Taylor's Once in a lifetime wish 3/13 ~ update 3/12 More BIG GIVES & time to go pg 30

[that's nice]

Ok so we are 18 Days away & I am very excited but I am starting to stress out a little bit!!!!
I have not heard from MAW yet as to when Taylor's Wish Granters will be coming to the house with our package.... We also have not recieved anything from GKTW yet?????

You should be hearing something any day. I would say if you don't hear something when you are 14-13 days out give them a call.

I think we received our GKTW papers early.. but there wasn't anything too important in there.

Also what do they actually give you that day?

We got our expense check, flight info, rental car info... stuff like that.

Then final question (at least for now) ~ When did you receive your GKTW packet & what was in it?

You will get all the important stuff at orientation. I think we just got a map of GKTW and welcome letter (i think.)

Oh by the way I checked the Disney Park hours for the week we are there & they are much later now than they were a month ago when I checked.... Is that weird ????

It is going to be busy so the park hours got extended. Don't worry, you will have the GAC and button. This will help you A LOT!

I have checked SW for the times of the shows there and it is not up on the site yet does anyone know how soon they will post them?

I checked and checked for our trip and they were never posted. When you arrive they have paper that has the schedule of shows. They usually have multiple times a day.

 

[billwendy]

Daniel's MAW granters came about 3 weeks before his trip. They gave them a folder with a map to GKTW and it had info about the things to do there on it too. Didnt get airline info/expense check until about 2 weeks before. It was so late that DH and I had to drive because airfare was outrageous at that point!!!!

Things seem to be set up very nicely. You come off the plane and a greeter is there with a special sign for you. They help with your luggage and get you settled in your rental car with a map to GKTW. Check in at GKTW took us a bit of time, I dont think their villa was quite ready. But, as soon as you get there you are able to use all their "stuff" including eating!!lol....Since DH and I werent staying there, we couldnt eat there. We went out a grabbed a bite, then came back and we all went swimming. Then DH and his cousin went to the orientation. They were given all the tickets and a MAW button and an assistance pass for WDW - they did put the number of people in their party on Daniels pass, and they wouldnt include us in that number BUT only once did someone check to see that it was the right number of people. We were definately part of the "helping to care" during this trip and usually DH was pushing Daniel's wheelchair, and I was holding hands with his 2 brothers who also have developmental issues.

Dont worry Teresa!! It will all work out okay!!!

How was TV time today?

 

[my2girlsrock]

Too right.. no point following the crowd! It's better to have her own style

Sami definately has her own style.... & she ALWAYS follows it... lol

can't help with MAW stuff or SW times...but I know WDW hours have extended during our trip too....I think its because of the influx of people going with spring breaks during so many different weeks!

Sooooooo is that a good thing or bad thing... LOL I guess that means it will be crowded....

I can tell you..we haven't gotten ours yet either. We are suppose to have a going away party too, but haven't heard about that either. I did get a text from one of the granters about a week ago and she said she would call me last week, but she hasn't yet. Really the packet has nothing in there that you don't already know. Just gives you flight and rental info. Also when they will be picking you up and how...limo or shuttle.

I have a feeling the parks are going to be packed. I have been trying to change Kylees BBB to just a tad later appt. and they are completely booked up. I need to go check the times the park closes. Last I looked...a few months ago..DW closed at 11pm.

18days!!!!!

The times vary per day..... Which day are you going to MK? I hope that you hear soon. Doesn't it seem so unreal still? If not for the BIG GIVES we have been getting I would feel like this is all a dream

We were going to do the BBB but the girls decided they would rather not do it.... I really hope they don't think they can change their mind at the last minute.... LOL

 

[my2girlsrock]

Ok so I had planned on getting on here last night because we received BIG GIVES yesterday!!!! AGAIN!!!! we realize everyday we get one how very blessed we are to have been chosen for this wonderful thing. We are hoping to become a part of the BIG GIVE when we get back from our trip..... Obviously I didn't get on here last night Taylor had her pre chemo blood check yesterday afternoon so after working half a day I picked her & Sami up then drove almost an hour to the hospital, gave blood, saw the dr, Taylor's blood levels came back as low normal, but at least they are normal, so no shot to boost her ANC & WBC before chemo next week!!!! We drove home, got home around 5, then we had to go pick up the poster pictures that we had made up for the press conference that was taking place today at the hospital.
WAIT!!! Did I tell you all about that? If not I will now, if I did just skip the next paragraph....

Rare Disease Awareness Day is Monday Feb 28th & as you all know I will be standing outside the Today Show with about 100 other people to promote Histio Awareness, since Histio is a rare disease. So when Taylor's doctor heard I was doing this they asked me if I would be interested in doing a press conference with them before it to help promote it. We spoke to Taylor first because after all it is her story to tell & she said yes. We were excited & the date was set for Feb 24 at 10:30 in the morning. I was ok until yesterday then I was like what did I get us into!?!?!?!?!?! To say the least I was very nervous last night... ANYWAY back to yesterday & why I couldn't get on here....

So we go pick up the poster pictures, I grab the kids something to eat, go home, bathe them, laundry ~ look at the clock 9:00!!!!!!!!!!! WHERE DID THE NIGHT GO????? I call Johnny to see where he is & he is still at work, ( work is crazy for him this week ) Now I am trying to get the girls settled down, finish folding laundry & I still have to write up some notes for the press conference so I am not unprepared....

At about 10:00, I sit down to write up notes & Taylor asks what I am doing (I know they were up VERY late last night but NO school this week ) so I tell her & she says she wants to write her own notes too. so cute right?
She yells to me a few minutes later that she is done & says good night, I looked at what she wrote before I finally went to bed around 12:30 this morning & I was so proud of her... I will share with you at the end of this rambling post..... Oh by the way Johnny got home around 10:20 last night.... (in case any of you were wondering)

We received a few wonderful BIG GIVES yesterday that I can't wait to post the pics.... I still have to upload them.

We went to the press conference today & Taylor was wonderful, I am so very proud of her for what she is doing. We always ask her before we commit to any type of talking about Histio or her story because it is utimately up to her. She really wants to do it..... Sami was also at the press conference she absolutely did NOT want to talk to anyone TOTAL opposites....
Oh & by the way I made her wear high boots because I didn't want her not matching socks showing on television.....

Here is what Taylor wrote for today's press conference & she actually read it to the whole room full of people into the mic ...... LOVE HER

My mom asked me if I wanted to try to talk about histiocytosis & tell people my story & I said yes. I want to tell people about Histiocytosis because if I tell people I have it they don't even know what it is. Alot of times they say that I look fine & don't look sick but I don't always feel fine inside. I know what it feels like to have histiocytosis & alot of the time it hurts. I have to have chemotherapy & I get really tired, I get bad mouth sores from chemo & then if I am hungry I can't eat, I get headaches, my belly hurts, I get alot of muscle cramps & I even throw up sometimes. I had to go to the hospital alot of times because I got sick with a fever. But the worst part is I can't do things with my friends or play soccer during chemo week & sometimes even when I don't have chemo because I just don't feel good. Sometimes I am afraid to go to sleep because I am afraid I am going to die. Dr. V tells me that I am going to be ok & I really love her for taking care of me. Even when I feel really bad I always try to keep smiling, I know that everyone worries about me & when I smile they smile. I know that histio is rare so that means alot of people don't have it but it doesn't mean that kids like me with histio don't matter. I really want to teach everyone about histio & help Dr. V find a cure so that it goes away & never comes back.

When I read that last night after she went to sleep I was so proud of her, she is my inspiration to try to make a difference. I have some pics from the press conference that I will post later as well if people would like to see them....

Well be back later to post pics, just wanted to check in & let you know what has been going on in this crazy place called our house...... oh yeah only 17 DAYS LEFT that could also have something to do with why the girls are bouncing off the walls.....

 

[my2girlsrock]

You will get all the important stuff at orientation. I think we just got a map of GKTW and welcome letter (i think.)

How long did you say orientation is? I thought you or someone else said like 45 min? We are landing at 12:05 & I am trying to figure out when orientation will be for us because we have reservations at Chef Mickeys for 7:45 that night, we also were thinking of going to DTD before CM? To much you think?????

It is going to be busy so the park hours got extended. Don't worry, you will have the GAC and button. This will help you A LOT!

I hope so but either way we will enjoy every second.... [COLOR]


I checked and checked for our trip and they were never posted. When you arrive they have paper that has the schedule of shows. They usually have multiple times a day.

I am assuming they are basically the same everyday??????

Daniel's MAW granters came about 3 weeks before his trip. They gave them a folder with a map to GKTW and it had info about the things to do there on it too. Didnt get airline info/expense check until about 2 weeks before. It was so late that DH and I had to drive because airfare was outrageous at that point!!!!

Things seem to be set up very nicely. You come off the plane and a greeter is there with a special sign for you. They help with your luggage and get you settled in your rental car with a map to GKTW. Check in at GKTW took us a bit of time, I dont think their villa was quite ready. But, as soon as you get there you are able to use all their "stuff" including eating!!lol....Since DH and I werent staying there, we couldnt eat there. We went out a grabbed a bite, then came back and we all went swimming. Then DH and his cousin went to the orientation. They were given all the tickets and a MAW button and an assistance pass for WDW - they did put the number of people in their party on Daniels pass, and they wouldnt include us in that number BUT only once did someone check to see that it was the right number of people. We were definately part of the "helping to care" during this trip and usually DH was pushing Daniel's wheelchair, and I was holding hands with his 2 brothers who also have developmental issues.

Dont worry Teresa!! It will all work out okay!!!

How was TV time today?

Thanks for the info Wendy.... luckily we know our flight info we just don't actually have anything in our hands yet.... LOL

TV time was good...... Taylor did an amazing job.... I am so proud of her....

 

[WDWCP96]

You have an amazing little girl! She is so deserving of this trip!

 

[Emilyswish]

How old is she again? 9? That is amazing and made me cry. Maybe she will be a writer when she grows up!! She understands so much about something she should never have to. Big hugs to her!

 

[my2girlsrock]

You have an amazing little girl! She is so deserving of this trip!

Thank you so much ..... we feel that she deserves a week of not worrying at all.....

How old is she again? 9? That is amazing and made me cry. Maybe she will be a writer when she grows up!! She understands so much about something she should never have to. Big hugs to her!

She really wants to do what she can to spread the word..... I feel the same way about her not having to go through all of this. I feel that way whenever I read the stories about these wish kids. They ALL inspire me so much I get choked up thinking about all they have had to go through....

 

[tinytreasures]

WOW just WOW your daughter has a way with words

 

[mommy2mrb]

please tell Taylor she is such a brave girl!!! what a wonderful thing she did for herself and other's that are fighting along side her and give her a BIG from us!!

I know you had a major proud mommy moment

 

[PurpleEars]

Beautiful Minnie skirts & matching aprons for the girls (which they LOVE) these were made by PurpleEars, Flora

The awesome matching Minnie shirts were made by Darragh (Becky)

I am glad the package arrived. The girls just look so cute in them - I think Darragh did a great job with the matching tops! I hope your family will have a wonderful trip! It will be here before you know it!

Also thank you for sharing Taylor's speech. She is very brave to do this in front of a room full of people!

 

[my2girlsrock]

Ok so here is our BIG GIVE update!!!
I have to say every time a package comes the girls freak out!!! They run outside to the mailman....I bet he feels really special

First let me say that we have been trying to talk to the girls about deciding what they are going to buy while at Disney & telling them that even though we are getting a spending check from MAW that is going to be used towards food, character meals not only for souveniors...... When we got this amazingly generous BIG GIVE from the Laxton Family to say that the girls were excited is an understatement.... Thank you so very much for your generousity..... They LOVE gift cards & your amazed them!!!!

Our next BIG GIVE came from Allison & Malachi ~ These personalized activity books were a HUGE hit & right up the girls alley..... Taylor has asked if she can do a page leading up to our trip... she LOVES these kinds of things.... The pens were "ginormous" as Sami said...... She has not stopped writing with it!!!

PLEASE tell Malachi Thank you so much for the awesome drawing of Mickey.... It is hanging on our fridge. Taylor would like to know who his favorite Disney character is?

The next BIG GIVE was mostly for Johnny & I with some pixie dust for the girls from cogero.... We LOVED the shirts & the girls enjoyed the pixie dust!!!!

One more BIG GIVE in the next post....

 

[my2girlsrock]

This next BIG GIVE is extra special because I don't know if you all know this or not but part of Taylor's wish was to have an autograph book that she can have all of the characters sign so when she open the mail today she was beyond excited to see the amazing personalized autograph books that Kellyw8863 made for both of my girls. They are amazing & as Taylor said when she saw them "Mom these are even better than the ones that I wished for".... she was thinking of the blue disney ones they sell at Disney.....
Thank you soooooo much I truly appreciate it.... I only have the pics of the actual gives up on photobucket right now so I will post the others tomorrow. (The ones of Taylor opening it, Sami's face as she opened it.)

Thank you all so much again for your awesome gifts....... I try to express the gratitude threw these words but I don't know if it gets across.... so I will just say

As I promised I am going to post a few pics from the press conference from today ......

I hope you all enjoy all the pics..... I am going to post our itinerary tomo & ask for our opinions on some things so get ready for it......

 

[mommy2mrb]

more great big gives!!!

love the photos of Taylor!

will be watching the today shop on Monday!

 

[kellyw8863]

Here is what Taylor wrote for today's press conference & she actually read it to the whole room full of people into the mic ...... LOVE HER

My mom asked me if I wanted to try to talk about histiocytosis & tell people my story & I said yes. I want to tell people about Histiocytosis because if I tell people I have it they don't even know what it is. Alot of times they say that I look fine & don't look sick but I don't always feel fine inside. I know what it feels like to have histiocytosis & alot of the time it hurts. I have to have chemotherapy & I get really tired, I get bad mouth sores from chemo & then if I am hungry I can't eat, I get headaches, my belly hurts, I get alot of muscle cramps & I even throw up sometimes. I had to go to the hospital alot of times because I got sick with a fever. But the worst part is I can't do things with my friends or play soccer during chemo week & sometimes even when I don't have chemo because I just don't feel good. Sometimes I am afraid to go to sleep because I am afraid I am going to die. Dr. V tells me that I am going to be ok & I really love her for taking care of me. Even when I feel really bad I always try to keep smiling, I know that everyone worries about me & when I smile they smile. I know that histio is rare so that means alot of people don't have it but it doesn't mean that kids like me with histio don't matter. I really want to teach everyone about histio & help Dr. V find a cure so that it goes away & never comes back.

That is fantastic. She truly does sound like a special little girl. At what age did you start talking to her about her having histio? Ali has started asking questions, but I'm not sure I'm ready to go there yet. At any rate, she sounds incredibly poised!

This next BIG GIVE is extra special because I don't know if you all know this or not but part of Taylor's wish was to have an autograph book that she can have all of the characters sign so when she open the mail today she was beyond excited to see the amazing personalized autograph books that Kellyw8863 made for both of my girls. They are amazing & as Taylor said when she saw them "Mom these are even better than the ones that I wished for".... she was thinking of the blue disney ones they sell at Disney.....
Thank you soooooo much I truly appreciate it.... I only have the pics of the actual gives up on photobucket right now so I will post the others tomorrow. (The ones of Taylor opening it, Sami's face as she opened it.)

Thank you all so much again for your awesome gifts....... I try to express the gratitude threw these words but I don't know if it gets across.... so I will just say

As I promised I am going to post a few pics from the press conference from today ......

I hope you all enjoy all the pics..... I am going to post our itinerary tomo & ask for our opinions on some things so get ready for it......

Awww...I'm so glad that the girls enjoyed them! I made the girls' their autograph books when we went on Ali's trip back in April, and they were a huge hit in the parks. Many of the characters commented on them. Jasmine and Aladdin actually had a really funny exchange over the fact that she couldn't find her page even though all the pages are in alphabetical order. I hope they have a ball collecting their autographs!

Great pics from the press conference! She's famous!

 

[brookerene]

That is all sooo cool! The Big Gives and the press conference! Thanks for sharing!

 

[billwendy]

Ahh, love all the pics!!!! Looked like Taylor rocked the press conference with ease!!!

Are you ready to go yet??? lol!!!!!

 

[tebi73]

Ok so here is our BIG GIVE update!!!
PLEASE tell Malachi Thank you so much for the awesome drawing of Mickey.... It is hanging on our fridge. Taylor would like to know who his favorite Disney character is?

Glad the girls liked them! Malachi was so intent on making that Mickey perfect for Taylor! By the way - his favorite is Donald or Chip & Dale.

 

[blessedmom4]

The press conference was awesome. I think illness makes our children grow up very fast and makes them wise beyond their years. Taylor looked like a pro!

 

[Emilyswish]

Taylor has such an awesome smile!!! Way to go on the press conference and amazing gives!! Yay!!!