Madison's Special Wish Foundation Trip/GKTW

Awww super cute! :cutie:

I love our shirts. They are sooo cute and comfy also. I can't wait to wait to weat them. The Big Give ladies are so talented and soooo giving, They are a great group of people. Thank You from the bottom of my heart for what you are doing for my Madison.
 
I love our shirts. They are sooo cute and comfy also. I can't wait to wait to weat them. The Big Give ladies are so talented and soooo giving, They are a great group of people. Thank You from the bottom of my heart for what you are doing for my Madison.

You all are adorable!!!! Its so fun to wear matching shirts at Disney!!! I totally know what you mean about the Big Give - when our packages started arriving for Daniel's Big Give - I really was overwhelmed and just cried!! People all over the country - that you've never actually met - sending you gifts! Its just amazing!!! Looking forward to you guys joining us when you get home!! I've heard that Madison is already plannign what she is going to send to other families!!!!:goodvibes
 

I like the pictures too...seeing that beautiful smile makes my heart melt and gives me strength...puts everything in prospective....I know on a previous post there was mention about the feeling of people wondering if Madison deserves her wish trip...I say ABSOLUTELY she does, and if they dont agree, well, you have lived your life this long without them, and you will continue to live it without them...surround yourself with positive energy...I stand behind you 100%, feel that Madison is a precious gift that has touched many lives, and this wish trip is a time for her to get some of the joy back that she has given, and I CANNOT wait to hear (and see pics) of Madisons wish trip! Ok, my soapbox is done, bring on more pics:rolleyes1
 
You all are adorable!!!! Its so fun to wear matching shirts at Disney!!! I totally know what you mean about the Big Give - when our packages started arriving for Daniel's Big Give - I really was overwhelmed and just cried!! People all over the country - that you've never actually met - sending you gifts! Its just amazing!!! Looking forward to you guys joining us when you get home!! I've heard that Madison is already plannign what she is going to send to other families!!!!:goodvibes

We love the shirts. We are for sure joining the the group when we return. Madison loves to give to other people. We are excited to give back. And thank you for the pool pictures. I have not seen any and was wondering what it was like. I told Tammy that we needed to do the surfing picture. I hope it is warm enough for us to swim.
 
LOL, I love that Madison always poses with her stuff! She is too cute. :)

Madison loves to have her picture taken and she love to pose for them. She gets that from all those teeny bopper shows she watches. You know Camp Rock, Hanna Montana, I Carly and he like.lol:rotfl:
 
We love the shirts. We are for sure joining the the group when we return. Madison loves to give to other people. We are excited to give back. And thank you for the pool pictures. I have not seen any and was wondering what it was like. I told Tammy that we needed to do the surfing picture. I hope it is warm enough for us to swim.

Thats just one of the pools!!! There is another one that is a circle - and it was VERY warm when we were there -maybe its heated???? There is just so much to do there!!! Lets see...

The Merry go round
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THe Ice Cream shop - look at the cool bowls you can sit it!!! I had a sprite and a yummy hot fudge sundae!!
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Here is the arcade, where you get the choo choo etc
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Ahhh - good memories!!!
 
I just want to take a minute and say I am sorry that mom has been replying and not myself to all of your wonderful comments. I am having a really hard time dealing with Madison's illness right now. Thanks mom for taking care of this for me. I love you.:love:
Hoping to feel a little better soon, so that this will be fun for me again.
 
I just want to take a minute and say I am sorry that mom has been replying and not myself to all of your wonderful comments. I am having a really hard time dealing with Madison's illness right now. Thanks mom for taking care of this for me. I love you.:love:
Hoping to feel a little better soon, so that this will be fun for me again.

:hug::hug::hug::hug::hug::hug:
 
I just want to take a minute and say I am sorry that mom has been replying and not myself to all of your wonderful comments. I am having a really hard time dealing with Madison's illness right now. Thanks mom for taking care of this for me. I love you.:love:
Hoping to feel a little better soon, so that this will be fun for me again.

Pixie Dust headed your way darlin':wizard:
 
Thanks so much for sharing Madison's story. I cried as I read it, and have already started praying for you. I'm looking forward to hearing all about her special trip!:lovestruc
 
MORE BIG GIVE ARRIVED TODAY AND SOME SPECIAL MAIL AS WELL
The postman told mom we are really making him work with all these boxes. She just replied that it will continue for a couple more weeks. He doesn't seem to be to excited about all the mail, but we are. I will post the pictures later this evening. I do want to thank Jennifer (cjbear) for the cool homemade backpack. Madison has a slumber party tomorrow and is going to use it to take her night clothes. Very teenager looking, thanks. I also want to thank Jeff for our gift and Madison's gift. She loved all her stuff and grandma was so excited about her picture. My Eeyore will sit on my desk were I do my work, thanks I love him. :hug::hug::hug:to you all.
 
Woo Hoo!! More Big Gives! Can't wait to see the pictures! I sure hope Madison has fun at her slumber party!!!:goodvibes
 
So I got the call this morning for our (me and Madison) flight times to NIH, FINALLY. We leave Oct 18th at 11:30am and come home Oct 21st at 5:35pm. Which is a day longer than we had first been told we would be there. Grandma is not going to be happy at all because she will be here without us. She has to work and can't go. So the lady I talked to this morning wasn't very helpful about much more than giving us our flight times. I asked her what we do once we get there as far as getting from airport to NIH and she said she thinks there is a shuttle. I am going to wait under this afternoon and call back and see if I can get someone else on the phone who may be able to help me a little more.
So once we get there we will be admitted to the hospital and they are going to do a lot of testing - MRI's, CT Scans, x-rays and bone densitys. She will also see the Job's Syndrome specialist and the dentist. All of the doctors that she will see are all specialist in Job's Syndrome, so we are praying we get some more help. Will keep everyone posted on how things go.

I have been following along for a while. I just wanted to let you know that your family is in my prayers. I hope and pray that they are able NIH help, at least a little, to help Madison feel better! Which campus are you going to be at? Are you coming to the one in Bethesda, MD?
 
So here are the pictures from todays mail.

Madison opening first package.
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This first package is from cjbear. Thanks. Notice Looey (her new bear) sitting beside her. :)
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The homemade backpack that is from cjbear.
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Of course she is posing with it on.
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Madison getting into the second package. Thanks Jeff.
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Madison holding up mommys Eeyore.
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Thanks for the goodies. Yummo
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Letter from second package.
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Madison with all the stuff from second package. The picture was for grandma. She loves it, thanks Jeff.
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Picture of all the stuff that was in the second package.
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I have been following along for a while. I just wanted to let you know that your family is in my prayers. I hope and pray that they are able NIH help, at least a little, to help Madison feel better! Which campus are you going to be at? Are you coming to the one in Bethesda, MD?


Yes we will be at the Bethesda, MD one. Thanks for following along and reading all about my baby girl. :hug:
 




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