Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FOUR!

[Owensheart]

We just spent the last week at Lucile Packard Children's Hospital at Stanford. Owen had a cardiac cath and MRI to determine if he would finally qualify for the next open heart surgery for his single ventricle (the Fontan). We didn't get the news we were looking for, as he does NOT qualify at this time. We will continue to treat him with superhuman medication doses and increased his oxygen from 1 to 2.5 liters. While it wasn't the news we wanted to hear.. it is all part of a bigger plan. He is doing pretty well clinically right now and so we will take the next six months and enjoy them.

In six months, we will travel back to Stanford for another cath and mri and go from there.

It's hard to not get caught up in predicting the future. At some point, if the Fontan never becomes an option, transplant will be the only road. As long as we have options, I can keep my optimism!

I'm going to call our wish granters this week and see if they are making progress on dates. They need to reserve the portable oxygen concentrator for the plane at least three months in advance since he'll need about 8 extra batteries to last the 5.5 hour flight. It's hard enough to find a POC with two extra batteries, let alone 8.

Thanks for following along.

 

[LindaBabe]

A heartfelt THANK YOU to those of you who have prayed for our family. Pete's Dad died Friday early AM. Even if we had jumped in the car when we first found out, he was so ill, we would not have made it in time. He had a wonderful,full life. He will be missed. to those of you who have experienced this same pain. Our DIS family is the best!

I am so sorry for your family's loss. He will live forever in your hearts.

We just spent the last week at Lucile Packard Children's Hospital at Stanford. Owen had a cardiac cath and MRI to determine if he would finally qualify for the next open heart surgery for his single ventricle (the Fontan). We didn't get the news we were looking for, as he does NOT qualify at this time. We will continue to treat him with superhuman medication doses and increased his oxygen from 1 to 2.5 liters. While it wasn't the news we wanted to hear.. it is all part of a bigger plan. He is doing pretty well clinically right now and so we will take the next six months and enjoy them.

In six months, we will travel back to Stanford for another cath and mri and go from there.

It's hard to not get caught up in predicting the future. At some point, if the Fontan never becomes an option, transplant will be the only road. As long as we have options, I can keep my optimism!

I'm going to call our wish granters this week and see if they are making progress on dates. They need to reserve the portable oxygen concentrator for the plane at least three months in advance since he'll need about 8 extra batteries to last the 5.5 hour flight. It's hard enough to find a POC with two extra batteries, let alone 8.

Thanks for following along.

Fingers crossed that the wish granters can get it together for Owen, soon.

 

[Menfusse]

Hello everyone. Trying to keep up with everything, but I just don't get a chance to be on here very much.

We got our pamphlet from GKTW with our names and such. Makes it very real! We are leaving in the wee hours of the morning on the 19th.

I wonder if anybody has any suggestions for what days are best to go where, being there from a Saturday through a Thursday?

We have not made any plans and I haven't really looked through any sites. I can't afford to do a paid site, and since we are complete Disney virgins and just thankful to be going on what will probably be a once in a lifetime vacation for us, I figured we'd just take it as it comes and enjoy it no matter what.

But, reading through posts about touring plans and things...I'm worried we should at least have some kind of basic plan? I don't really know where to start?

 

[jon03015]

Today is the day!!! Austin get's his kidney transplant today!!! Just about to go down to surgery. Excited and nervous.

 

[chelleydi77]

Today is the day!!! Austin get's his kidney transplant today!!! Just about to go down to surgery. Excited and nervous.

I hope everything goes well! Y'all are in my prayers!

 

[IrishIz]

Hello everyone. Trying to keep up with everything, but I just don't get a chance to be on here very much.

We got our pamphlet from GKTW with our names and such. Makes it very real! We are leaving in the wee hours of the morning on the 19th.

I wonder if anybody has any suggestions for what days are best to go where, being there from a Saturday through a Thursday?

We have not made any plans and I haven't really looked through any sites. I can't afford to do a paid site, and since we are complete Disney virgins and just thankful to be going on what will probably be a once in a lifetime vacation for us, I figured we'd just take it as it comes and enjoy it no matter what.

But, reading through posts about touring plans and things...I'm worried we should at least have some kind of basic plan? I don't really know where to start?

You really don't always need a plan. For our trip we have 2 things planned....Bibbidy Bobbidy Boutique and lunch at the Royal Table (not even sure how I pulled that off since I only called a week or so ago and our trip is REALLY soon). That was planned because it needed to be.

We have no other plans.

What I would recommend is planning on day at Magic Kingdom. It's really the main park and quite wonderful.

If you go to Animal Kingdom we have found that you can do that in a short period of time. We don't really do a lot there but the safari is great. So if you can get there early and knock it out you can probably hit a portion of Epcot or Hollywood Studios afterwards. Epcot has the countries and Innoventions areas. Innoventions is a great learning space about technology, the earth and so much more. The countries can be neat but if I needed to skip something that is probably what I would skip.

We don't think we are going to be at Universal much. Our MAW is for my 7 year old daughter and it doesn't look like she's going to get a lot out of it. So we will play that one by ear.

Are you getting the 3 at WDW, 2 at Universal and 1 at SW?

 

[Menfusse]

You really don't always need a plan. For our trip we have 2 things planned....Bibbidy Bobbidy Boutique and lunch at the Royal Table (not even sure how I pulled that off since I only called a week or so ago and our trip is REALLY soon). That was planned because it needed to be.

We have no other plans.

What I would recommend is planning on day at Magic Kingdom. It's really the main park and quite wonderful.

If you go to Animal Kingdom we have found that you can do that in a short period of time. We don't really do a lot there but the safari is great. So if you can get there early and knock it out you can probably hit a portion of Epcot or Hollywood Studios afterwards. Epcot has the countries and Innoventions areas. Innoventions is a great learning space about technology, the earth and so much more. The countries can be neat but if I needed to skip something that is probably what I would skip.

We don't think we are going to be at Universal much. Our MAW is for my 7 year old daughter and it doesn't look like she's going to get a lot out of it. So we will play that one by ear.

Are you getting the 3 at WDW, 2 at Universal and 1 at SW?

Yeah, we get 3 day tickets to WDW, then the universal and sw tickets. We aren't planning to do universal at all. Emily is 5 and I don't think there is much she'd enjoy really there either, plus the height restrictions on a lot of the rides knock her out anyway, lol. She's a squirt. Plus, she specified in her wish for a trip to the beach, so we'll have to plan a day for that. She does want to do SW though, specifically feeding the dolphins.

 

[katieb4]

Today is the day!!! Austin get's his kidney transplant today!!! Just about to go down to surgery. Excited and nervous.

Prayers for your little guy and the big guy donating!!

We're skipping universal too.....our wish girl is also a peanut and there really isn't much she could do there...and I know she is going to LOVE the beach!! Mom and Dad would love to do HPotter.....hopefully some day we will!

 

[Happy Dreams1]

We just got a call from MAW and they said that POSSIBLE dates are August 22-28!!!!! OMG We are so shocked! We just met with the wish granter two months ago and we may be leaving this month! We gotta start planning! Maroo, we got dates!

 

[angcmom]

Hello everyone. Trying to keep up with everything, but I just don't get a chance to be on here very much.

We got our pamphlet from GKTW with our names and such. Makes it very real! We are leaving in the wee hours of the morning on the 19th.

I wonder if anybody has any suggestions for what days are best to go where, being there from a Saturday through a Thursday?

We have not made any plans and I haven't really looked through any sites. I can't afford to do a paid site, and since we are complete Disney virgins and just thankful to be going on what will probably be a once in a lifetime vacation for us, I figured we'd just take it as it comes and enjoy it no matter what.

But, reading through posts about touring plans and things...I'm worried we should at least have some kind of basic plan? I don't really know where to start?

Some things you can do that will be helpful will be to start gathering information, such as park hours, fireworks show times, parade times and the schedule of events at GKTW, and start from there. I know for us, there are a few events that we would like to attend at GKTW, so those will definitely be shorter park days. Our dates "should" be arriving Tuesday and departing the following Thursday (we are going to extend our trip and stay somewhere else beginning Monday night) so I began with filling in what we wanted to do at GKTW.

I would also write down the "don't miss" things that you the girls really want to do. Depending on the parks, you'll want to check out the hours they are open.

Typically, I am a "go with the flow" type of person, but I also know that this will be a once in lifetime trip for our family so a little bit of preparation upfront will help in the long run. I don't subscribe to a paid site....I think this site is the absolute best and have learned so much from it.

I know your family will have a great trip!

 

[Happy Dreams1]

So, as we are approaching our trip, are there any "Must-do's" at GKTW for teenagers? Remember, I'm a child at heart.

 

[imkksmom]

I can't believe 6 months have gone by already. It looks like we are traveling in October. I'm not sure if I'm posting right because no one ever responds when I post lol.

I know there are some people who make Disney outfits I'm wondering if there are any discounts available? Thanks

 

[angcmom]

So, as we are approaching our trip, are there any "Must-do's" at GKTW for teenagers? Remember, I'm a child at heart.

When I showed my son the schedule of events at GKTW, he said "oh, I really want to go to the giant Candy Land game." He was dead serious. He is 13.

 

[Happy Dreams1]

When I showed my son the schedule of events at GKTW, he said "oh, I really want to go to the giant Candy Land game." He was dead serious. He is 13.

aaaaawww. lol

So what's that?

 

[21hearts]

Hello! My name is Melissa and my daughter Rachel is being granted a wish. We kind of did things backwards because her genetics doctor sent the paperwork over two months too early and the make-a-wish people didn't realize it until I pointed out that Rachel wasn't two and a half yet (she will be on the 22nd of this month). The wish granter I spoke to did tell me that yes Rachel qualifies for a wish but we can't start the paperwork until the 22nd of this month. I've been lurking on this thread for a few months and I LOVE to see everyone's wishes coming true! I've gotten teary eyed more then once reading this thread.

Rachel was born with Proteus Syndrome - which affects her development, brain/skull and physically (right side of body is bigger length & width of her left).

I look forward to sharing our wish journey with everyone and getting to experience yours as well.

 

[livndisney]

I can't believe 6 months have gone by already. It looks like we are traveling in October. I'm not sure if I'm posting right because no one ever responds when I post lol.

I know there are some people who make Disney outfits I'm wondering if there are any discounts available? Thanks

There is no selling allowed on the DIS. But you may want to take a look at Ebay or Etsy. There are some cute Disney clothes.

You can also check Walmart. They usually have Disney tees for under 10.00. You can also buy plain tees and do some iron ons. There is a creative board here that can help you design the iron ons.

 

[Happy Dreams1]

I'm getting really excited for this trip! I'm even excited doing my summer project.

I have a few questions, though. How's the heat in Orlando during late August? Does it really rain A LOT? What are the types of fireworks they're displaying? You see, we haven't been to WDW, in 12 years, so we're pretty much going as newbies.

 

[Happy Dreams1]

Hello! My name is Melissa and my daughter Rachel is being granted a wish. We kind of did things backwards because her genetics doctor sent the paperwork over two months too early and the make-a-wish people didn't realize it until I pointed out that Rachel wasn't two and a half yet (she will be on the 22nd of this month). The wish granter I spoke to did tell me that yes Rachel qualifies for a wish but we can't start the paperwork until the 22nd of this month. I've been lurking on this thread for a few months and I LOVE to see everyone's wishes coming true! I've gotten teary eyed more then once reading this thread.

Rachel was born with Proteus Syndrome - which affects her development, brain/skull and physically (right side of body is bigger length & width of her left).

I look forward to sharing our wish journey with everyone and getting to experience yours as well.

Hi! I bet you're very excited for them to start the paperwork and finally get things moving! I also love to read the trip reports! Is that your daughter on your profile pic? She looks adorable!

 

[livndisney]

I'm getting really excited for this trip! I'm even excited doing my summer project.

I have a few questions, though. How's the heat in Orlando during late August? Does it really rain A LOT? What are the types of fireworks they're displaying? You see, we haven't been to WDW, in 12 years, so we're pretty much going as newbies.

HOT! I will give you an example, I just stopped in at Downtown Disney. I was there less than an hour, 15 minutes of that in a/c and was drenched in sweat.

Make use of Fastpass and evening hours. Expect afternoon showers. They don't usually last long. Do not expect the shower to cool things off. Expect it to be humid! Plan air conditioned lunches/breaks. Do one outside thing and then an indoor thing. Most lines are covered and some are airconditioned.

 

[Happy Dreams1]

HOT! I will give you an example, I just stopped in at Downtown Disney. I was there less than an hour, 15 minutes of that in a/c and was drenched in sweat.

Make use of Fastpass and evening hours. Expect afternoon showers. They don't usually last long. Do not expect the shower to cool things off. Expect it to be humid! Plan air conditioned lunches/breaks. Do one outside thing and then an indoor thing. Most lines are covered and some are airconditioned.

Okay, thanks. I live in Puerto Rico, so we're kinda used to humidity. I guess the GAC will help all of that, plus the magic button. Yeah, I kinda expected for someone to say "afternoon showers."