Gloria Joy's premature (??) WDW MAW PTR

[Mom2mitokids]

THANK YOU MAROO!! I was feeling so lost. I am hoping to have my best friend come with but was told that when we have our first big meeting I'll have to ask. However they also said that they may not cover my oldest since he will be 18 by the time we go?? Something else to ask! He is already a big help with his siblings but I would like for him to be able to go and just have fun!
I wasn't aware that MAW may help with arranging equipment down there. I may be doing my PTR prematurely because we haven't had the meeting yet. I just tend to be a worrier and love having a plan in place! MAW was the one that told me about GKTW so I am assuming that is where we would stay!?

My daughter is 18 and will be 19 when we leave and she is going. I know different chapter are different, but I sure hope they let him go. He is still a sibling. We were told..if they live at home..they can come.

 

[Mom2mitokids]

Hi Jeanie and to the Disboard. My friend from Canada is here, so I haven't been able to get on the last few days. She leave on Wed., so I will be a regular again.
I'm so glad Gloria got her wish. I know a few kids with VACTERL. I can't wait to get to know you and your kiddos more.

 

[Woth2982]

Hello, So happy your daughter is getting her wish. My cousin was a wish kid about 12 years ago I think. I know that several people that have done MAW trips have been able to get a rental car, not sure if it is an option, but you may want to think about having your daughters doctor call in a prescription for the medications that need to be kept cold to a local pharmacy near GKTW. I know these drugs are often monitored by insurance companies and are dispensed on a schedule, so getting a partial perscription for the week may not be possible, but it is worth a shot.

But I would definitely talk to MAW about the transportation of the medications, and when the flights are booked call the airline and see what their policy on carrying on medications is. I am sure it is a common concern, and I think as long as the label is visible the airlines will allow you to carry it on no problem.

 

[Glo's wish]

Thanks everyone for stopping in and your words of encouragement and advice! Not much to update, still waiting to get this show on the road! I'm trying not to drive my friends crazy by talking about the trip all of the time but it is very hard! It has been so nice to get my Disney "fix" here.
Hopefully this week we will get more details, a phone call, something???? School starts for my kids tomorrow so that will be a nice distraction. Have a wonderful night!!

 

[hgpiglet]

I'm so glad that your DD is getting her wish! I wouldn't feel to bad about starting a PTR before you even have a meeting, I'm hanging out here all the time and we haven't even gotten the news that my DD will be getting a wish yet . I look forward to reading your plans and seeing what answers you get too, as some of those same issues we will be faced with if my DD gets a wish and we get to go to WDW.

 

[Glo's wish]

I'm so glad that your DD is getting her wish! I wouldn't feel to bad about starting a PTR before you even have a meeting, I'm hanging out here all the time and we haven't even gotten the news that my DD will be getting a wish yet . I look forward to reading your plans and seeing what answers you get too, as some of those same issues we will be faced with if my DD gets a wish and we get to go to WDW.

Thanks Heather. I try hard to be a patient person, usually I fail miserably though!

 

[Glo's wish]

Still waiting for more info on Glo's MAW trip. We are almost at the end of the "up to 6 weeks" mark for the appt (and more info!).
While we are waiting Glo is keeping me pretty busy. Found out Wed. that she has Cdiff again. This is the 2nd time in as many months!
I also just received the results of her urine culture and she has yet another UTI caused by yet another strain of bacteria. This is the 5th UTI in 6 1/2 months!!! I usually like rollercoasters but this one is making me sick!
Thank goodness for the upcoming wish trip to help occupy some of my thoughts. It gives me something to research other than medical treatments!
Two questions- did it take anyone else 6 weeks from the time you received notification that your child qualified until you got down to business?
Also, if we go down for Glo's 7th birthday (march 1) where would you recommend going for her birthday dinner??
THANKS for listening while I vent!!

 

[Mom2mitokids]

Sil (DS17)

Max (DS11)

Sam (DS9)

Gloria (DD6)

You have some cuties.

 

[Glo's wish]

You have some cuties.

Thanks Kris. They definately all have my heart!

 

[Glo's wish]

Gloria finally seems to be feeling better, although still more tired. She finished 2 of her antibiotics which brings her down to 3 (2 oral and one inhaled). Hopefully this will help with some of her stomach upset.
In happier news Glo lost her first tooth! She has been waiting SOOOO long for this! It seems that every kid in her class last year lost one and she was in tears that her's wouldn't come out! It was heartbreaking for her. She so wants to be like the other kids in her class as it is becoming more apparent just how "different" she is. Thankfully no one teases her for not eating orally or because she is in diapers yet. I dread the day that starts happening,
Here are a couple of picks of the kids- at least the 3 younger ones as my 17 yr old already drove off- on the 2nd day of school. Ya, bad mommy forgot to get one on the first day.
Also one of Gloria missing a tooth. Please excuse messy hair and face as I wanted to take pic right away so that I wouldn't forget!
Enjoy the rest of your weekend

 

[Glo's wish]

 

[Mom2mitokids]

WTG Gloria!!!! Kylee was 6 1/2 when she lost her first tooth and then they all seemd to come out all at once. Just turned 7 and now has 6 gone.

 

[Glo's wish]

WTG Gloria!!!! Kylee was 6 1/2 when she lost her first tooth and then they all seemd to come out all at once. Just turned 7 and now has 6 gone.

I think she's hoping for that! They aren't any use to her except to put under her pillow for cash!!!

 

[Glo's wish]

I have a quick question for you all. I've been looking at ADR's and am wondering if they all need to be prepaid, or just the big ones like Spirit of Aloha? Ok, I guess I have 2 questions. Is there a way to get discounts on ADR's? I notice other PTRs people schedule numerous ADRs and I looking at the cost per person (up to $36 per person??) and am wondering if they know something I dont? Maybe I'm just cheaper (aka broke)???

 

[wishin' on a star]

How cute is she?!!! Catherine just lost her first tooth yesterday, and she's 7. And even that one wouldn't have fallen out yet if she hadn't fallen in the bathtub a couple of months ago and knocked it loose!

Regarding ADR's....most of the character meals and special meals do require pre-payment. Most ADR's at TS restaurants don't, though. We were pleasantly surprised at how much money MAW gave us for spending money. Except for one character breakfast, we always at breakfast at GKTW. Remember that any meal you eat there is free...leaving your MAW spending money for the fun stuff you want to do in the parks. I know every chapter is different for how much they give...but remember you will get an expense check. Most people don't get them until a week or so before the trip, which definitely makes planning hard.

 

[Glo's wish]

Thanks Laura! I was worried that all ADRs required prepayment. I guess it was just that character meal and Aloha that I checked out were "special" dinners. I do plan to eat all breakfasts, and maybe some lunches at GKTW to help cut costs but would like to do some special dnners. Thanks again, I feel much better now!

 

[Mom2mitokids]

Thanks Laura! I was worried that all ADRs required prepayment. I guess it was just that character meal and Aloha that I checked out were "special" dinners. I do plan to eat all breakfasts, and maybe some lunches at GKTW to help cut costs but would like to do some special dnners. Thanks again, I feel much better now!

I would love to do a special dinner, but since we have 7 of us....It's not going to happen. We would rather stay extra days in Florida instead. I just can't see spending almost $300 on a dinner, when that can get us 3 nights extra stay for a hotel.

 

[Glo's wish]

I would love to do a special dinner, but since we have 7 of us....It's not going to happen. We would rather stay extra days in Florida instead. I just can't see spending almost $300 on a dinner, when that can get us 3 nights extra stay for a hotel.

Kris, I totally get this! We will not be extending our stay, but still cannot imagine spending this much on one dinner!

 

[Glo's wish]

Honestly, I tried and I tried to be patient. It just got too hard! I finally emailed the MAW chapter to make sure I hadn't dropped the ball somewhere along the line because it has been over 6 weeks (okay, only a day over) since we were told Glo was approved and to submit ideas for her wish. I received a response with in the hour that we should expect a call within the next 1-1 1/2 weeks to set up a meeting!
I do try to remind myself (and the kids) to be patient and thankful because this is an AMAZING gift and they do not HAVE to do this. Some days it is just too much excitement to handle though! Hopefully plans will be in the works soon!
Have wonderful night!!!!

 

[Mom2mitokids]

Honestly, I tried and I tried to be patient. It just got too hard! I finally emailed the MAW chapter to make sure I hadn't dropped the ball somewhere along the line because it has been over 6 weeks (okay, only a day over) since we were told Glo was approved and to submit ideas for her wish. I received a response with in the hour that we should expect a call within the next 1-1 1/2 weeks to set up a meeting!
I do try to remind myself (and the kids) to be patient and thankful because this is an AMAZING gift and they do not HAVE to do this. Some days it is just too much excitement to handle though! Hopefully plans will be in the works soon!
Have wonderful night!!!!

Boy.... I know the wait is hard. We are still not 100% at our March dates. They said they will let me know in 4 weeks, but they didn't see why we couldn't have those date. I mean..it's 6 month away. I want to make kylee's BBB reservation.