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Old 11-05-2010, 05:25 PM   #1
my2girlsrock
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Taylor's Once in a lifetime wish 3/13 ~ update 3/12 More BIG GIVES & time to go pg 30

Hi everyone,

I am very new to this..... Let me start by introducing my family or the "cast" of this trip...
My name is Teresa I am 33, I married my husband John, 35 in 2001. We have 2 beautiful daughters, Taylor 8 (turns 9 Dec) & Samantha who just turned 7 in Sept. Taylor is our wish child, her oncologist/social worker at the oncologist's office, thought MAW would be a good thing for Taylor. We are still in the very early stages but I have been reading up on the DISboards since we got the call from MAW a couple weeks ago that Taylor was approved. All of the stories amaze me!!! It is so nice to see so many kids that have gone through so much have the trip of a lifetime!!! I am going to post some background medical info about Taylor & why she is MAW eligible.

Taylor is our beautiful 8 year old daughter & she has Neuro Degenerative Langerhans Cell Histiocytosis, (ND LCH) with Central Nervous System, (CNS) involvement and Diabetes Insipidus. At the age of three and a half Taylor was diagnosed with Diabetes Insipidus, (DI) is an uncommon condition that occurs when the kidneys are unable to conserve water as they perform their function of filtering blood. Once diagnosed with Diabetes Insipidus she was placed on DDAVP daily. The doctor told us there could be a number of different causes for her having DI including head trauma, a growth on the pituitary gland or genetic. Beginning with the year she was diagnosed with Diabetes Insipidus, she underwent an MRI of the brain yearly to watch for any changes with the pituitary gland. Up until March of 2009 all her MRI’s came back normal. In March of 2009 the MRI showed subtle thickening of the pituitary stalk & an abnormal lesion on the brain. The word Histiocytosis was mentioned as the reason for the changes on the MRI. Diabetes Insipidus can be diagnosed years prior to Histiocytosis but is in fact caused by it. Since the time Taylor was diagnosed she has had approximately 9 MRI’s, 4 X-Rays, 1 Full Body X-ray, 3 Nuclear Bone Scans, a TON of doctor appointments and blood work to many times to count. In March of 2010 she began having some strange neurological symptoms, hand weakness, she could not grip things well – pencils, baseball – as well as dizziness. The neurologist ordered an EEG & while we were waiting to have the test done, she had a “petite seizure”. After the EEG and a video EEG, she was placed on Trileptal, an anti-seizure medication. The abnormal lesion on the brain is Histiocytosis and is now beginning to affect her central nervous system. Taylor has had 2 IVIG infusion treatments which gave her many side effects & they did not seem to help her. Her doctors now feel chemotherapy is our only option.
Taylor had her port placed in the beginning of August, she started chemotherapy mid August. She has chemo every 4 weeks for 5 consecutive days Mon - Fri. She will have to undergo chemo for a course of 12 months or 12 cycles, so her last chemo session won't be until August of 2011. During the week of chemo & the week after she is really a mess, emotionally & physically.

Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening.

Histiocytosis is not a cancer, in many ways histiocytosis is similar to cancer and is treated by oncologists with chemotherapy and/or steroids. It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is considered an "orphan disease," meaning it strikes too few people to generate government-supported research.
Please learn about this disease & spread the word. More people need to be aware of histiocytosis & how dangerous it truly is. For the past 2 years we have had a Bowling For Histio Fundraiser in honor of Taylor & all the money raised goes to the Hisitocytosis Association of America.

Please keep Taylor in your prayers. Taylor is an energetic, active & fun-loving 8 year old. She loves to play sports especially soccer. She loves to play with her little sister Samantha & they enjoys doing "girly things", like their hair, wearing makeup & they are both really getting into clothes now. She LOVES Justin Bieber & music in general. Taylor & Samantha still really LOVE Disney. She doesn't like to be treated differently or "not normal". She gets frustrated when people try to make a big deal out of what is going on with her, she always tells people "You know there are alot of kids much sicker than me." That is the kind of person she is. Taylor is the strongest 8 yr. old we know, she makes us proud everyday with the strength she has & how positive she is every single day. She rarely complains & never gives up. She is an inspiration to us & because of this we have learned to take one day at a time, cherish EVERY moment & never lose faith.

Our daughter Samantha is 7 and she is having a really hard time with all of this. She is feeling VERY left out. We try to include her as much as possible but she gets scared about what her sister is going through. My husband & myself get worried, scared & upset & we are old enough to comprehend what is going on. I can't imagine being 7 & seeing your sister/best friend go through all of this. Sami tries to be strong & doesn't always express herself in the right way but we are working on getting her to express herself better. It is very hard to balance the attention between the 2 of them to make sure they both get what they need....

I work as a medical biller at a surgeons office & thank God they are understanding because I have missed ALOT of work. I miss at least 1 full week a month, then all the doctor's appointments, testing & everyday sickness that comes up. Vacation time goes towards sitting in a Doctor's office or hospital now My husband is a warehouse manager & he works LONG hours. He won't admit it to them but our girls have him wrapped around their fingers...

We heard from Make A Wish about 2 weeks ago saying that Taylor was approved for a wish & when we first told her & asked her we had NO idea what she would say.... we thought she would ask to meet someone like Justin Bieber or something like that. Imagine our suprise when she says "I really wish we could take a family vacation to Disney with GaGa & Pama (my mom & dad)" We were shocked, happy but suprised this is what she asked for. Then she went on to say she wants to get her own autograph book & hve ALL the characters sign it, have a meal with Mickey & Donald & pet the dolphins.... LOL MAW office told me about the DISboards so I have been looking since , I have found ALOT of info. We meet with Taylor's wish coordinator's next Friday so I thought I would post a few ?'s on here before we meet with them. We are so excited to possibly be going on a trip that we don't have to stress over money & how we are going to pay for it, to be able to go on a vacation & let our girls enjoy themselves will be priceless.... It will be a once in a lifetime thing to be able to have us not think about doctor's, chemo, upcoming appointments for a few days....

I do have a few questions if anyone could answer them or give me advice I would appreciate it....
~Taylor's wish is to go with my Mom & Dad, will they be included in the package or would they go on their own vacation but meet up with us?
~We would like to go sometime in Feb or March.... anyone know the weather at that time, also the crowd levels?
~MAW told us that usually the people that go through MAW stay at GKTW, but you can stay at a Disney Hotel.... What is the opinion on this? We have looked into GKTW & it looks amazing, but there are no Extra Magic Hours staying there, do you need the Extra Hours at the Disney Parks?
~I know that this is Taylor's Wish Trip but I would like to try to make sure that Samantha feels included as much as possible with this, how do I ask the MAW people this? Is that something I should not ask?
~Is there anything that we should ask the coordinator's the night we meet them?

I know this is probably alot for a first post but I wanted to try to get it all in... I was going to post a few pics but I have not posted enough post yet

Taylor has a Carepage site if anyone would like to read more about her.... the link is ~ carepages.com/carepages/TaylorR

Thank you all in advance for any advice you can give me....

One more thing I know I probably sound a little stupid but can anyone clue me in as to what all the abbreviations mean???? DD, DH, MVMCP, GAC etc LOL
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My PTR : http://www.disboards.com/showthread.php?t=2590945
Taylor's Carepage link ~ http://www.carepages.com/carepages/TaylorR

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Old 11-06-2010, 10:34 AM   #2
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Wow... Welcome to the Dis!
DD=Dear Daughter
DH=Dear Husband
MVMCP= Mickey's Very Merry Christmas Party (only in Dec)

Ohhh... and there will be HUNDREDS of them for each of the different resorts (that's what they call their hotels) and then the Parks... It can be a little crazy... Here's a link: http://www.disboards.com/showthread.php?t=1660743

There will be SOOO much for you to do with your girls... Look in to Tea at the Grand floridian, the Bibbity Bobbity Boutique, and of course all the different character meals. Good luck! I know NOTHING about MAW, but I'm so happy for you to go!
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Old 11-08-2010, 11:56 AM   #3
my2girlsrock
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Quote:
Originally Posted by francis6306 View Post
Wow... Welcome to the Dis!
DD=Dear Daughter
DH=Dear Husband
MVMCP= Mickey's Very Merry Christmas Party (only in Dec)

Ohhh... and there will be HUNDREDS of them for each of the different resorts (that's what they call their hotels) and then the Parks... It can be a little crazy... Here's a link: http://www.disboards.com/showthread.php?t=1660743

There will be SOOO much for you to do with your girls... Look in to Tea at the Grand floridian, the Bibbity Bobbity Boutique, and of course all the different character meals. Good luck! I know NOTHING about MAW, but I'm so happy for you to go!

Thank you so much for responding ..... I appreciate the help you offered & the info on the abbreviations... . I am going to take your advice & look into the character meals & everything else. Thanks again
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Old 11-08-2010, 12:58 PM   #4
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HI!

You will have sooo much fun on this trip!! I would def stay at GKTW over the disney resorts! You can always stay at the disney resorts- to stay at GKTW is a once in a lifetime kind of event!!! They have sooo much cool stuff there too. And I think, with your GAC (guest assistance card) you really won't need the extra magic hours anyway. It will get you to the front of the line and other types of special treatments that only wish kids get.

Also, I wouldn't worry too much about your other daughter- GKTW knows how to make all the kids feel special, not just the wish kid. I haven't actually been myself, but I read a lot of the wish trip reports and stuff.... But I think they do a pretty good job of making all the kids happy. You could always have her a special event of the bippity boppity boutique or pirate league though if you wanted her to feel extra special. Both girls would love that as well.

Anyway, enough of my babbling! Can't wait to read more about your planning and have a good meeting with MAW!
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Old 11-08-2010, 02:06 PM   #5
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YAY!!! Congrads on your MAW trip!!! you guys will have so much FUN!!!

Im not sure if the grandparents will be included or not. I do believe that up to 7 people can stay in a villa at GKTW though. We went last April, and although our nephew Daniel's wish was to go to WDW with his family and us, we were not included in the wish and paid our own expenses. Because their family had 7 in it, DH and I stayed at the POP Century and just met up with them when ever they got going. I really dont think you need magic hours. When you go through MAW, you get a special pass that allows you to cut lines! Every line we went up to, Daniel would flash his pass, and they would let us in the fast pass line automatically!!!! So really, no waiting in lines at any park!!

GKTW is really cool. The pool is AMAZING and has a water sprinkler park thing right there!! The food was good too (we got to eat 1 meal there) and all you can eat ice cream (AWESOME)!! There are tons of parties, mini golf, a little arcade, Castle of Miracles, cool playground...on and on!!!! We loved it there. Daniel and his siblings were treated like kings and queens - all of them!!! It was really an awesome trip. Daniel had a neuroblastoma, and had just finished his Chemo in March -we too the trip in April. I wish they had chosen to wait longer as his endurance was just awful even though he had been having therapy at the hospital plus we were using a wheelchair - he ended up being sick/exhausted the last 2 days of the trip and totally missed them.

Here are a few pics of GKTW!!





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Old 11-08-2010, 04:01 PM   #6
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Teresa-
Thank you for sharing your DD (darling daughters) story. I know us parents would switch places with our kids if we were able to. I'm sure your family will have the most magical experience in WDW. (Walt Disney World). I hope your parents are allowed to go but from what I have heard and read, MAW would not pay for them to travel with you. Since there is only 4 or you, they might allow them to stay at GKTW (you already know this one! ) with you. They could always stay at a Disney Value resort or just stay near you offsite. They would be allowed to come into GKTW and spend the trip with the kids (except the sleeping under the same roof part)

Quote:
~We would like to go sometime in Feb or March.... anyone know the weather at that time, also the crowd levels?
February weather is usually in the upper 60s to mid 70s. Sometimes Florida gets a cold front where the temps can be in the 50s but usually bounce back after a few days unless it was like this past winter- cold for longer stretches. Crowds in Feb are generally low but watch out for school vacations.
As the days go on in March, avg. daytime temps go from the low 70's to close to 80. Once again there are temp swings but the temps bounce back quickly.

Man, I sound like a meteorologist. LOL
Quote:
~MAW told us that usually the people that go through MAW stay at GKTW, but you can stay at a Disney Hotel.... What is the opinion on this? We have looked into GKTW & it looks amazing, but there are no Extra Magic Hours staying there, do you need the Extra Hours at the Disney Parks?
I don't think you need EMH's because you will have front of the line access and you will be able to accomplish a lot in a short amount of time. You saw some of the pics that billwendy posted... GKTW is amazing!

Quote:
~I know that this is Taylor's Wish Trip but I would like to try to make sure that Samantha feels included as much as possible with this, how do I ask the MAW people this? Is that something I should not ask?
This is totally understandable and I think MAW will be more than accommodating making this happen!

I'm thinking BBB (bibbity bobbity boutique) for the girls if they wanted to. I'm not sure if they will think they are 'too old' though. Or a dinner in Cinderella's castle would be nice to do as a family.




Wendy- Thanks for posting those pics of GKTW!

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Old 11-08-2010, 04:26 PM   #7
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Quote:
Originally Posted by billwendy View Post
YAY!!! Congrads on your MAW trip!!! you guys will have so much FUN!!!

Im not sure if the grandparents will be included or not. I do believe that up to 7 people can stay in a villa at GKTW though. We went last April, and although our nephew Daniel's wish was to go to WDW with his family and us, we were not included in the wish and paid our own expenses. Because their family had 7 in it, DH and I stayed at the POP Century and just met up with them when ever they got going. I really dont think you need magic hours. When you go through MAW, you get a special pass that allows you to cut lines! Every line we went up to, Daniel would flash his pass, and they would let us in the fast pass line automatically!!!! So really, no waiting in lines at any park!!

GKTW is really cool. The pool is AMAZING and has a water sprinkler park thing right there!! The food was good too (we got to eat 1 meal there) and all you can eat ice cream (AWESOME)!! There are tons of parties, mini golf, a little arcade, Castle of Miracles, cool playground...on and on!!!! We loved it there. Daniel and his siblings were treated like kings and queens - all of them!!! It was really an awesome trip. Daniel had a neuroblastoma, and had just finished his Chemo in March -we too the trip in April. I wish they had chosen to wait longer as his endurance was just awful even though he had been having therapy at the hospital plus we were using a wheelchair - he ended up being sick/exhausted the last 2 days of the trip and totally missed them.

Here are a few pics of GKTW!!
WOW!!! Thank you so much for all of the info.... The pics were awesome , it looks amazing, we will definately be looking to stay at GKTW now. We thought that they gave us a "magic button" but we weren't sure how it worked. I hope that Daniel is feeling well now.... Thanks for reading our PTR......
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Mom to DD Taylor (8) Wish Kid, DD Samantha (7) Wife to DH John
Our puppy dog Molly
My PTR : http://www.disboards.com/showthread.php?t=2590945
Taylor's Carepage link ~ http://www.carepages.com/carepages/TaylorR
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Old 11-08-2010, 04:33 PM   #8
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Tim ~ Thank you for all the helpful info.... I actually just looked up the weather LOL It helps to get any info that I can though....

I can't believe that the "magic button" really works..... that is awesome...

I was thinking of the BBB, Taylor wants to eat with Mickey & Donald somewhere, I am still in the process of researching that... Do you know of anywhere that we can do that....

Thanks again for all the info!!!!!
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Mom to DD Taylor (8) Wish Kid, DD Samantha (7) Wife to DH John
Our puppy dog Molly
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Old 11-08-2010, 05:19 PM   #9
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Quote:
Originally Posted by my2girlsrock View Post
Tim ~ Thank you for all the helpful info.... I actually just looked up the weather LOL It helps to get any info that I can though....

I can't believe that the "magic button" really works..... that is awesome...

I was thinking of the BBB, Taylor wants to eat with Mickey & Donald somewhere, I am still in the process of researching that... Do you know of anywhere that we can do that....

Thanks again for all the info!!!!!
Hmmm - Does Chef Mickey's have both Donald and Mickey???? You should definately ask your Wish coordinator when you have your meeting - maybe they will add that in for you guys! Is there a place in the animal kingdom that you can eat with both of them?

At Sea World, they have a place where you can pet dolphins - I think each wish child gets a free plate of fish to feed them!! We had a great time at sea world too - and they let us cut the lines there too!!! And YES the magic button works MAGIC!!! Cast Members really seemed to want to hear Daniel's story - he got extra magic like a free pin here and there, free desserts here and there, he got sung to at the Columbia Harbor House....just a lot of fun things, especially at Disney!

Oh - one more thing - GKTW would only allow us 1 meal and 1 ice cream at GKTW - and they were nice but very firm about that. We could NOT purchase any additional meals to eat there with the rest of our family (just in case your parents arent staying with you). There were some "okay" hotels near by, but we enjoyed staying at the POP. It was a pretty direct drive off disney property to GKTW.
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Old 11-08-2010, 06:25 PM   #10
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Like Wendy said- Chef Mickey's has Donald & Mickey. They do breakfast, lunch, and dinner there.

In AK, Tusker House has Donald & Mickey for breakfast. This supposedly is a great spot for breakfast.

I know Mickey is at Mickey's Backyard BBQ @ Fort Wilderness Resort & Campground but I am not positive if Donald is there as well.

So that is basically the list to see that Mickey & Donald together at a meal. It is not long.


If you go to wunderground.com you can search past days, weeks, months for averages.
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Old 11-08-2010, 06:35 PM   #11
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I think the 3 places for Mickey and pals is Chef Mickey's (all day), Donald's Safari Breakfast @ Tusker House in the Animal Kingdom (only breakfast) and Cape May Cafe at the Beach Club, I *think* those are all right.... Hold please....







http://allears.net/din/cbchar.htm

Here's the meals with Mickey and different pals:

The Garden Grill - Chip and Dale's Harvest Feast - Located in the Land Pavilion in the Future World section of Epcot this restaurant features dinner with Mickey, Chip and Dale, and Pluto, all attired "farmer-style". Kids' menu includes chicken tenders, mac and cheese. Reservations are recommended. Lunch ended October 6, 2008.

Tusker House - The Animal Kingdom features a character breakfast, called Donald's Safari Breakfast located at the Tusker House in Africa. Characters include Donald, Daisy, Goofy, Mickey. All you can eat buffet from 8:00am - 10:30am. (Same day reservations may be available)

Cape May Cafe - Beach Club Buffet breakfast is served here every morning. Goofy, Minnie, and Donald are on hand and the meal is served buffet-style. Offerings include eggs, pancakes, meats, breads, fresh fruit and more.

Chef Mickey's - Contemporary Resort - Relocated (from Downtown Disney) 1996 to the Contemporary, Chef Mickey's serves breakfast and dinner with Chef Mickey, Chip, Dale and Chef Goofy. The breakfast buffet offers the usual items - eggs, breads, meats, fresh fruit, etc. At dinner there is a salad bar, peel and eat shrimp, soups, hot entrees, breads, carved meats, vegetables, desserts and an ice cream bar with a great variety of toppings. Breakfast Menu ; Dinner Menu. Advance Reservations strongly recommended.

Polynesian -- 'Ohana Character Breakfast - every morning. Characters include Lilo and Stitch, Pluto and Mickey. The meal is served family-style and features eggs, waffles, meats, breads, fruit and more. Advance Reservations are strongly recommended.
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Old 11-08-2010, 07:33 PM   #12
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Ok I am getting even more excited with all of the awesome info that you all have given us!!!!!

I am going to definately mention it to the MAW coordinators on Friday about the character meal. Thank you all!!!!!

Can anyone tell me how to post pictures?
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Old 11-08-2010, 11:46 PM   #13
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Hi and welcome to the disboards. Thank you for sharing Taylor's story. She is one tuff little girl. Can't wait to hear more about your trip.
We are going on my daughters MAW trip in March. It's suppose to be a very busy time, but with the GAC(front of line pass) it should be fine. I heard it was nice weather in March too. Both my kids can't do the heat or cold. Here's some answers to your questions...This is our second wish trip to Disney World....

~Taylor's wish is to go with my Mom & Dad, will they be included in the package or would they go on their own vacation but meet up with us?I have heard of MAW paying for the grandparents, but it's up too your chapter. If they don't..they can still stay with you at GKTW. They will then be able to eat with you for free.
~We would like to go sometime in Feb or March.... anyone know the weather at that time, also the crowd levels?I answered this one already.
~MAW told us that usually the people that go through MAW stay at GKTW, but you can stay at a Disney Hotel.... What is the opinion on this? We have looked into GKTW & it looks amazing, but there are no Extra Magic Hours staying there, do you need the Extra Hours at the Disney Parks? Like others posted...you can always stay at a Disney resort, but can never stay at GKTW again. This place is amazing. Surprises everyday and all the ice cream you can eat..plus activities everynight. With the front of line passes...you should get everything in plus some. We actually was allowed to stay EMH the last time at Animal Kingdom. We knew the park was suppose to close at 5, but nobody left. We thought it was strange, but just thought they stayed open longer. We didn't know anything about EMH then. We left at 6:30 and nobody said a thing to us. When we go in March..we are hoping we can stay the EMH for Disney Hollywood Studios, but if not..oh well.
~I know that this is Taylor's Wish Trip but I would like to try to make sure that Samantha feels included as much as possible with this, how do I ask the MAW people this? Is that something I should not ask?GKTW makes sure all the kids are treated just as special. They know the siblings suffer too. We are having major jealousy here too. No one will feel left out on the trip.
~Is there anything that we should ask the coordinator's the night we meet them?
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Old 11-08-2010, 11:56 PM   #14
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Oh.. just wanted to say that the Villa holds 7 people. There's one bedroom for mom and dad. The second room your parents can sleep in. They have 2 twin size beds in that room and then the sofa in living room turns into a bed. They even have a roll away bed in closet. The second bedroom has a huge bathroom too.
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Old 11-09-2010, 11:05 AM   #15
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Just found your PTR and I am so happy that Taylor get's to have her dream come true. MAW is just the BEST! My daughter is our wish child and we are going to be there Feb 1-7th. I am hoping the holidays will fly by like they always seem to and our trip will be here before we know it.

I can't really help answer any of questions from your first post but I did notice you mentioned maybe being there in Feb or March...that was the time frame we looked into also. We ended up choosing the beginning of Feb as I wanted to avoid the crowds around President's Day later in the month (I know we will have a GAC from reading here but just walking around the parks with two little ones when it is crowded seemed like it would be a bit much for us and getting ADRs where I hoped we could eat seemed a bit challenging when I looked into it) and all of a sudden March was busy for us. So far I have had it really easy making some ADRs and MAW was easily able to make us plans to eat at the castle one of the days we will be there. While I know it probably won't be warm I hope we see a little bit of sun but if not we will bundle up and enjoy our trip! I hope you find the perfect week for your family.

I hope you have a great meeting with your wish granters and will look forward to following your trip planning progress. I am very excited for your family!
__________________
Erika (Mama of 2 Great Kids) Chris (Fantastic Husband and Papa of 2 Great Kids)
Fuller (Great Big Brother - Age 5) Chelsea (Awesome Little Sis, Leukemia Survivor and Wish Kid - Age 3)
PTR--Bibbiti Bobbiti - Our Boo gets a MAW Trip to meet the Princesses Feb 1-7
Bibbiti Bobbiti Make A Wish Helps our Boo Have Her Princess Wishes Come True!!!
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