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Old 01-10-2009, 10:00 PM   #151
oklamomof4boys
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A quick question

Does GKTW have hair dryers in the villa's?

Mandy
Yes, they do!
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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
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Old 01-11-2009, 07:16 AM   #152
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Yes, they do!
Thank you
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Old 01-11-2009, 09:07 AM   #153
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I hope Amber doesn't mind me posting about her daughter. A while back she had given me the link to her family blog- so I am able to read up on little Savannah. I know her computer time is limited, so I thought I'd let you all know what is going on.

Savannah is still in the hospital- they have run all sorts of tests and really don't seem to know anything yet. She is still losing weight- she has a voracious appetite and even though she still vomits quite a bit, with her high calorie intake she should be gaining weight. The big tests have come back normal ( EEG, ECHO, EKG- I think those were the main ones). She keeps having little things show up on labs ( poor little girl has given so much of her blood)- but nothing that really indicates something specific. She still has that beautiful smile in between all of her tests. It sounds like Amber has a great support system there- but they all certainly need our prayers. I'm sure she is completely exhausted.

Amber, I sure hope I haven't stepped on your toes by posting about your daughter- I just know that everybody is concerned and you can use all the prayers possible. I hope I got all the details correct!

Carol
Thanks Carol for posting You did GREAT! If you would like our blog link I posted it in Sebastian's Trip report. THANKS SO MUCH YA'LL. It really means the world to me to have your support and prayers. It was a bad night last night. Crappy nurse treating me like this is all my fault.
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Old 01-11-2009, 09:50 AM   #154
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Thanks Carol for posting You did GREAT! If you would like our blog link I posted it in Sebastian's Trip report. THANKS SO MUCH YA'LL. It really means the world to me to have your support and prayers. It was a bad night last night. Crappy nurse treating me like this is all my fault.
I am sorry your having a tough go in the hospital right now, Jake is in the hospital to due to vomiting and belly pain issues, and for us what makes it so hard is no one can do anything to make him feel better. We are very very lucky that Jake's nurses are so wonderful to all of us, I can not even begin to imagine what it would be like if the nurses were not....

I hope it is a short stay and they you walk out of their with some sort of answer to what is going on. Hang in and know you are doing what is best for your child...
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Old 01-11-2009, 01:08 PM   #155
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Thanks Carol for posting You did GREAT! If you would like our blog link I posted it in Sebastian's Trip report. THANKS SO MUCH YA'LL. It really means the world to me to have your support and prayers. It was a bad night last night. Crappy nurse treating me like this is all my fault.
hugs and prayers for answers
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Old 01-11-2009, 06:58 PM   #156
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Hugs and prayers, Amber - you KNOW it isn't anything you did. There are ignorant people everywhere
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Old 01-11-2009, 09:10 PM   #157
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It's okay to get mad about righteous causes like that. My dh today when I told him said that some kids, like Lydia, are in a way better off than Lauren since their ordeal is more or less behind them (not totally usually) but Lauren will always be in a wheelchair, sad as that sounds.... She seems like such a wonderful person. Give her a good hug, Mary, and tell her that we think she awesome and brave!
Thank you for saying that. We do love Lauren's attitude...which is awesome...99.9% of the time. Better than me!

I think that all issues are different, I guess. Lauren has not spent too, too much time in the hospital. She has never had chemo. She has never had a seizure. In fact...she really has been pretty healthy. Well, except that she is severely disabled. Can't walk...all of that mess. Even she says she is pretty normal. Crazy girl!

And speaking of Lauren...I am working on a little project for her...but more on that in a few minutes...

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I hope all of you who were disgusted by the Grey's anatomy show WILL write the local station, the show's producer (check the web site) and copy the letters to the editor column of your local paper. If WE don't raise the issues, who will? (Agressive? Heck YEAH! I have an "adopted" granddaughter with brain damage and bipolar disorder - and have learned 'making noise' is the only way to change things. Eventually. Slowly. But things DO change.)

It was a beautiful day at Give Kids the world today. I packed gift bags, this morning, in the warehouse. Maybe one of you will get a bag packed by me, lol. Beat my previous record of 17 in a shift - 25! Did I mention you should bring an empty suitcase for the stuff that will magically appear in your villa?

PS. Wendy, you were right, it IS the economy. They've stopped giving the volunteers an ice cream coupon, too, and the desk person told me it was for financial reasons. It seems that, like every other charity, donations are down. It was ok with me - I'd much rather there be enough for the kids.

PPs the post cards were mailed this evening at the Grand Floridian.
Yes...we do need to write a letter! I am going to seriously add that to my list.

I hate that charities are having issues with finances. That is awful!! I need to support GKTW. Can we just donate directly to them? I love that place!!!

Thank you for all of your help!!!!

Quote:
Originally Posted by oklamomof4boys View Post
I hope Amber doesn't mind me posting about her daughter. A while back she had given me the link to her family blog- so I am able to read up on little Savannah. I know her computer time is limited, so I thought I'd let you all know what is going on.

Savannah is still in the hospital- they have run all sorts of tests and really don't seem to know anything yet. She is still losing weight- she has a voracious appetite and even though she still vomits quite a bit, with her high calorie intake she should be gaining weight. The big tests have come back normal ( EEG, ECHO, EKG- I think those were the main ones). She keeps having little things show up on labs ( poor little girl has given so much of her blood)- but nothing that really indicates something specific. She still has that beautiful smile in between all of her tests. It sounds like Amber has a great support system there- but they all certainly need our prayers. I'm sure she is completely exhausted.

Amber, I sure hope I haven't stepped on your toes by posting about your daughter- I just know that everybody is concerned and you can use all the prayers possible. I hope I got all the details correct!

Carol
Carol...

thank you so much for the update. I have been praying for them. I just hate that! Too much for one person to deal with! Poor Amber!!!

I will keep praying for her family. Thanks for updating us.

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Originally Posted by AmberGreenawalt View Post
Thanks Carol for posting You did GREAT! If you would like our blog link I posted it in Sebastian's Trip report. THANKS SO MUCH YA'LL. It really means the world to me to have your support and prayers. It was a bad night last night. Crappy nurse treating me like this is all my fault.
Ah..Hey, Amber!!

I hope you reported that nurse. That just infuriates me!

Hang in there!

Quote:
Originally Posted by dmbfan View Post
I am sorry your having a tough go in the hospital right now, Jake is in the hospital to due to vomiting and belly pain issues, and for us what makes it so hard is no one can do anything to make him feel better. We are very very lucky that Jake's nurses are so wonderful to all of us, I can not even begin to imagine what it would be like if the nurses were not....

I hope it is a short stay and they you walk out of their with some sort of answer to what is going on. Hang in and know you are doing what is best for your child...
I am sorry you are having trouble with Jake! I hate that you can't just fix it. I am really sorry!! But I am glad you have wonderful nurses!
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Old 01-11-2009, 09:17 PM   #158
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Thank you for saying that. We do love Lauren's attitude...which is awesome...99.9% of the time. Better than me!

I think that all issues are different, I guess. Lauren has not spent too, too much time in the hospital. She has never had chemo. She has never had a seizure. In fact...she really has been pretty healthy. Well, except that she is severely disabled. Can't walk...all of that mess. Even she says she is pretty normal. Crazy girl!

And speaking of Lauren...I am working on a little project for her...but more on that in a few minutes...
Ooh, now you've got me all curious!
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Old 01-11-2009, 09:21 PM   #159
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Lauren has had me working on a little project for her...and I wanted to share it with you guys.

I am not even going to post this on my TR...but I wanted you guys to see it.

Lauren is a member of her student council...student government...whatever you call it these days. She always makes fun of me for calling it student council!

Anyway...they "randomly" assigned her...at the beginning of the year...before we knew about her Wish Trip dates, etc...to head up the fundraiser that her school does each year for Make a Wish!!!

Every day her school has this TV announcement program at her school (about 2500 students) and she asked them if we could show her MAW video...and they said YES! But, Lauren wanted me to change it up a little. She wanted more information about MAW on it and wanted to add her friends MAW trip pictures, too. And she wanted to add something so that the teenagers would want to donate! So we did...a lot of it is the same as the first video I did, but not all of it.

Here is the link if you guys want to see it!

Fundraiser Video for Lauren

The other girl is Mary Claire and her Mom gave me permission to post this. Lauren and Mary Claire are best friends...and are both Wish Kids! (Once a wish kid, always a wish kid!) Mary Claire got her wish when she was 8. She has muscular dystrophy. She was diagnosed at age 7. She is no longer walking. Mary Claire plays power soccer (wheelchair soccer) with Lauren.

I hope you guys have an awesome night!!
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Old 01-11-2009, 09:24 PM   #160
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Ooh, now you've got me all curious!
Sorry...probably a let down!
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Old 01-11-2009, 09:30 PM   #161
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No, no letdown at all!! I loved it! I'm so impressed that Britney Spears took time to meet that little girl! It looked like those girls had lots of fun! Those videos always makes me a bit weepy, lol. I've watched a few other ones on youtube and I get teary eyed every time. Good job, Mary!!
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Old 01-11-2009, 09:40 PM   #162
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No, no letdown at all!! I loved it! I'm so impressed that Britney Spears took time to meet that little girl! It looked like those girls had lots of fun! Those videos always makes me a bit weepy, lol. I've watched a few other ones on youtube and I get teary eyed every time. Good job, Mary!!
Yeah...I sorta doubt Britney Spears does that anymore? Or maybe MAW probably doesn't really ask her to? Bless her heart, though, seriously. I feel bad for Britney! She obviously has a good heart if she was granting wishes!!

Yeah...Lauren's dad got teary over the star thing...Which always makes me cry! And I LOVE that song!
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Old 01-11-2009, 11:26 PM   #163
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Hi,

We are a new wish trip family to the boards and I just found out on Friday that we are going to Disney on February 1st!!! Well, we are still waiting for the doctor to sign the final approval so the plane tics can be reserved, but our Wish Coordinator told us that we have reservations at GKTW - so it seems like we're pretty set for the February 1st. Hurray!!!! I found a link to the dis boards from MDC and was so excited to find the Wish Trip Thread. I have read a great deal of it and it's great to know a lot of what to expect.


My daughters are HUGE Little House on the Praire fans, so we're going to call ourselves Mary, Laura, Ma and Pa. Actually we often do call ourselves that!!!


Mary is our wish child and is 3 1/2 years old. She was diagnosed with a rare autoimmune disease last May called Juvenile Dermatomyositis. It's a muscle weakening disease with skin involvement and sometimes other systems as well. She had a persistant rash on her cheeks that we went to see the dermatologist for thinking we would get a cream..... and then we got this diagnosis. It was only in hindsight that I realised she was moving slower - taking longer to get up the stairs and climb into her car seat. I had attributed it to just being two years old and interested in every piece of dirt along the way. She was also tired, but she was also giving up her nap at the time, so I just attributed it to that. In the two weeks between diagnosis and starting treatment, she got a lot weaker. The worst moment was when she put her foot up on the step and said "mommy, I'm stuck" and couldn't get up the stairs.

She had a port put in (as well as a muscle biopsy) and started on IV steroids as well as low dose chemo, oral steroids and a few other meds. She is immunosupressed and we are also limited in being able to go outside because the sun can flare her disease and her meds make her sun-sensitive - a double danger. Anytime we go out she wears sunscreen, sunhat and sunglasses. Fortunately treatment has gone very well for her and she has regained much of her strengh back. We are so lucky to live near one of the best doctors for her disease and have a wonderful home health nurse who did her treatments. It was Mary's nurse who told us about applying for a wish.


Laura is Mary's twin sister and has been a fabulous support to her sister. It
was very hard for her when Mary went for her MRI and surgerys in the beginning, because they had never really been apart. It was only in anticipation of the surgery that we did a quick Ma & Mara, Laura & Pa separate outings. Mary said to me then "Where is Laura? She's my best friend." Laura has become very scared about anything related to getting hurt during this time - it's so hard to understand what is going on with your twin when you are only three.

I'm Ma and I'm at home with the girls churning butter and such while Pa heads out to chop down the woods to build the log cabin (actually we are a little more modern than that LOL)


Mary and Laura are kind of unique Disney Wish Trippers because they don't actually know any of the characters - they had seen Pa's family movies of Disney World from when he was a child and that's why they wanted to go!!! They are very sensitive about scary parts of stories and so really haven't seen any of the disney stories. I was looking at a simple board book at the bookstore about the princesses last week thinking they might be intersted - however I knew they would be upset by Belle (a beast capturing her father), Cinderella (no mother), and Sleeping Beauty (they'd never touch apples again). They do know of the princesses and said they would talk to them, but were quite concerned about "guys with heads". Although I read in someones Trip Report that Frosty the Snowman was at GKTW Christmas , so that might just interest them in meeting someone "with a head".


I think we are going to do two days Magic Kingdom, one day epcot, one day sea world and one day Universal (because they LOVE the Seuss books). We are also pretty excited about Sea World, since one of Marys other wishs was "Wish to be a Fish".


I learned so much from reading here, but still have some questions of course, mostly relating to the sun. Fortunately we are going (intentionally) at a lower sun time of year and we'll be well covered, but there are still some mid day times that Mary should be out of the sun. So here are the questions:

1) What is epcot like being indoors v.s. outdoors? Are the world pavillions (especially the kidcot stations) indoors or outdoors? Is The Seas exhibit indoors or out doors.

2) What are some good mid-day indoor activities at Magic Kingdom (I've already got small world).

3) What happens in line when you GAC says "wait out of sun"

4) It looks like the Carousel at GKTW is shaded - is that true?

5) I think the main shows we would want to see would be at Seaworld (least scary). Are there covered areas to see the shows? Are there some indoor exhibits?

6) From the seaworld website it looks like almost all the rides have a minimum of 42 inches - even the carousel!! Can that really be true??

7) Are all of the attractions at Seuss Landing in the sun or are there some that are not?

8) Does GKTW have bed rails? Will GKTW work with a low sodium diet?


Wow - that's really looong . Thanks for reading and I'm sure I'll have more questions as it gets closer.

O.K. - I just posted and it's pretty funny with a name like OrangeRabbit to be "earning my ears".
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Old 01-12-2009, 12:56 AM   #164
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Mary- that video is awesome!!
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Old 01-12-2009, 12:58 AM   #165
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I'm off to bed by my PTR is updated with some more BIG GIVE!!
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