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Old 08-27-2013, 05:39 PM   #466
terratalking
Earning My Ears
 
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Join Date: Nov 2012
Posts: 36

So I got a call today from Make a Wish -

My daughter was referred by her complex care doctor.

I've been mostly lurking around here since I first found DisBoards when we were planning a quick family trip this past January. At that time, my daughter had spent all of the fall in and out of the hospital and just wanted to meet Cinderella. We couldn't afford a long trip, but were able to pull enough funds together to get the whole family to Magic kingdom for two days - and she got to meet cinderella!!! It was amazing!

Fast forward to now - and she's had two life-threatening infections back to back this summer, and her medical team is in agreement that she is not likely to survive another one anytime soon. Her doctor had told me that he was going to refer her for MAW as a quality of life thing, because he knows that my own personal view on it was that I never wanted to have a kid "sick enough" to need a MAW.

It is a very bittersweet thing. on the one hand - I have so so so much hope that they are wrong and that my daughter will live a very long life. On the other, i have watched her battle back from insurmountable odds over the past few months, and in fact, one month ago today we were pretty sure we were going to lose her.

I know her one true wish is to go meet the princesses again -a nd "swim wif ariel even though I don't have a tail!!!"

I am sure I will have so much more to add once we get more firm info - but thought I'd at least do a quick intro of myself here on this thread since Ive been in the shadows getting so much good info for the past few days since I knew her doctor was putting in the referral.

Also - they said it would be about 4-6 weeks from this point before we hear anything else (like if she "qualifies", who her wish granters will be, etc.) - is that a pretty standard timeline?

Anyways - thanks for all the great info you ladies put here! Hoping to be out of the shadows more and more active!

If you'd like to read more about Kendall's story - her story is mostly what I blog about at

www dot terratalking dot com(sorry i can't post links yet!)

She also has a prayer page on facebook at

facebook dot com/HopeForKendall

Have a beautiful day!

terra
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Trip Dreams are Made of for my beautiful girls:
Kealey Grace - 11 yrs old, Karissa Lynn - 9yrs old, Kaylen Hope - 6 yrs old, and Kendall Quinn - 4 yrs old, brave mito warrior


To read more about Kendall's story - check out her Facebook Page
Hope for Kendall
Or read more on my blog: Terra Talking

Kendall's MAW trip PTR - "Part of Her World"
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Old 08-28-2013, 11:05 PM   #467
Monie3
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Quote:
Originally Posted by Redwavess View Post

Hooray for asking for a Halloween costume!! That is so exciting!! Sounds like he is excited for the wish trip!! Maybe he has wish trip of the brain like mom does!!!

I haven't heard of the Pirates League... I hope that someone hear has and is able to give you ideas and suggestions about it!!! Sounds Awesome!!

Happy Weekend!!

Madeline
New question! Still don't know about the Pirate League. Another Dream Family told me to email our Dream coordinator, but I have not heard back. I was reading a blog and I noticed that someone had made a request of friends to send things from the GKTW wish list on their trip. I thought that was amazing idea, so I posted on my Facebook the wish list. Since we will be driving to our dream, we will be able to bring a lot. I have had wonderful feedback. Many people are asking what is most needed. For those of you who have been, what do you think I should say? GKTW sounds so awesome, we just wanted to be able to give back in some way. Second question.. I have been noticing that our trip will correspond with the Food and Wine fest. What is it all about? I've always heard about it, but know nothing about it. I have read that the crowds can be crazy.
I hope everyone is enjoying back to school time!

Sent from my iPad using DISBoards
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Old 08-29-2013, 12:07 AM   #468
cantwaittoseemickey
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Hi Terra! I follow Kendall's page. It's little it from p2p. I am so excited to follow Kendalls Wish. I hope and pray they are wrong and that you all have a most amazing trip!!!
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Old 08-30-2013, 01:15 AM   #469
Redwavess
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Join Date: Nov 2010
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Quote:
Originally Posted by terratalking View Post
So I got a call today from Make a Wish -

My daughter was referred by her complex care doctor.

I've been mostly lurking around here since I first found DisBoards when we were planning a quick family trip this past January. At that time, my daughter had spent all of the fall in and out of the hospital and just wanted to meet Cinderella. We couldn't afford a long trip, but were able to pull enough funds together to get the whole family to Magic kingdom for two days - and she got to meet cinderella!!! It was amazing!

Fast forward to now - and she's had two life-threatening infections back to back this summer, and her medical team is in agreement that she is not likely to survive another one anytime soon. Her doctor had told me that he was going to refer her for MAW as a quality of life thing, because he knows that my own personal view on it was that I never wanted to have a kid "sick enough" to need a MAW.

It is a very bittersweet thing. on the one hand - I have so so so much hope that they are wrong and that my daughter will live a very long life. On the other, i have watched her battle back from insurmountable odds over the past few months, and in fact, one month ago today we were pretty sure we were going to lose her.

I know her one true wish is to go meet the princesses again -a nd "swim wif ariel even though I don't have a tail!!!"

I am sure I will have so much more to add once we get more firm info - but thought I'd at least do a quick intro of myself here on this thread since Ive been in the shadows getting so much good info for the past few days since I knew her doctor was putting in the referral.

Also - they said it would be about 4-6 weeks from this point before we hear anything else (like if she "qualifies", who her wish granters will be, etc.) - is that a pretty standard timeline?

Anyways - thanks for all the great info you ladies put here! Hoping to be out of the shadows more and more active!

If you'd like to read more about Kendall's story - her story is mostly what I blog about at

www dot terratalking dot com(sorry i can't post links yet!)

She also has a prayer page on facebook at

facebook dot com/HopeForKendall

Have a beautiful day!

terra
Prayers for your little one and the whole family during these tough times.

As far as timelines go I have heard that you and or the doctors can let Make a Wish know if there are health issues that would need to speed up the wish process.

Please let me know if you have any questions or I can help in any way.

Hugs to you,

Madeline
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Me Madeline Wife, Mom, & 1st Grade Teacher Extraordinare Husband Jason Michael 15 Mallory 5

http://www.disboards.com/showthread.php?t=2602026 Mallory Makes a Magical Wish! -- UPDATE -- I wish for... Rudolph!? pg. 4 Post #46

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Old 08-30-2013, 01:18 AM   #470
Redwavess
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Originally Posted by JasmineOtt View Post
Haven't been on in awhile. Last I wrote was that we were supposed to meet with our wish granters on August 11th. We went to Yosemite as a huge family trip from August 5th-9th. Jesse spiked a fever and had to be on oxygen (meaning we had to run the generator to run the oxygen concentrator for many of the "non-approved" hours of the day). Prior to the trip, my mom called and changed our wish granters appointment, which I guess hadn't been confirmed with the second wish granter anyway. So now we are scheduled for this weekend! September 1st! Finally. We're so excited still, though the initial excitement has been pretty drawn out... I'm sure I'll be back with so many more questions. But for now, I'm so happy for everyone planning, and hearing dates and info, and returning from their trips!
Hooray for this weekend, Hooray for the wish granters coming!!

You must all be so excited!! Let us know how everything goes!!!

Happy Wishing,

Madeline
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Me Madeline Wife, Mom, & 1st Grade Teacher Extraordinare Husband Jason Michael 15 Mallory 5

http://www.disboards.com/showthread.php?t=2602026 Mallory Makes a Magical Wish! -- UPDATE -- I wish for... Rudolph!? pg. 4 Post #46

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Old 08-30-2013, 01:24 AM   #471
Redwavess
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Join Date: Nov 2010
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Posts: 427

Quote:
Originally Posted by Monie3 View Post
New question! Still don't know about the Pirate League. Another Dream Family told me to email our Dream coordinator, but I have not heard back. I was reading a blog and I noticed that someone had made a request of friends to send things from the GKTW wish list on their trip. I thought that was amazing idea, so I posted on my Facebook the wish list. Since we will be driving to our dream, we will be able to bring a lot. I have had wonderful feedback. Many people are asking what is most needed. For those of you who have been, what do you think I should say? GKTW sounds so awesome, we just wanted to be able to give back in some way. Second question.. I have been noticing that our trip will correspond with the Food and Wine fest. What is it all about? I've always heard about it, but know nothing about it. I have read that the crowds can be crazy.
I hope everyone is enjoying back to school time!

Sent from my iPad using DISBoards
That is SO awesome that you are going to bring things from family and friends to Give Kids the World!! That's a GREAT idea!! And something I hadn't heard of before.

I would think anything on the wish list Give Kids the World would appreciate!! What an awesome way to give back!!

I hope you are able to figure out the Pirates League question. I don't have any experience with that.

Have a good weekend,

Madeline
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Me Madeline Wife, Mom, & 1st Grade Teacher Extraordinare Husband Jason Michael 15 Mallory 5

http://www.disboards.com/showthread.php?t=2602026 Mallory Makes a Magical Wish! -- UPDATE -- I wish for... Rudolph!? pg. 4 Post #46

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Old 09-01-2013, 08:43 PM   #472
Monie3
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5 weeks from today we will be there! I am so excited! Everyone is giving me favorites! Has anyone eaten at the Sci-Fi diner? Phillip thought it sounded awesome! Also, we will be there for our anniversary . We are going out to lunch with the family (my in laws are joining us that day) but thought that after the evening we would go out later in the evening. ( We have plenty of babysitters). Any ideas for places not at the parks? Maybe in CityWalk or Downtown Disney?

Sent from my iPad using DISBoards
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GKTW, Christopher's Dreams Come True Planning the trip!
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Old 09-02-2013, 12:37 AM   #473
JasmineOtt
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Met with Jesse's wish granters!

I wrote a bit on our meeting with the wish granters... and I think I can post links now.

http://www.disboards.com/showthread....6#post49451996
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Old 09-02-2013, 01:02 AM   #474
JasmineOtt
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Quick question...

I asked the wish granters about the tickets people normally get. From what I've read here it sounds like it's generally 3 days at WDW, 2 days at Universal and 1 day at Sea World. She said that it's only 1 day at Universal, totaling 5 days, leaving one day for travelling on each end.

Just wanted to clarify my info if anyone can help...

We were asking for all WDW days because Jesse can't really do much of Universal and we would like to slow down our days and make them a little easier on him, but still be able to see as much Disney as we can.

Thanks in advance!
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Old 09-02-2013, 02:10 AM   #475
taliasmom
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Quote:
Originally Posted by JasmineOtt
I asked the wish granters about the tickets people normally get. From what I've read here it sounds like it's generally 3 days at WDW, 2 days at Universal and 1 day at Sea World. She said that it's only 1 day at Universal, totaling 5 days, leaving one day for travelling on each end.

Just wanted to clarify my info if anyone can help...

We were asking for all WDW days because Jesse can't really do much of Universal and we would like to slow down our days and make them a little easier on him, but still be able to see as much Disney as we can.

Thanks in advance!
Its a two day to universal, but yes, for the most part you need to get it done in five days. I wouldn't discount universal too quickly, we had a lot of great times at the other parks and Talia is about as physically restricted as it gets. But there is just no way to do it all. We got close!
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Old 09-02-2013, 10:46 AM   #476
Monie3
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Happy Labor Day!!!!!!!

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Old 09-04-2013, 10:58 PM   #477
Monie3
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Well, I heard from our Dream Assistant and it wasn't good news. There are no openings at the Pirate's League during our trip. She is going to try someone at GKTW to see if they can work it out, so here's hoping. Hopefully everyone's countdown calendar will be ready this weekend. We leave 32 days from today! Even if the Pirate's League doesn't work out, this trip is a true gift and we are going to enjoy every moment! Thank you all for all the support!

Sent from my iPad using DISBoards
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GKTW, Christopher's Dreams Come True Planning the trip!
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Old 09-05-2013, 12:30 PM   #478
terratalking
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Oh no!!! I'm so sorry to hear that it isn't the best news - but keeping my fingers crossed that GKTW can help out to make it the perfect trip for everyone! 32 days! that seems so soon - i'm sure it's going to fly by!


terra
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Trip Dreams are Made of for my beautiful girls:
Kealey Grace - 11 yrs old, Karissa Lynn - 9yrs old, Kaylen Hope - 6 yrs old, and Kendall Quinn - 4 yrs old, brave mito warrior


To read more about Kendall's story - check out her Facebook Page
Hope for Kendall
Or read more on my blog: Terra Talking

Kendall's MAW trip PTR - "Part of Her World"
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Old 09-05-2013, 01:57 PM   #479
JasmineOtt
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Yay!

Quote:
Originally Posted by Monie3 View Post
Well, I heard from our Dream Assistant and it wasn't good news. There are no openings at the Pirate's League during our trip. She is going to try someone at GKTW to see if they can work it out, so here's hoping. Hopefully everyone's countdown calendar will be ready this weekend. We leave 32 days from today! Even if the Pirate's League doesn't work out, this trip is a true gift and we are going to enjoy every moment! Thank you all for all the support!

Sent from my iPad using DISBoards

Now you're down to 31 days!
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Old 09-05-2013, 04:34 PM   #480
Monie3
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Thank you so much for your kind words! The excitement at the Riik house is really building. I didn't believe it was going to really happen for so long, but I feel that in 31 days, we will be there!! ( this is where I would like to put pixie dust, but I can't figure out how to do that!). Christopher is going to be a pirate for Halloween no matter what, so if the Pirate's League doesn't wok out, he will still get some things for his costume at the "Yo Ho" ride! I really don't think anything can put a damper on this trip. I enjoy reading everyone's posts so much. I feel like I am part of one large, very special family. Thank you everyone for sharing I our life and allowing us to share in yours!

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