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Old 01-09-2009, 11:11 PM   #136
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Originally Posted by AmberGreenawalt View Post
One woman at Disney who was next to us at a parade was appalled that Sebastian got a wish when he isn't "terminal"

If MAW only had a certain number of wishes they could grant then we would not have sought one for Sebastian. But it wasn't like him having his wish was keeping another sicker child from having theirs. KWIM?

WOW, I would have slugged someone. I really think I would. If they knew half the crap our children go through each day, and how their da** children stair at ours, and the therapy and the..... Well you all know, I'm not saying anything you don't, but I swear some people deserve to be hung by their toenails.

Have I ever said how much I hate people? What is wrong with people forgetting about if you got nothing nice to say then shut the .... up!

Ok off my soap box, but if MAW didn't want to give my NON terminal child a wish they could have said NO at the beginning. However tell me another organization that will take care of a child that will have to do therapy every week for the rest of her lives, while "normal" people stay at her?
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Old 01-09-2009, 11:29 PM   #137
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This might be a first...but it is sorta on topic...I am commenting on a TV show!

Is anyone watching (or watched) Grey's Anatomy tonight (Thurs 1/8)...There is a little boy that has something wrong that has required 12 bowel resections and they are saying he won't qualify for a Wish! (I know...it is just a TV show)...

They keep saying that you "have to be dying"... It is really irritating me. MAW has changed so much in the past years...and the general public has not really caught up yet. And shows with story lines like that are not helping any!

Do you know what I am saying?

I know...that was another random thought from Maroo!

I did and I was shocked when I saw what they said to that child. Being the mother of an 8 year old that has not gone thru 12 bowel surgey's but has gone thru a couple, has a horriable small bowel disorder, that has sent him to the hospital at least 40-50 times in the last two years, that struggles with daily and violent vomiting, who eats nothing by mouth, who lives off an IV in order to live, really ticked to me off....to here them say "this is for kids that have life threaten issues and who are dying ( which by the way, what he had is considered life threaten), not you, your fine" and than Izzy say " oh are you trying to scam them", just made my mouth drop.

We are very blessed that my son's GI dr put him in for a wish, given all my child has gone thru, and will continue to go thru, even as I sit in the hospital with him tonight ( admitted due to three days of non stop vomiting and small bowel shut down) it is about time places like MAW start looking at kids suffer these horriable GI diaeses. We see them all the time up here on the GI floor.

Ok I am sorry that I totally went off on a vent on that too... In the end I am glad that they did sign it for him, just wish it did not come off the way it did before they said he needed a transplant....KWIM
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Old 01-09-2009, 11:32 PM   #138
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Here's the info that was reported about guests eating at the Gingerbread House

http://www.disboards.com/showpost.ph...&postcount=365
Thank you for that link. Wow that would be great if all they had to pay was $1 for a whole meal...not bad at all.
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Old 01-09-2009, 11:38 PM   #139
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I called MAW about 6 weeks before our trip to ask if my niece could stay at GKTW with us .They did stress that airfare , park tickets,& food in the parks would be at her expense.Lucky for her ,her Mom works for US Air so she was able to fly for free .I picked up snacks & water bottles to bring to the parks with us at the Walmart down the road from GKTW to save $$ .You can save quite a few bucks doing that .We did all counter service meals in the parks , mostly because my kids would never stop long enough for a sit down meal !
The only person that gets a GKTW button is the Wish child & you'll only get 1 GAC for the Disney parks ,so you can all go together with that .
Thanks for heads up on the Walmart, I was reading that on another thread. Again thanks for the information, I feel less stressed now.
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Old 01-10-2009, 01:21 PM   #140
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Quote:
Originally Posted by AmberGreenawalt View Post
One woman at Disney who was next to us at a parade was appalled that Sebastian got a wish when he isn't "terminal"

If MAW only had a certain number of wishes they could grant then we would not have sought one for Sebastian. But it wasn't like him having his wish was keeping another sicker child from having theirs. KWIM?

That is so terrible! Don't they realize we would give up all the the trip and all the "perks" of MAW in a heartbeat if our children didn't have to endure all that they do?

Quote:
Originally Posted by maroo View Post
I TOTALLY agree with you!!! And I can't believe someone said that to you guys to your face?!?!?

Yeah...You would not believe what someone wrote on the video I posted on You Tube. The one documenting Lauren's trip. I set it up so that no comments could be posted without my approval and it did not get approved...but one of them was about how someone with CP should not be given a wish. That they should be reserved for kids with cancer. And that we "should be ashamed of" ourselves for taking a trip when another child could have. It broke my heart! I wanted so bad to reply to the person...but it was a "fake" acct...they actually signed up as "Lisa." Which means they either knew us (I hope not!) or they know us from these boards. Probably from the boards...because they might think that her mom made the video. It broke my heart.

Precious Lauren puts up with some much junk all day...having someone give her a shower and get her dressed every single morning...the hours and hours she spends on homework because she is slower than her classmates...(WHY, OH WHY am I telling all of you this?!?!?) Anyway...you get it.

I get it...I know that there are children out there that are doing a lot worse than Lauren. Sweet Noah is fighting for his life every single day, for example. And we have a lot of kids on this thread that are in the same or similar boat.

But MAW has plenty of wishes...especially Disney wishes...

Do you know, they asked Lauren if she would want something different...like to go to Paris and shop...or to New York...or California...

And do you know what she said, "No, I don't want to take a wish from another child. Isn't a Disney wish easier for ya'll?" She also wanted to know if there was something that we all knew that she didn't...she evidently thought it was a "terminal only" trip, too.

Bless her...

Anyway...SORRY for the rant...But it did irritate me. Almost enough to write a letter to the producers of Grey's...they can add it to the stack of mail they get about silly stuff, I guess!



Yeah, Amber!! How is Savannah???
What a sweet girl- thinking of others. That literally makes me sick that somebody posted that. I sure hope Lauren didn't see it!
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Old 01-10-2009, 02:43 PM   #141
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Wow I was a little agresive last night, but I really am bothered by the state of most individuals and how they think they know how it should be.
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Old 01-10-2009, 05:04 PM   #142
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Quote:
Originally Posted by oklamomof4boys View Post
What a sweet girl- thinking of others. That literally makes me sick that somebody posted that. I sure hope Lauren didn't see it!
Thanks, Carol. She never saw it. Her Mom did...but Lauren wasn't there.


And I was pretty aggressive last night, too. but a new day is here!
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Old 01-10-2009, 05:19 PM   #143
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Thanks, Carol. She never saw it. Her Mom did...but Lauren wasn't there.


And I was pretty aggressive last night, too. but a new day is here!
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!
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Old 01-10-2009, 05:50 PM   #144
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Hey all.. we are back from Nick's send off party and wow.. let me tell you it was amazing. I will hopefully get a chance to download all the pics and update his PTR tomorrow. We are just so tired tonight to do it.

Oh.. and I watched my recorded Grey's this aft. and was disgusted.
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Old 01-10-2009, 06:44 PM   #145
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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.
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Old 01-10-2009, 07:20 PM   #146
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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?
How exciting! I can't believe that in 9 days we will be there! When we found out three months ago, it seemed like such a long wait, now things are so rushed I can't keep my head on straight! I am so sad we will miss you by just a couple of days, I hope that we get one of your gift bags, how cool would that be?
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Old 01-10-2009, 08:37 PM   #147
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Update on Savannah

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
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Old 01-10-2009, 08:42 PM   #148
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Thanks for posting about them! We're still praying.
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Old 01-10-2009, 08:46 PM   #149
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A quick question

Does GKTW have hair dryers in the villa's?

Mandy
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Old 01-10-2009, 08:50 PM   #150
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Thanks for posting about Savannah!
Although the news isnt Dire, it isnt that good either. It must be awful having to stay in the hospital AGAIN! Plus not finding out what Savannah's diagnosis is, I really feel for that poor family.
Continued prayers for Amber and her family

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