you! There are so many great, FREE things to do here. The Zoo is very nice (and free), the Science Center is great (and free) and I really liked their Children's Museum (not free). The also have very nice Art and History Museums that are FREE! I don't know much about Cardinal Glennon except from the other families at the Ronald McDonald House but if I were you, I'd pick one hospital if at all possible. (and I'd pick Children's). Although I have heard that Cardinal Glennon's neurology may be a bit better.

Queenie, sorry to hear you've had some bad news for your darling. I hope the best for you. *hugs*

 

[Iluvmickeymouse!]

Hi everyone! We are a future wish family. My son, age 3, has hypoplastic left heart and tricuspid atresia. Our doctor in St Louis just referred us to MAW and finished the referral. I guess a wish-granter will be contacting us in a few weeks.

Erm, what else? My son just joined our family. He is from China and my husband returned 2/3 with him. He will have open heart surgery this spring and we hope to do our wish trip next year around this time. Sam cannot be in cold weather at all - must be inside if the temps are under 55. So, we need to be careful about when we go if we want to do anything at all at night (mini-golfing, etc).

I can't wait! I love reading all the info about everyone's trips. Our local MAW said they do not provide transportation to the airport, so we will need to go and pay for parking as well. She also said that very rarely are they able to give people anything extra for food or spending money. So, it's probably good that we have a year to save for this trip!!!

Mary
www dot oneblessedfamily dot com slash blog

DH - Doug
DD - Lydia (7 - a. 11/06 Nanjing, China)
DD - Gwen (5 - bio daughter)
DS - Sam (3 - a. 1/08 Changzhou, China)
DD - Phoebe (11 weeks - bio)

Welcome and I'm gald you found us!! Hopefully we can answer any questions that you have!

Hi everyone...
I was here a while ago, but my daughter's trip was placed on hold due to horrible uncontrolable seizures, so I kind of dropped out for a while.
Well, Ali's seizures are under control and her mood and temperment have done a 180. She's happy and smiling and pleasant (almost) all the time. For a three year old anyway
So I called our MAW chapter two days ago and let them know we would like to go forward with her wish. The thing is, I was almost embarrassed to tell them that she wants to go to Disney World. I sort of feel like we're asking for a handout. I know it's weird and it's probably just me, but I was stammering and tripping over my words when she asked me if I had any idea what Ali's wish would be.
Of course now I'm totally geeked! I've already been back to the bookstore and on Amazon looking for Disney guides! And of course, I'm back here now too!! I'll be around a lot more now.
Love and Disney wishes to everyone!
Misty

DH: Vaughn
DS: Wil 6
DD: Ali 3

Welcome back Hot mama!! Glad to see that you are getting to move forward with the wish process. Remember, you and your family deserve this trip. We all have experienced the guilt thing. Trust me.

WendyGrace.....glad to hear that Michael has been released. Hope all is going well.

Does anyone know if there are scrapbooking supplies (pre-made stuff...papaers etc.) out there for Make-A-Wish? I'm finally getting the bug to get going on the Wish trip scrapbook and was wondering if there was anything or not.

Thanks and I hope everyone is doing well!!!!!!!!!

 

[OneBlessedFamily]

Mary, we do not live in St.Louis but we will be coming here from Chicago to get treatment. I LOVE St.Louis Children's. I have just transferred all his specialsts here because they have been AWESOMe here. Let me know when you get down here and settled. I would love to meet you! There are so many great, FREE things to do here. The Zoo is very nice (and free), the Science Center is great (and free) and I really liked their Children's Museum (not free). The also have very nice Art and History Museums that are FREE! I don't know much about Cardinal Glennon except from the other families at the Ronald McDonald House but if I were you, I'd pick one hospital if at all possible. (and I'd pick Children's). Although I have heard that Cardinal Glennon's neurology may be a bit better.

Well, we go to Children's for our daughter's cleft palate treatment and to Cardinal Glennon because their cardiology team is 2nd best in the country at doing the Glenn and Fontan procedures. But both kids see only doctors at their hospital. If that makes sense.

We are huge fans of St Louis. We have a year long family pass to the Magic House and we spend ridiculous amounts of time at the Science Museum and the Zoo. I haven't been to the history museum yet, but I will as soon as I don't have 4 kiddos tagging along. I would get so caught up in the exhibits I would lose my children. J/K!

I would love to meet up. DH will actually be stationed in Alton, IL, but we'll probably live in MO just to not have to conform to IL homeschooling laws and just stick with MO.

Mary