Hayley's Make A Wish Trip MAW/GKTW (Nov/Dec 2010)

[rcq925]

So I am starting the official pre-trip report.

I have been lurking here for months reading all the PTR's and Trip Reports and loving all of them.

Here is the cast:

Me- Becky, age 35, I am an adult probation officer and love my job.

Hubby- Shaun, age 36, works for a Toyota/Lexus dealership

Nathan, age 9, a wonderful young man I am proud to call my son:love:

Hayley, age 6, Wish Kid, who can't wait to go to Disney World :yay:

Here we are (Our family picture from Christmas 2009):
http://i958.photobucket.com/albums/ae62/rcq925/Family2009.jpg

Here's Hayley and Nathan at Easter:
http://i958.photobucket.com/albums/ae62/rcq925/IMG_4464.jpg

Hayley during her hospital stay last week:
http://i958.photobucket.com/albums/ae62/rcq925/IMG_3938.jpg

We just met with our wish grantors tonight for the first time. They brought a pizza for us to eat and presents for the kids. Then we got right down to the paperwork. They has already asked me what Hayley's wish was, so they pretty much had Disney down (really did not need a 2nd option as she said they could do Disney, no problem), but we listed Hawaii as a 2nd option. Hayley wants to sleep in Cinerdella's Castle, while that may not be possible (they said they would check) they mentioned tea with the princesses. We ate at CRT 2 years ago on a family trip, so really don't need to do that again. Tea with the princesses sounded nice. Anyone else done that?

They also asked if there was anything else special that she wanted to do at Sea World or Universal. She said pet the dolphins and meet Spongebob (both of which seem easy to make happen from reading all the trip reports here!) They asked us for three separate dates. We chose dates in November and December. We want to go when all the Christmas decorations will be up everywhere and it will be cooler for Hayley. We are so excited!!:dance3:

I wish we could leave tomorrow :banana:

So that's the start, more on why Hayley gets a wish in the next post.

[rcq925]

Hayley was born much smaller than her brother. She only weighed 6 pounds, 12 ounces and brother Nathan was 8 pounds 15 ounces (and he was 3 weeks early!) That was my first clue something was not quite right. Hayley was always hungry, spitting up all the time and not gaining weight. We though it was reflux and were referred to a pediatric gastro doctor, who switched her formula, but before that had a chance to even work, Hayley started aspirating her formula into her lungs and even stopped breathing on me (scariest thing that has ever happened to me).

We were admitted to our local children's hospital in the PICU and she even had to be put on a ventilator for over a week. Everyone thougt it was reflux and she ended up with a Nissen Fundoplication surgery (which is basically wrapping the stomach so nothing can come up) So she cannot vomit, cannot burp, ect. She also had a feeding tube placed so that we could vent the extra air and gas from her tummy until her body adjusted to the Nissen (the feeding tube was removed about 4 months later and never used for feeding). We stayed in the hospital until she recovered from the surgery. Several weeks in all.

We then went home only to return to the hospital 2 days later because she was still having respiratory problems. They then did a sweat test and tested for Cystic Fibrosis. It was June 1, 2004 and I still remember that day as if it were yesterday. It was the worst day. The test came back positive for Cysitc Fibrosis (CF) and Hayley carries the two most common CF genes Delta F508.

Our lives changed that day. Lots of medications, chest percussion, vest therapy, breathing treatments, enzymes, ect. became the norm for us. Hayley currently does over 2 hours of vest and breathing treatments per day just to help keep her healthy. She is doing fairly well, but for some reason, she just does not seem to respond to oral antibiotics well and needs to have IV antibiotics frequently. She had a port-a-cath (infusion port) surgically inserted about 2 years ago and that was the best decision we ever made. It has made blood draws and IV antibiotics so much easier.

Hayley is only 6 and has already been hospitalized 15 times (including her diagnosis). She has had a rough go of it, but her PFT's (lung function test) remain pretty good (she is still getting the technique of doing the tests right). She is a real trooper. She is usually a happy girl even when sick.

We have several other friends who had been granted wishes from Make A Wish. We had always thought we would wait until she was older before we would do a referral to Make A Wish so that we could make sure that she really knew what she wanted to wish for, but then decided to go ahead and do it sooner than later. You just never know what tomorrow will bring. Some other CF parents I chat with on other websites have questioned why we did the referral now (insinuating that we should have waited or Hayley is not "sick enough")

My thoughts are that we don't know what tomorrow will bring. Hayley qualifies for a wish and we wanted her to still be healthy enought to enjoy her wish, without having to be on oxygen, ect. Hayley is so excited about going to Disney World and Give Kids the World. And just like all the other kids here she deserves this wish. She has had to go through more in her short 6 years on this earth than any kid should have to go through and she has a lifetime of dealing with this horrible disease in front of her. Anyway, I will get off my soapbox now and end this since I seem to be rambling.

[pipersmom]

Hi Becky! I have to admit, your story almost had me in tears, just because it is so similar to what Piper and I go through, and as you know, that's unusual for CF kids their age. I am so looking forward to following along with your PTR, and know my pm box is always open if you need to vent/whine/cry/throw a tantrum or just talk! I definitely understand exactly what you go through! :hug:

[maroo]

:welcome: to the world of Wish Trips!

I am so glad you have started a pretrip report and so glad that Amanda already found you! :thumbsup2

Hayley is going to have a BLAST on the trip and I am so glad that you guys decided to go while it will be so magical and she will be healthy to enjoy it!

So glad you guys have joined us and so glad you are doing a pre-trip report!! :)

I will be there Thanksgiving week - so maybe our paths will cross! :)


To answer your question...not sure if I have seen any wish kids do tea with the princesses? But it sounds like FUN! :)

[rcq925]

Hi Becky! I have to admit, your story almost had me in tears, just because it is so similar to what Piper and I go through, and as you know, that's unusual for CF kids their age. I am so looking forward to following along with your PTR, and know my pm box is always open if you need to vent/whine/cry/throw a tantrum or just talk! I definitely understand exactly what you go through! :hug:

Thanks Amanda! I have been reading Piper's PTR and trip report with special interest as Piper and Hayley both have CF. I am so glad that you are home and Piper is feeling better. I am looking forward to getting to know you guys! My pm box is always open for you as well. :)

:welcome: to the world of Wish Trips!

I am so glad you have started a pretrip report and so glad that Amanda already found you! :thumbsup2

Hayley is going to have a BLAST on the trip and I am so glad that you guys decided to go while it will be so magical and she will be healthy to enjoy it!

So glad you guys have joined us and so glad you are doing a pre-trip report!! :)

I will be there Thanksgiving week - so maybe our paths will cross! :)


To answer your question...not sure if I have seen any wish kids do tea with the princesses? But it sounds like FUN! :)

Thanks Maroo for the warm welcome and for starting this Wish Trip Thread! Maybe we will cross paths!

[maroo]

Thanks Maroo for the warm welcome and for starting this Wish Trip Thread! Maybe we will cross paths!

So glad you found us! :)

The Wish Trippers thread was originally started by Wendy - it was such a great idea, but I can't take credit! :goodvibes

I love how folks get to know each other on the thread and develop friendships that will last a lifetime!

[Momofwishkid]

Hi, Haley's story is incredible. Im so glad she is getting her wish to go to Disney and I cant wait to follow along!

[llaxton]

My husband has a Delta 508 mutation. I will be following along as well!

[rcq925]

We have our dates!!!!

--------------------------------------------------------------------------------

Our Make A Wish Volunteer called today and said our doctor got the paperwork right back to them and we get our first choices dates for our trip!

We will be at GKTW from November 14th to November 20th!!! The week before Thanksgiving, but all the Christmas decorations will be up and MVMCP (not sure if the letters are in the right order) will be in full swing. Not sure if we will be going to the Christmas party, but we will try to fit it in.

I know it is 6 months away, but I am already so excited and in full planning mode. Trying to decide which restaurants I want to try and get ADR's for. We have done most of the Character Dining before when we went to Disney wtih Grandma 2 years ago (she was paying!) We ate at Cinderella's Royal Table, Chef Michey's and Crystal Palace. We love Ohana and will eat there for sure.

Anyone else have any other suggestions for meals at Disney or good restaurants at Universal?

We will try to eat at GKTW most of the time, but I would like to plan 2 or 3 special meals out (one being Ohana).

Thanks for letting me share our good news!!!

[kdzbear]

Yeah for dates! I think you are going the perfect week. We went about four days later last year and the closer it got to Thanksgiving the crazier it was. If you can go to MVMCP, it is a lot of fun. Tyler was able to ride Aladdin's Carpet ride with a Country Bear. The parade and shows are a lot of fun! I am looking forward to hearing your plans for your trip!

I also love how you spell Hayley's name. That is how I spell my daughter's name too! :cutie:

[rcq925]

Thanks! It is the unusual spelling of Hayley. She hates that she can never find personalized items with her name spelled right!

MVMCP sounds great! I had no idea you could ride the rides with costume characters! That sounds fun!:goodvibes

[kdzbear]

Thanks! It is the unusual spelling of Hayley. She hates that she can never find personalized items with her name spelled right!

MVMCP sounds great! I had no idea you could ride the rides with costume characters! That sounds fun!:goodvibes

Riding with characters is kind of hit or miss. I was told that the Country Bears like to ride the Magic Carpets during parade times and when it is slower, but there is no guarantee that they will do this. Your daughter will get to see many of the princesses in their winter outfits with their princes. I have tons of pictures of the party in Tyler's Wish report. It was worth going to.

As for Hayley's name spelling, tell her it is the best way to spell it! My name is not that unusual, but no one spells it Kristin. It is always Christin, Kristen, Kristine so I know where she is coming from. Later on she will like being unique! :cheer2:

[rcq925]

Our Make A Wish person e-mailed and gave us a few choices for our flights. Luckily they are non-stop, just a little over 2 hours.

We chose to leave for Orlando at 7am and arrive at 9:12am. More time at GKTW! We will depart Orlando around 4:10pm coming back and arrive at 6:25pm. So awesome flight times!!!

The airport we are flying out of is 2 hours away from us, so we will be staying the night in Indianapolis at a hotel near the airport, since we will need to be there at 5am!!

We should be getting a limo ride for the 2 hour trip to Indianapolis and we are all so excited already. I can't believe it is 6 months away, but I know it will go fast!!!:goodvibes

[wishin' on a star]

Just wanted to say hi! I'm glad Hayley is getting her wish to go to Disney World! We decided to go ahead and have Catherine's wish granted because she was doing so well. There are no guarantees that tomorrow or next year will be a better time. For us, it is truly a celebration of how great she is going.

I'd love to go to Disney at Christmas time!

[maroo]

Those are great flight times!

and a 2 hour LIMO ride!! Woo Hoo!! :woohoo::woohoo::woohoo::woohoo:

[cantwaittoseemickey]

I already commented on the Wish Trippers thread but wanted to shout out on your ptr:) I am so glad Hayley recieved her wish to Disney World. She is such a cutie. What a lovely family!

I totally understand what Hayley means not being able to find personalized things with her name on it. My name is LaTonya and I think I have only ever found ONE thing with my name on it:rotfl2: So it's easier for me to go by Tonya:thumbsup2

Again I am so excited for your 2 hour limo ride. Wow that is the coolest! Have fun watching all of the airplanes from your hotel window at the Indy airport. We flew out of there in 08 and spent hours just watching them come and go from our hotel window!

[kellyw8863]

Hey there! You have a beautiful family, and I'm so glad that Hayley is getting her wish.:goodvibes Congrats on dates, and those are great flight times. You all are going to have such a good time!:thumbsup2

[rcq925]

So I get an e-mail from our wish coordinator and she asks me if Hayley would like to eat breakfast with the Princesses.

Well of course!!! I did request that it be at the castle (I know they have a princess breakfast somewhere in Epcot) but since her actual wish was to sleep in Cinderella's castle, we requested to have breakfast in the castle and she said she would set it up! Woo Hoo!!

So excited now! We ate lunch in the castle 2 years ago and Hayley loved it!!! We were not going to do it this time because it costs SO MUCH! But now we get to do it!!:cool1:

[maroo]

Woo Hoo!!! :)

that is so awesome!!!

[Brook1099]

I hope you and your and your family have a MAGICAL trip! Nov is a beautiful time to be in Florida.

[cantwaittoseemickey]

Aw that is so great!! Yay!!

[wish_upon_a_star35]

YAY for Hayley!!! She is going to LOVE having breakfast with the princesses!

[D1sneymum]

Oh my goodness reading your story about your daughter deserving to go to WDW brought tears to my eyes! Just wish stories in general Haley and Ali both my goodness! You don't and shouldn't have to justify your reasons why Haley deserves to go to WDW! I believe you want your daughter to have the most magical and wonderful time without having to be on oxygen and other things. I think you've made a great decision and if MaW believes your daughter deserves it now then so be it! Have the best time of your life and make it special!
We have a radio station here in TX that raises money every year for 1 day for 200 families and in Nov they take off for a week it's called Kidds kids and I listen to it every morning especially when they are in WDW and hearing the families and kids talk about how wonderful WDW is I'm balling like a baby dropping off my kids at school. They don't say anything or really ask questions. I think they know those kids are sick and they just listen to what they are saying! It's amazing what kids understand at young ages. I'm just so happy for all of them there enjoying themselves at WDW!

[rcq925]

Oh my goodness reading your story about your daughter deserving to go to WDW brought tears to my eyes! Just wish stories in general Haley and Ali both my goodness! You don't and shouldn't have to justify your reasons why Haley deserves to go to WDW! I believe you want your daughter to have the most magical and wonderful time without having to be on oxygen and other things. I think you've made a great decision and if MaW believes your daughter deserves it now then so be it! Have the best time of your life and make it special!
We have a radio station here in TX that raises money every year for 1 day for 200 families and in Nov they take off for a week it's called Kidds kids and I listen to it every morning especially when they are in WDW and hearing the families and kids talk about how wonderful WDW is I'm balling like a baby dropping off my kids at school. They don't say anything or really ask questions. I think they know those kids are sick and they just listen to what they are saying! It's amazing what kids understand at young ages. I'm just so happy for all of them there enjoying themselves at WDW!

Thank you so much!

And thanks for all the replies!

[yinyanggirls]

Hi there! I subbed right in the beginning but just caught up. I had to make myself hold back on the reading until I got our TR started!

I can't believe how fast you got your dates approved and your flight times! That's great! It will be so much easier to plan those special meals and anything else your family would enjoy. Sounds like you chose a great week to go and those flight times are awesome!!!!:thumbsup2

[rcq925]

:cool1:So I just made my first ADR for our day of arrival !! :cool1:

I made it at T-Rex in Downtown Disney for dinner on our arrival night. We will be arriving in Orlando at 9:15am so I figure we can explore GKTW during the day and possibly make it to Downtown Disney that evening. I know it may not happen as planned, but this is the first day I could make an ADR and we will not be going to any of the parks on arrival day.

Has anyone else eaten at T-Rex? I have heard it is similar to Rainforest Cafe (which my kids love) but with dinosaurs (which they also love). I also heard the food is pretty good and would welcome any reviews from anyone who has been there!!

We are finally at less that six months to go and I am SOO EXCITED!!!!:cool1:

[maroo]

I love the Rainforest Cafe.

The only thing I have really heard re: T Rex is that it is quite loud in there.

Woo Hoo on your first ADR!

You could also go to Chef Mickey's at the Contemporary. You would get a head start on meeting the characters and even be able to watch Wishes from the 4th floor observatory (outdoor viewing spot where they pipe the music in for ya). I love eating at CM's because of the monorail overhead. Very cool! And very Disney!

Or to the Animal Kingdom Lodge (Boma is great!) and explore over there. If you wanted some other "non park" restaurant ideas. :)

[cantwaittoseemickey]

Congratulations on your first adr:banana: T Rex sounds pretty neat. We liked Rainforest Cafe's food too.:thumbsup2

[D1sneymum]

We ate at the T-Rex last year. We loved it! more than the Rainforest. But that's our opinion. The meteor shower was nice too. All the dinos come to life. We made ADR for this year as well! For us it's s must do! Yum!

[wishin' on a star]

We ate at T-Rex last week, same as you are planning, on our first day there. It was great...loud, but the kids still loved it. The food was pretty good, quite a variety of things on the menu, I think.

The only thing to think about is the orientation at GKTW. They offered one at 3:00 the day we arrived, so we did that and then headed to Downtown Disney and really enjoyed the evening. I don't think they always offer a midday orientation like that though, so keep it in mind! There were several check-ins that morning/early afternoon, so they were trying to accomodate a few families at one time.

[cindyf]

Just wanted to say how happy I am for Hayley and for you! I am the program coordinator for the CF center in Portland Maine, AND a disney vacation club owner and disney planning freak! You can have almost as much fun planning over the next six months as you will on your trip! My family is headed to the mouse house on July 31st to celebrate my daughter's 16th birthday and my husband and my 20th anniversary! I'll be following your progress as you plan for your magical adventure! Enjoy every minute!
earfully, Cindy

[rcq925]

Just wanted to say how happy I am for Hayley and for you! I am the program coordinator for the CF center in Portland Maine, AND a disney vacation club owner and disney planning freak! You can have almost as much fun planning over the next six months as you will on your trip! My family is headed to the mouse house on July 31st to celebrate my daughter's 16th birthday and my husband and my 20th anniversary! I'll be following your progress as you plan for your magical adventure! Enjoy every minute!
earfully, Cindy


Thanks Cindy! I am so excited about the planning! We can't wait, we find ourselves talking about the trip all the time! I want to get everyones favorites in, so we keep talking about it alot!!


We ate at T-Rex last week, same as you are planning, on our first day there. It was great...loud, but the kids still loved it. The food was pretty good, quite a variety of things on the menu, I think.

The only thing to think about is the orientation at GKTW. They offered one at 3:00 the day we arrived, so we did that and then headed to Downtown Disney and really enjoyed the evening. I don't think they always offer a midday orientation like that though, so keep it in mind! There were several check-ins that morning/early afternoon, so they were trying to accomodate a few families at one time.

I am so glad your family liked T-Rex. I had heard that sometimes they have afternoon orientation. I think maybe I will make a later in the evening reservation at T-Rex as well, just in case. Will they let me make two reservations at the same restaurant in one day?:confused3

[rcq925]

We are finally down to less than 5 months before our trip! We have a busy summer, then school will start and I am hoping that time just flies!!

We have some ADR's set and I think a plan of where we are going on each day, but I understand that this may change. I have already changed it several times, so I think I will wait until it gets closer before I post it on here.

Make A Wish is paying for us to have breakfast at the castle with the princesses and Hayley is very excited about that!

We also want to attend the Mickey's Very Merry Christmas Party. Does anyone know how I buy tickets to that now to make sure we get them before the party sells out?

I am really enjoying reading all the Trip Reports and Pre-Trip Reports for the MAW trips! I love seeing all the pictures and all the smiles! Can't wait until it is my turn to post my TR!

[kdzbear]

We are finally down to less than 5 months before our trip! We have a busy summer, then school will start and I am hoping that time just flies!!

We have some ADR's set and I think a plan of where we are going on each day, but I understand that this may change. I have already changed it several times, so I think I will wait until it gets closer before I post it on here.

Make A Wish is paying for us to have breakfast at the castle with the princesses and Hayley is very excited about that!

We also want to attend the Mickey's Very Merry Christmas Party. Does anyone know how I buy tickets to that now to make sure we get them before the party sells out?

I am really enjoying reading all the Trip Reports and Pre-Trip Reports for the MAW trips! I love seeing all the pictures and all the smiles! Can't wait until it is my turn to post my TR!

T-Rex is a lot of fun. We have walked through the one in DTD, but we have not eaten there. There only other one and the first one is in Kansas City and Tyler loves to eat there after doctor's appointments when we travel up there. The portion sizes for adults are generous and you can probably share a meal. If you have a Rainforest Safari card, then you also get a free appetizer.

As for MVMCP (Christmas Party), you can purchase the tickets at Disney.com. Just go to tickets and special events. I would not worry too much about the date you are going selling out. It is normally the ones that are later in December that sell out.

I also wanted to let you know that we went about the same dates last year and it was still quite warm out. I packed sweatshirts and long pants and did not need them at all. I know that a cold front could come through so you might want a few each, but I was surprised that we were able to wear shorts even at 3 am one night and not be cold.

You sound like you are way ahead on your planning! :wizard:

[cantwaittoseemickey]

:cool1: yay on less then 5 months! Sounds like you all have a very busy summer. We might try to do a walk in T-Rex after we walk through it to see how it is. I hope you all like it.

[LydRos]

I stumbled upon this site while planning my daughters wish trip and was surprised to see that we had the same dates November 14-20. We will also be staying at GKTW. How interesting. Looking forward to reading more about your planning.

[rcq925]

I stumbled upon this site while planning my daughters wish trip and was surprised to see that we had the same dates November 14-20. We will also be staying at GKTW. How interesting. Looking forward to reading more about your planning.

Well hello there! You are the first one that I have "met" on here that will be there at the same time as us!! How exciting!:cool1:

We cannot wait for the trip and are almost down to less than 4 months to go ( you too!:goodvibes:goodvibes)

Feel free to start a PTR of your own and post on the Wish Tripper thread! I would love to hear about your planning as well!:banana:

[maroo]

I stumbled upon this site while planning my daughters wish trip and was surprised to see that we had the same dates November 14-20. We will also be staying at GKTW. How interesting. Looking forward to reading more about your planning.

Hi there! :)

I just wanted to send you a personal invitation to join us on the wish trippers thread! :goodvibes

You guys have picked a great week to go to Disney! You get the Christmas stuff without the Christmas crowds! :thumbsup2

[rcq925]

We are finally down to the four month mark today!! :cool1:

I keep reading all the TR's and new PTR's and finally someone from the DIS is joing us at GTKW the same week!

We are heading to Memphis tomorrow for a mini-vacation with my mom, sister and nephew (hubby's are staying at home, so just the girls and the kids!) We are headed to Graceland, which my mom has always wanted to visit! She is a huge Elvis fan!! We are also headed to the Memphis zoo to see Pandas!! Anyone who lives near Memphis or has visited in the past feel free to give any tips, suggestions or restaurants you think we should try!!

[cantwaittoseemickey]

Have a great trip! My sister is going down to Graceland in August. She LOVES Elvis. Yay for 4 months!!!:cool1:

[rcq925]

Have a great trip! My sister is going down to Graceland in August. She LOVES Elvis. Yay for 4 months!!!:cool1:

Thanks Tonya! I have already subbed to your TR and cannot wait to read more and see more pictures!! :thumbsup2

Graceland was actually really neat, even for someone like me, that is not a huge Elvis fan. The Memphis Zoo was just okay. I loved seeing the Pandas, but the zoo is so large and all spread out, a really exhausting day. And a lot of the stuff seemed to be not open yet or operating. Like they had a whole little section with kiddie rides, however, none of them were running? Hmm! :confused3


We have fantastic children's zoo here in Fort Wayne, Indiana (rated one of the 10 best zoos in Parenting Magazine!), so maybe I am just spoiled, but I really wasn't impressed by the Memphis Zoo.:sad2:

And boy is it hot down south! And that humidity is killer! I am so glad that we decided to wait until November to do our wish trip when hopefully the weather will be much cooler!!:goodvibes

[Mom2mitokids]

Hi Becky,

I'm a newbie so going through all the PTR. I want to say that you have a beautiful family. Glad that Hayley got a wish to go to Disney World. My youngest got a wish to go to DW back in Nov.08. Now my other daughter was granted a wish and wants to go back. Our first date are for Nov.14th-20th. Our second dates are in March. It was a great time to go in Nov. though it happened to be the coldest week when we were there. Not sure we will get to go in Nov. since it's coming up and sure it's booked. Hopefully next week we will have dates.

[Haybuggsmom]

I am so excited to keep reading abour you Hayley's preperations and trip!!!

[Mom2mitokids]

Hi Becky...Just seeing how everything is going?

[rcq925]

Hi Becky...Just seeing how everything is going?

Thanks for checking on me!:goodvibes

Things in general are going well. Hayley is doing very well right now, summer is usually her good time. I am just hoping we can keep her health in the beginning of fall for her trip!

School starts in less than 3 weeks now, so I am hoping that makes the time go faster. Also hoping that their teacher's aren't upset about them missing a week of school for our MAW trip. But with Hayley and her CF it would have been too hard for her to go in the summer. It is just too hot and humid, which really affects her breathing. My mom took us to Disney in June of 2008 the first week right after the kids got out of school. We had a great time, but it was soo hot! We had to get up early and be at the parks in the morning, then take an afternoon break to swim and cool down and then try to go back to the parks, and she was just really exhausted. We only got to see one firework show (Illuminations). So the kids have never seen Wishes or Fantasmic. I don't think it will work out to see Fantasmic this trip as it is only showing two nights (one of which is Thursday night- Christmas Party night at GKTW and Tuesday night, and we are hoping to attend
MVMCP that night)

Anyway, now I am starting to ramble. I am getting an idea of which park on which day now, but I also realize that can change. I am hoping to do both Universal parks in one day and also Seaworld, as I don't know if we would get back to those parks ever on a future trip. I am sure we will be back to Disney at some point again somewhere down the road.

Speaking of Univeral and Sea World. ANy recommendations for where to eat in any of those parks or any can't miss things there? I would appreciate hearing about favorites of those of you who have already gone!!

[J'sMum]

Thanks for checking on me!:goodvibes

Things in general are going well. Hayley is doing very well right now, summer is usually her good time. I am just hoping we can keep her health in the beginning of fall for her trip!

School starts in less than 3 weeks now, so I am hoping that makes the time go faster. Also hoping that their teacher's aren't upset about them missing a week of school for our MAW trip. But with Hayley and her CF it would have been too hard for her to go in the summer. It is just too hot and humid, which really affects her breathing. My mom took us to Disney in June of 2008 the first week right after the kids got out of school. We had a great time, but it was soo hot! We had to get up early and be at the parks in the morning, then take an afternoon break to swim and cool down and then try to go back to the parks, and she was just really exhausted. We only got to see one firework show (Illuminations). So the kids have never seen Wishes or Fantasmic. I don't think it will work out to see Fantasmic this trip as it is only showing two nights (one of which is Thursday night- Christmas Party night at GKTW and Tuesday night, and we are hoping to attend
MVMCP that night)

Anyway, now I am starting to ramble. I am getting an idea of which park on which day now, but I also realize that can change. I am hoping to do both Universal parks in one day and also Seaworld, as I don't know if we would get back to those parks ever on a future trip. I am sure we will be back to Disney at some point again somewhere down the road.

Speaking of Univeral and Sea World. ANy recommendations for where to eat in any of those parks or any can't miss things there? I would appreciate hearing about favorites of those of you who have already gone!!

You know i never thought of trying to do universal all in one day.. wonder if it is possible hmmm :) things to ponder hehe, cause if it is possible then seaworld would become a definate choices choices.. Thanks for the idea

and well Rambling is a specialty of mine !! love it

[Mom2mitokids]

Thanks for checking on me!:goodvibes

Things in general are going well. Hayley is doing very well right now, summer is usually her good time. I am just hoping we can keep her health in the beginning of fall for her trip!

School starts in less than 3 weeks now, so I am hoping that makes the time go faster. Also hoping that their teacher's aren't upset about them missing a week of school for our MAW trip. But with Hayley and her CF it would have been too hard for her to go in the summer. It is just too hot and humid, which really affects her breathing. My mom took us to Disney in June of 2008 the first week right after the kids got out of school. We had a great time, but it was soo hot! We had to get up early and be at the parks in the morning, then take an afternoon break to swim and cool down and then try to go back to the parks, and she was just really exhausted. We only got to see one firework show (Illuminations). So the kids have never seen Wishes or Fantasmic. I don't think it will work out to see Fantasmic this trip as it is only showing two nights (one of which is Thursday night- Christmas Party night at GKTW and Tuesday night, and we are hoping to attend
MVMCP that night)

Anyway, now I am starting to ramble. I am getting an idea of which park on which day now, but I also realize that can change. I am hoping to do both Universal parks in one day and also Seaworld, as I don't know if we would get back to those parks ever on a future trip. I am sure we will be back to Disney at some point again somewhere down the road.

Speaking of Univeral and Sea World. ANy recommendations for where to eat in any of those parks or any can't miss things there? I would appreciate hearing about favorites of those of you who have already gone!!

I know what you mean about Summer. My kids couldn't handle the heat. Can Hayley do indepenent study? I know here if they miss 5 or more days they can do this and they aren't considered absent. The only down fall is all work is due when the child comes back. The school may give her extra time since it's her Wish trip.

I think you can do both parks. My kids will want to stay at each park all day. They love the rollercoasters. At Sea World we ate at The Terrace Cafe. They were pretty good. It's a sandwich place. They even gave free samples of beer. Universal..I would say Shrek 4D, Jaws, barney if she like him, and Animal actor show. Sea World...Believe show, Clyde and seamore show, Blue Horizon, Pets Ahoy, that's all I remember.

[Mom2mitokids]

Oh..I forgot dining in Universal. I heard MARGARITAVILLE was really good. I want to eat there when we go. Bubba Gump(that's a sea food restaurant). Those are on City Walk though. We just ate at quick dining palce. I forgot the name now.

[cantwaittoseemickey]

We went in June of 08 also. It was awful. Poured rain it and it was miserably hot. Worst trip we have EVER had lol ok well maybe not the Branson trip might be a tie lol. But looking back we were so unprepared. Ty's Wish trip in July was very hot and it did rain but we were more prepared.Poncho's hat and headphones helped make the difference;)

We didn't eat at Sea World except Tim got an icecream. We ate at Luigies(sp?) at Universal. They have pizza and it was sooo good. Or else we were just so hungry lol. We did Universal in one day. We didn't ride alot of rides but I think it could have been doable. We loved Sea World and could have spent all day there but Christmas was that night so we cut out a bit early. I think if you are really into shows and animals you might want to spend a full day there.We had to hurry up and sprint across the park to get to Believe because it was the only show time we had time to see before we wanted to head out to GKTW. I would have loved to see the Clyde and Seymore show I bet that was cute:)

[yinyanggirls]

Universal can totally be done in one day. We did IOA one afternoon, after we need to sleep in. We did US one morning. If you pick your priorities and just skip the other stuff it'll be easy!

Sea World took way longer than I thought it would. I would walk it differently now that I know. Again, pick your priorities ahead of time and you'll be fine.

We loved Shark's Underwater Grill, at SW. Expensive but worth it, we thought. Didn't eat at US, but my friend and I walked around the Citywalk area at night and they all looked good. If you have a fave style go with. Bubba Gump, Margaritaville, Bob Marley, NASCAR, Hard Rock. Margaritaville and BG seemed closest to the main walkway, but none were too far out of the way except for Hard Rock. Saw it across the water, not sure how to get there.

[rcq925]

We have just been invited to be part of the Big Give! I am so excited after seeing all of the wonderful things on past PTR's. I know this is a group of true angels that really dedicate their time and skills to make wish trips even better!

Thank you from the bottom of my heart for selecting Hayley and our Family to be part of the Big Give!:banana:

We also had other fun news to celebrate. One of Hayley's make A Wish Volunteers, Karen, works for our local minor league baseball team the Tin Caps. She invited us to the game last night and Hayley got to throw out the first pitch of the game:banana: She was so excited and had so much fun! They said her name, that she was 6 years old and that she has Cystic Fibrosis. They also said that we were going on a Make A Wish trip to Disney in November and they showed her with her name and the Make A Wish logo on the big Jumbo scoreboard! I will post a picture later tonight or tomorrow. We got home late from the game and I am at work now.

Karen also got us awesome seats for the game right behind home plate! It was a great night, but VERY HOT!!! We may have sweated off a few pound, which my hubby and I could use!

We are almost down to less than three months and getting very excited!:cool1:

[kayrason333]

Yea!!! Congrats on The Big Give!! :thumbsup2
cant wait to see some pics of the baseball game!

[rcq925]

So here is Hayley with her name on the big score board and behind her name is says Make A Wish in blue, but it kind of hard to read in the picture.

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5160.jpg

Here she is throwing the pitch!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5161.jpg

Here is a pic of my hubby and son Nathan and a our view from our awesome seats!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5156.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5165.jpg

[Mom2mitokids]

So here is Hayley with her name on the big score board and behind her name is says Make A Wish in blue, but it kind of hard to read in the picture.

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5160.jpg

Here she is throwing the pitch!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5161.jpg

Here is a pic of my hubby and son Nathan and a our view from our awesome seats!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5156.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5165.jpg
Awesome pictures. I bet you were beaming from ear to ear. Congrats Hayley for a great first pitch!!

[wishin' on a star]

THAT is the coolest! Thanks for sharing the pics. My DH will be jealous. He is a baseball fanatic. :goodvibes

Woo Hoo for the Big Give. Seriously, the hearts of the big givers are huge :lovestruc, and they do so much to add to the magic of our wish trips!

[cantwaittoseemickey]

:banana::banana: For being a part of the BIG GIVE!! I can't wait to see Hayley's smiles and goodies! How awsome is that to get to throw out the first pitch!!! Glad you all had a great time!:cool1:

[hgpiglet]

How cool that she got to throw out the first pitch! Can't wait to read more about your plans!

[kayrason333]

Love the pictures!! I bet she loved doing that!

[J'sMum]

Aww Thats amazing that they did that for her with 1st pitch ! thats so special and wonderful , ty for sharing pics and YAY @ big give sooo can't wait to see pics too :grouphug:

[maroo]

Oh my gosh - how cool!!!!!

Some kids just wish for THAT!

what a cool thing to do! :) Glad you had such a great time! :goodvibes

[rcq925]

So excited that we are finally under the 3 month mark! School starts next Monday on August 23rd and hoping that time just flies once we get busy with school, homework, ect.

Hope everyone is doing well!:goodvibes

[my*2*angels]

HI!!!! I am subscribing so I can watch as the magic starts coming your way!!!

[rcq925]

HI!!!! I am subscribing so I can watch as the magic starts coming your way!!!

Thanks for coming along for the ride and for choosing our family for the Big Give!!:goodvibes

[yinyanggirls]

Totally cool!

[hgpiglet]

How exciting getting picked for the Big Give!!!!!

[Mom2mitokids]

So excited that we are finally under the 3 month mark! School starts next Monday on August 23rd and hoping that time just flies once we get busy with school, homework, ect.

Hope everyone is doing well!:goodvibes

Want to trade ticker:rotfl: Glad you are under the 3 month mark.

[that's nice]

For some reason I thought I was subbed to your thread... :confused3:confused3

Subbing now! :surfweb:

How awesome that Hayley was chose to throw out the first pitch at a baseball game! Did she get to keep the ball or get it signed?


Congrats on the Big Give!!!!! :woohoo:

[rcq925]

For some reason I thought I was subbed to your thread... :confused3:confused3

Subbing now! :surfweb:

How awesome that Hayley was chose to throw out the first pitch at a baseball game! Did she get to keep the ball or get it signed?


Congrats on the Big Give!!!!! :woohoo:

Thank you for subbing! Hayley did get to keep the ball and got it signed by the team mascot. She was thrilled!

We are VERY excited about the Big Give and feel very blessed to be part of it!

[tmh0206]

just joining in to follow along...congrats on your trip! what part of Indiana are you from...based on your husbands employment I think you might be close to where I live.

[rcq925]

just joining in to follow along...congrats on your trip! what part of Indiana are you from...based on your husbands employment I think you might be close to where I live.

Thanks for joining along! We live in Fort Wayne, Indiana. Where do you live in Indiana?

[tmh0206]

Thanks for joining along! We live in Fort Wayne, Indiana. Where do you live in Indiana?

we live about 6 hours south in Boonville (near Evansville), but the company I work for is located in Ft Wayne.

[rcq925]

So let me know what you guys think! I have read enought PTR's and TR's to know that this can change and I will have to TRY and go with the flow if it does!!!:goodvibes

Hayley’s Make A Wish Trip Itinerary


Sunday, Novemer 14th

- Arrive at Give Kids the World (flight arrives at 9:12am in
Orlando :goodvibes )
- Explore Give Kids the World (Do Hayley’s star, make pillows, ect.)
- GKTW orientation (time unknown, hopefully afternoon)
- Candyland Game at GKTW 7:30pm
- ADR at T-Rex Downtown Disney at 4pm if we want to


Monday, November 15th

- Magic Kindgom Day
- ADR at Cinderella’s Royal Table- 9:00am
- ADR at O’hana (Poly Resor) – 5:00pm
- Back to MK for Wishes ????- 8:00pm or back to GKTW for
Double Dare 8:00pm


Tuesday, November 16th

- Universal Studios Day
- Do both parks all day
- Possibly Downtown Disney for shopping if we have time
- Family Fun Night at GKTW starts at 7:30pm


Wednesday, November 17th

- Epcot and Hollywood Studios
- Epcot first (do Kim Impossible Mission in the World Showcase)
- Hollywood Studios in the afternoon
- ADR at Sci-Fi Dine-In at 7:05pm
- See Osbourne Lights before leaving


Thursday, November 18th

- Sea World Day
- GKTW Christmas Party starts at 6:30pm


Friday, November 19th

- Animal Kingdom morning and early afternoon
- Afternoon break at GKTW
- Mickey’s Very Merry Christmas Party at Magic Kingdom 4pm to 12am


Saturday, November 20th

- Departure day :sad2:
- Flight leaves at 4pm
- Sleep in a little, enjoy GKTW until we need to head to the airport
- Horseback riding at Keaton’s Corral- GKTW 8:00am-11:00am
- Possibly check out Downtown Disney if we did not have time before


So let me know what you think! I am getting so excited. 2 months, 2 weeks and 1 day until we arrive at Give Kids The World!!:cool1:

[rcq925]

So a little boy rang the doorbell selling boy scout popcorn and what did we find when we opened the door? OUR FIRST BIG GIVE PACKAGE!!! The mail mail had put it between the storm door and the front door!

It is from Melissa B. THANK YOU SO MUCH MELISSA!!!!!!:goodvibes



http://i958.photobucket.com/albums/ae62/rcq925/IMG_5352.jpg

Very excited and wanting to open it now! But I had to take the picture!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5355.jpg

What's inside?

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5356.jpg

A perfect bag just for "Princess Hayley" Complete with Cinderella's Carriage!!! WOW, can you tell she loved it?:confused3

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5357.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5358.jpg

She wanted to sleep with her new bag, but I convinced her that she needed to keep it nice for the trip! It will be a great carryon bag for her to carry herself on the plane!!

THANK YOU SO MUCH MELISSA!!! IT REALLY MADE OUR DAY TO GET OUR FIRST BIG GIVE PACKAGE!!!

[kdzbear]

The bag is so beautiful! Congratulations on the Big Give! Hayley and her brother have the most beautiful smiles! :banana:

[that's nice]

I think your itinerary looks great!

One thing to think of is on Monday your 'Ohana meal is going to take till about 7. You might want to get there a bit early to check in (20 minutes early) if you want to make it back to MK to see SpectroMagic or Electrical Parade (or whatever it is called now :confused3). Keep in mind that Main St. will be jammed and it might be a pain to push through all those people to get towards the castle. If you do go back, walk through the Emporium on the left hand side. It might be faster. Plus you need to watch Wishes from the Hub if you want to see Tinker Bell fly!

Anyways, if dinner takes long and you don't think you are going to make it, you can watch Wishes from the beach at the Poly and see everything. The music from Wishes is piped in to the beach.

I love the bag Hayley received!!!!!! AWESOME!!!!:goodvibes

[my*2*angels]

WOW! The magic has already started! So glad Hayley loves her bag! Melissa did such a FANTASTIC job on it! Your kids are absolutely ADORABLE!

[rcq925]

WOW! The magic has already started! So glad Hayley loves her bag! Melissa did such a FANTASTIC job on it! Your kids are absolutely ADORABLE!

Thank you! I think they are adorable too!:goodvibes

Melissa did a WONDERFUl job with the bag! Hayley loves it! :thumbsup2

[rcq925]

I think your itinerary looks great!

One thing to think of is on Monday your 'Ohana meal is going to take till about 7. You might want to get there a bit early to check in (20 minutes early) if you want to make it back to MK to see SpectroMagic or Electrical Parade (or whatever it is called now :confused3). Keep in mind that Main St. will be jammed and it might be a pain to push through all those people to get towards the castle. If you do go back, walk through the Emporium on the left hand side. It might be faster. Plus you need to watch Wishes from the Hub if you want to see Tinker Bell fly!

Anyways, if dinner takes long and you don't think you are going to make it, you can watch Wishes from the beach at the Poly and see everything. The music from Wishes is piped in to the beach.

I love the bag Hayley received!!!!!! AWESOME!!!!:goodvibes

I am thinking we may just skip wishes that night. Grandma (my mom) said she would buy us tickets to the MVMCP party, so we will see the special holiday fireworks that night. We are planning that for our last night! Monday will be our first full park day and we will probably be tired. I love the idea of ending our last park day at the Magic Kingdom with a the MVMCP!:goodvibes

[Mom2mitokids]

So a little boy rang the doorbell selling boy scout popcorn and what did we find when we opened the door? OUR FIRST BIG GIVE PACKAGE!!! The mail mail had put it between the storm door and the front door!

It is from Melissa B. THANK YOU SO MUCH MELISSA!!!!!!:goodvibes



http://i958.photobucket.com/albums/ae62/rcq925/IMG_5352.jpg

Very excited and wanting to open it now! But I had to take the picture!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5355.jpg

What's inside?

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5356.jpg

A perfect bag just for "Princess Hayley" Complete with Cinderella's Carriage!!! WOW, can you tell she loved it?:confused3

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5357.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5358.jpg

She wanted to sleep with her new bag, but I convinced her that she needed to keep it nice for the trip! It will be a great carryon bag for her to carry herself on the plane!!

THANK YOU SO MUCH MELISSA!!! IT REALLY MADE OUR DAY TO GET OUR FIRST BIG GIVE PACKAGE!!!

What a very cute bag.

[hgpiglet]

That is a really cute bag, and I LOVE her smile with it!

[rcq925]

Woo Hoo! We still have 2 months and 1 day to go until our trip and we have already received another Big Give present!!:goodvibes:cool1:

Thank you so much to the LAXTON FAMILY!!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5384.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5383.jpg
(Hayley is doing one of her many breathing treatments and Nathan is getting ready to leave for Boy Scouts)

The gift card was SO generous and appreciated VERY MUCH!!! The kids are already discussing what they are going to spend it on and I am sure that will change many times before we actually get to Disney and they get a chance to use it! Thank you so much for making sure they will have some extra spending money to make this trip even more special!!:cool1:

[hgpiglet]

I love the smiles with the neb in her mouth, Katlyn still uses a mask so it is hard to see smiles when she is doing her neb, it looks more like a fish on her face ;). How fun that the kids are getting to start have fun with the Big Give.

[llaxton]

You are very welcome. My DH has CF (Delta V mutation) and your story obviously piqued my interest. We were given our own miracle thanks to GOD and IVF in 2006 (at the age of 40) :eek:!! I am glad I found the Big give and you!!

[rcq925]

You are very welcome. My DH has CF (Delta V mutation) and your story obviously piqued my interest. We were given our own miracle thanks to GOD and IVF in 2006 (at the age of 40) :eek:!! I am glad I found the Big give and you!!

What a small world! I am so glad that you were able to have your own miracle!! I hope and pray that someday soon they will find a cure for CF, so Hayley will be able to have a child of her own someday too!

Again, thank you so much for the gift card!! I will make sure to post in our trip report how they spent it and show pictures of what they bought with it!!:goodvibes

[kissesbykim]

Just found your PTR. How exciting! We are going on our MAW trip October 5 to 12. Congrats on the BIG WISH! That's awesome! I will be following!

[llaxton]

Have you guys tried Cayston yet? We just did the first round. Its not sticky like Tobi and my husband is definitely breathing better. Our Mary does not have the Delta 508 mutation like her Daddy she has a mutation that starts with a Y (my husband has it too) that they don't know much about but no symptoms yet (knock on wood). I was tested in 2003 but they did not test for mutations back then just CF. My husband actually passes the "sweat test" but the Pseudomonas, FEV of around 38% and absence of the vas deferens prompted us to figure out he likely had a mutation. Then after Mary was born she got sick at 6 months and had to start inhaled meds he got tested and so did she so we could see what we were dealing with.

[cantwaittoseemickey]

Getting caught up on ptr's and tr's. Love your Big Give pictures. Love those smiles!!

[MomtoAlexnWilliam]

So a little boy rang the doorbell selling boy scout popcorn and what did we find when we opened the door? OUR FIRST BIG GIVE PACKAGE!!! The mail mail had put it between the storm door and the front door!

It is from Melissa B. THANK YOU SO MUCH MELISSA!!!!!!:goodvibes



http://i958.photobucket.com/albums/ae62/rcq925/IMG_5352.jpg

Very excited and wanting to open it now! But I had to take the picture!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5355.jpg

What's inside?

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5356.jpg

A perfect bag just for "Princess Hayley" Complete with Cinderella's Carriage!!! WOW, can you tell she loved it?:confused3

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5357.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5358.jpg

She wanted to sleep with her new bag, but I convinced her that she needed to keep it nice for the trip! It will be a great carryon bag for her to carry herself on the plane!!

THANK YOU SO MUCH MELISSA!!! IT REALLY MADE OUR DAY TO GET OUR FIRST BIG GIVE PACKAGE!!!

Sorry that I just now saw this!!! I am so glad she enjoyed the bag!!! I can't wait to hear about your special trip!!! :) (And I am excited that the bag was her first gift!)

Your kids are beautiful!! Those smiles are amazing!!! :)

Thanks for all of the compliments on the bag, ladies! The design is from HeatherSue -- she does a fabulous job on them!!!

[Mom2mitokids]

Woo Hoo! We still have 2 months and 1 day to go until our trip and we have already received another Big Give present!!:goodvibes:cool1:

Thank you so much to the LAXTON FAMILY!!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5384.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5383.jpg
(Hayley is doing one of her many breathing treatments and Nathan is getting ready to leave for Boy Scouts)

The gift card was SO generous and appreciated VERY MUCH!!! The kids are already discussing what they are going to spend it on and I am sure that will change many times before we actually get to Disney and they get a chance to use it! Thank you so much for making sure they will have some extra spending money to make this trip even more special!!:cool1:

How cool. Nothing is better than a little extra spending cash at DW. ;)

[rcq925]

Have you guys tried Cayston yet? We just did the first round. Its not sticky like Tobi and my husband is definitely breathing better. Our Mary does not have the Delta 508 mutation like her Daddy she has a mutation that starts with a Y (my husband has it too) that they don't know much about but no symptoms yet (knock on wood). I was tested in 2003 but they did not test for mutations back then just CF. My husband actually passes the "sweat test" but the Pseudomonas, FEV of around 38% and absence of the vas deferens prompted us to figure out he likely had a mutation. Then after Mary was born she got sick at 6 months and had to start inhaled meds he got tested and so did she so we could see what we were dealing with.

We have not tried Cayston yet. She does pretty well with Tobi for now, so we will probably stick with it. I am so glad that Cayson works for your DH!! Also glad that Mary is just a CF carrier. Hayley is a double Delta F508 and her brother Nathan is a carrier.

[rcq925]

We are FINALLY under the two month mark!! Woo Hoo!!!:cool1:

And we got another BIG GIVE today!!!!! The kids were so excited!!

THANK YOU SO MUCH ELLEN!!!! (Dis ID: ellenbenny)

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5385.jpg

They were so excited to open it!!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5386.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5387.jpg

Hayley LOVED her dress!!:love::cloud9: Can you tell?:confused3

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5389.jpg

I must have measured correctly because it fits perfectly and she looks absolutley adorable in it!!!:thumbsup2

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5388.jpg

Nathan got these Star Wars shorts!! And he loves his Star Wars and his new shorts!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5390.jpg

And he had a goofy face to go with his new goofy shirt!!!

The kids REALLY LOVED their clothes made especially for them out of the kindness of Ellen's heart!! Thank you so much for taking the time to make our wish trip so special Ellen! We appreciate it more than words can say!

I just know we are going to get so many compliments on these outfits!! Thank you again!!!!

[my*2*angels]

Those are 2 of the cutest kids!!!! They look so HAPPY with their new clothes! Those outfits are AWESOME!

[ellenbenny]

I'm so glad the kids like their clothes, I had fun making them, and their smiles make it so worthwhile!!! I hope you all have a great trip. Your kids are adorable!

[cantwaittoseemickey]

Love the Big Give outfits! Those giftcards REALLY come in handy!! Love those smiles too!!!:lovestruc

[Mom2mitokids]

We are FINALLY under the two month mark!! Woo Hoo!!!:cool1:

And we got another BIG GIVE today!!!!! The kids were so excited!!

THANK YOU SO MUCH ELLEN!!!! (Dis ID: ellenbenny)

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5385.jpg

They were so excited to open it!!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5386.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5387.jpg

Hayley LOVED her dress!!:love::cloud9: Can you tell?:confused3

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5389.jpg

I must have measured correctly because it fits perfectly and she looks absolutley adorable in it!!!:thumbsup2

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5388.jpg

Nathan got these Star Wars shorts!! And he loves his Star Wars and his new shorts!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5390.jpg

And he had a goofy face to go with his new goofy shirt!!!

The kids REALLY LOVED their clothes made especially for them out of the kindness of Ellen's heart!! Thank you so much for taking the time to make our wish trip so special Ellen! We appreciate it more than words can say!

I just know we are going to get so many compliments on these outfits!! Thank you again!!!!

I just loves these outfits. The dress is gorgeous. Ellen..you did an awesome job on both outfits.

[xanphylus]

Love the big Gives so far and can't wait to see more! Kids look sooo happy! Thanks for making me smile today! :goodvibes

[that's nice]

Is that a Minnie Cinderella dress? Cute! princess:

Hayley didn't miss the opportunity to bust out the bunny ears over Nathan's head, did she? :lmao:

[Mom2mitokids]

Is that a Minnie Cinderella dress? Cute! princess:

Hayley didn't miss the opportunity to bust out the bunny ears over Nathan's head, did she? :lmao:

OMG...I didn't even see that. I had to go back and look:rotfl2:

[rcq925]

The kids love giving each other bunny ears!:rotfl2: I can remember doing that as a kid and thinking it was the funniest thing in the world:goodvibes

Hayley is in love with her Minnie Cinderella Dress and wants to wear it to school! I told her after the Make A Wish Trip she can wear it whenever she wants!

I had posted a question on the Wish Tripper thread about airlines waiving fees and got the answer from Air Tran.

I e-mailed them and they sent me back a very nice and quick reply. They said that baggage fees are waived for Wish families (so that will save us some money that can go towards souvenirs!:cool1:)

I had also inquired about whether they could move us to business class (their first class which two by two more comfy, larger seats). I check the online system and no one has purchased the business class seats yet and there are 10. They said to inquire when we check in at the airport and that if they were still available that we could have them:goodvibes

I also asked about Hayley and Nathan meeting the captain and seeing the cockpit. Figured while I was at it, might as well as for everything, right? She said that would depend on the captain and the crew, but again, to ask them when we are at our boarding gate!

So hopefully we will get some extra pixiedust:

Just wanted to share this so that those of you following my PTR and going on future wish trips would know that you might want to e-mail your airline ahead of time and see if you can get any of these things done for your wish child!!:goodvibes

[J'sMum]

The kids love giving each other bunny ears!:rotfl2: I can remember doing that as a kid and thinking it was the funniest thing in the world:goodvibes

Hayley is in love with her Minnie Cinderella Dress and wants to wear it to school! I told her after the Make A Wish Trip she can wear it whenever she wants!

I had posted a question on the Wish Tripper thread about airlines waiving fees and got the answer from Air Tran.

I e-mailed them and they sent me back a very nice and quick reply. They said that baggage fees are waived for Wish families (so that will save us some money that can go towards souvenirs!:cool1:)

I had also inquired about whether they could move us to business class (their first class which two by two more comfy, larger seats). I check the online system and no one has purchased the business class seats yet and there are 10. They said to inquire when we check in at the airport and that if they were still available that we could have them:goodvibes

I also asked about Hayley and Nathan meeting the captain and seeing the cockpit. Figured while I was at it, might as well as for everything, right? She said that would depend on the captain and the crew, but again, to ask them when we are at our boarding gate!

So hopefully we will get some extra pixiedust:

Just wanted to share this so that those of you following my PTR and going on future wish trips would know that you might want to e-mail your airline ahead of time and see if you can get any of these things done for your wish child!!:goodvibes

Oh I am sooo happy that they will waive the baggage fee's !! Love those big give pictures and awwWWWwwWWwww @ cinderella dress and love your kiddo's smiles :) Heres hoping for that extra pixie dust for the upgrade to seating and to see the cockpit !!!! how cool would that be !

[Mom2mitokids]

The kids love giving each other bunny ears!:rotfl2: I can remember doing that as a kid and thinking it was the funniest thing in the world:goodvibes

Hayley is in love with her Minnie Cinderella Dress and wants to wear it to school! I told her after the Make A Wish Trip she can wear it whenever she wants!

I had posted a question on the Wish Tripper thread about airlines waiving fees and got the answer from Air Tran.

I e-mailed them and they sent me back a very nice and quick reply. They said that baggage fees are waived for Wish families (so that will save us some money that can go towards souvenirs!:cool1:)

I had also inquired about whether they could move us to business class (their first class which two by two more comfy, larger seats). I check the online system and no one has purchased the business class seats yet and there are 10. They said to inquire when we check in at the airport and that if they were still available that we could have them:goodvibes

I also asked about Hayley and Nathan meeting the captain and seeing the cockpit. Figured while I was at it, might as well as for everything, right? She said that would depend on the captain and the crew, but again, to ask them when we are at our boarding gate!

So hopefully we will get some extra pixiedust:

Just wanted to share this so that those of you following my PTR and going on future wish trips would know that you might want to e-mail your airline ahead of time and see if you can get any of these things done for your wish child!!:goodvibes

That is awesome news. We spent $200 the last time on baggage fees:scared1:. I will be calling this time.
Here's some pixiedust: for the other 2.

[that's nice]

That is awesome that Airtran will wave the fees! We are flying on Southwest so our bags fly free! ;)

I think since you were on a roll and you had them on the phone you should of asked if the kids could actually fly the plane.:lmao::lmao:

[kiwigirl]

I'm just subbing on and really enjoying your ptr! You have two gorgeous children and I just love the photos of them opening their Big Give gifts - so many beautiful creative items! I think you are totally right in taking Hayley now while she is doing well and happy, make the most of today and enjoy the magic as a family. Having had four years of ups and downs with my transplant baby I know that I look at life so differently and believe in taking the magic today as who know what tomorrow brings. :love:

[rcq925]

:goodvibesI'm just subbing on and really enjoying your ptr! You have two gorgeous children and I just love the photos of them opening their Big Give gifts - so many beautiful creative items! I think you are totally right in taking Hayley now while she is doing well and happy, make the most of today and enjoy the magic as a family. Having had four years of ups and downs with my transplant baby I know that I look at life so differently and believe in taking the magic today as who know what tomorrow brings. :love:

THanks for subbing and for your kind words!!:goodvibes

[rcq925]

That is awesome that Airtran will wave the fees! We are flying on Southwest so our bags fly free! ;)

I think since you were on a roll and you had them on the phone you should of asked if the kids could actually fly the plane.:lmao::lmao:

Hey I never thought of that:rotfl2:

I actually e-mailed them and that way I have it in writing. Printed it off and will take it with us along with all of my other information I have accumulated.

[mjarecki]

Hi. We just found out we will be there Nov. 15-21st. Our son Michael has Bronchiolitis Obliterans, a form of interstitial lung disease. I saw Hayley's Vest and nebulizer and started reading your thread since Michael's disease is similar to CF. Hope to see you there!

Mindy

[rcq925]

Hi. We just found out we will be there Nov. 15-21st. Our son Michael has Bronchiolitis Obliterans, a form of interstitial lung disease. I saw Hayley's Vest and nebulizer and started reading your thread since Michael's disease is similar to CF. Hope to see you there!

Mindy

Maybe we will see you there! I just subscribed to your PTR!:goodvibes

[Mom2mitokids]

Hi Becky,

I know you are going on Airtran(is that correct airline) and I was reading someone post on this site about them and thought I would let you know. I guess if you want to sit by your family you have to pay for it. If not they will sit you separately. This one lady said they separated her and her 3 year old child.
http://www.disboards.com/showthread.php?t=2564903

I'm sure because you are a MAW trip they will keep you all together, but maybe give them a call.

[yinyanggirls]

What amazing Big Gives! It never ceases to amaze me the generosity found here on this board.

Sounds like the flight should start the trip off nicely. Good thing you asked!

[rcq925]

Hi Becky,

I know you are going on Airtran(is that correct airline) and I was reading someone post on this site about them and thought I would let you know. I guess if you want to sit by your family you have to pay for it. If not they will sit you separately. This one lady said they separated her and her 3 year old child.
http://www.disboards.com/showthread.php?t=2564903

I'm sure because you are a MAW trip they will keep you all together, but maybe give them a call.


I did see that thread yesterday. I am trying not to stress out about it. I am sure they will at least be able to seat us 2 and 2 together and that will be fine as long as one adult is with each child! I am hoping for the business class seats!!

What amazing Big Gives! It never ceases to amaze me the generosity found here on this board.

Sounds like the flight should start the trip off nicely. Good thing you asked!


Yes the Big Givers are Amazing :worship: We feel so lucky to have been chosen to receive gifts from them!!:goodvibes

[rcq925]

Only 38 days until our trip!! We are all so excited!

I got an e-mail from our MAW coordinator today that said someone called their office and wanted to make a small donation to a wish child from our city. She said they pulled all their pennies together and it will be enough to pay for our breakfast with the Princesses at CRT. They sent in a gift card that will cover it and we will get it with our packet from our volunteers before we leave:cool1:

So some extra pixie dust pixiedust:

We also make a Mickey Head countdown calendar to start on day 30, so just a few more days before we can start using that. I will post pictures later, it actually turned out pretty cute if I do say so myself! And I am not at all crafty, but Hayley helped!!

Now I am trying to make a list of things to check over after the suitcases are packed and things that I might need to buy still before the trip.

Any suggestions from those of you who have already been that I should not forget??:confused3

[rcq925]

Here are some pictures of our countdown calendar!!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5435.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5436.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5437.jpg

[Mom2mitokids]

That is a cool calendar. You did an amazing job on it. Trip will be here before you know it.

[that's nice]

I love the calendar! How exciting! Do you have anything under the numbers?

We have to get working on ours. We will be down to 30 days before we know it!

[rcq925]

Thank you!!

Nope nothing under the Mickey Heads. I am not very crafty and this calendar is as good as it gets!:goodvibes

I have looked at others on the Dis boards that were amazing, with little pictures underneath, but I don't have the talent or the patienced to do all that!

[Mom2mitokids]

Thank you!!

Nope nothing under the Mickey Heads. I am not very crafty and this calendar is as good as it gets!:goodvibes

I have looked at others on the Dis boards that were amazing, with little pictures underneath, but I don't have the talent or the patienced to do all that!

For someone not crafty...I think this turned out great. I would of never thought of doinf something like this. My idea of a count down is those circles-rings that hooked to each other...lol. How did you get the mickey head shape? Did you velcro to hold it down or tape?

[rcq925]

For someone not crafty...I think this turned out great. I would of never thought of doinf something like this. My idea of a count down is those circles-rings that hooked to each other...lol. How did you get the mickey head shape? Did you velcro to hold it down or tape?

The Mickey Heads are paint sample cards from Home Depot. We used the scapbooking sticky dots on the back of them to get them to stick! It was really VERY simple! If I can do it, anyone can!

[rcq925]

Guess what came in the mail today?:confused3

Another BIG GIVE!!! WOO HOO!!!:cool1:

The kids were so excited to see what was inside!:banana:

Thank you so much Glenda (DIS ID gcast1)! The kids absolultely loved all of their gifts! The crayon rollups are fantastic! And they love the twistable crayons! Those are so cool! :cloud9:

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5453.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5454.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5455.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5456.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5457.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5460.jpg


Nathan LOVED all the Start Wars books and especially the Storm Trooper Pen! He really liked the Phineus and Ferb journal!! You did a wonderful job picking out just the things he loves!:goodvibes

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5461.jpg

Hayley LOVED all of her princess items!:cloud9: She loves to color and draw, so the journal, coloring book and crayon rollup are awesome!!

All of these items should keep them occupied on the 2 hour limo ride to the airport and on the plane!

Thank you so much from the bottom of our hearts!!!
I am going to have to join the Big Give Group when we return! I can't sew, but I would love to do pixie dust!!pixiedust:

[Mom2mitokids]

Wow!!! Those are all cool stuff!!

[that's nice]

Wow, what awesome gifts!

Love all the Star Wars coloring books... (I am a Star Wars lover!!)

Great pixie dust for the kids!!!!!!!!!!! :wizard:

[my*2*angels]

I am SOOOO glad the kids are enjoying their gifts!!! I just LOVE to see their smiles!!!!

Glenda-I love all of the things you sent!!! Thank you so much!

[EnchantedPrincess]

I just finished reading all nine pages of your PTR, and just wanted to drop by and say "Hello"! Your kids are adorable, and I love, love seeing their smiles opening all their Big Gives! Also love your count down calendar - I think you did an awesome job!
Just 1 month and 2 days to your trip..I bet the kids are getting more and more excited - it will be here before you know it!

[rcq925]

Do kids need a car seat in a limo? Hayley is 6 years old and just uses a backless booster seat? Will she need one for the limo ride? We will be in the limo 2+ hours to the airport each way.

I am trying to avoid dragging her carseat along if we can. Also if the carseat is not needed for the limo, does the car rental agency have then to rent/use, because she will need one once we arrive in Orlando for all the driving in the rental car between parks. Thanks!

We are almost down to the 30 day mark and so excited!!!!

[kellyw8863]

Do kids need a car seat in a limo? Hayley is 6 years old and just uses a backless booster seat? Will she need one for the limo ride? We will be in the limo 2+ hours to the airport each way.

I am trying to avoid dragging her carseat along if we can. Also if the carseat is not needed for the limo, does the car rental agency have then to rent/use, because she will need one once we arrive in Orlando for all the driving in the rental car between parks. Thanks!

We are almost down to the 30 day mark and so excited!!!!


I have a llllloooooottttt of catching up to do, so I thought I'd start here! We brought the backless booster for Maya and actually couldn't use it in the limo. There was only a lap belt where she sat instead of the lap/shoulder combo, and it just wasn't necessary. We did bring it because we wanted it for the rental, but we were already bringing Ali's carseat so we just threw it all in the same bag. If money isn't an issue, you could always pick up a booster bottom at WalMart for between $15 - $25 and then just leave it at GKTW. That was our initial plan until we decided that we needed Ali's carseat anyhow. You must be getting so excited - it's just around the corner!:banana:

[rcq925]

Thanks for the info Kelly! I was thinking about buying one at Walmart too, but thought I had heard someone mention that the rental company has them too.

[rcq925]

So Hayley has her regular every three month check up at the Cystic Fibrosis Clinic today. I always get so nervous about these appointments. She will get a throat culture to check for any bacteria that may be growing in her lungs (I hate waiting for the results of this one, usually a week), also she will do PFT's (pulmonary function testing) to see how well her lungs are working. She will also have to have her port accessed for a blood draw for vitamin levels and a flu shot!

She has developed a little cough in the last few days, that I am hoping is just a cold, but with her a cold can always turn into much more :sad1:

She has been realtively healthy for the last six months. No hospitalizations since April. Six months with no hospital stays is REALLY good for us. But fall/winter is her bad time. I am just praying that she does not get sick right before we leave!!:mad:

Anyway, now I am rambling! I will post later tonight and let everyone know how the appointment went!

[that's nice]

Good luck on Hayley's appointment today. I hope everything is ok. We know the stress that comes with those 3 month appointments. :goodvibes

[my*2*angels]

Praying that Hayley's appt goes well! Please let us know!

[Jdougherty]

I'm subbing. I love MAW kids, I have a soft spot for them.

prayers from colorado that it's a simple cold and Hayley is back on the raod to recovery soon.

I grew up outside of southbed and my aunt live in FW, I loved visiting her and the zoo. Your right it's an awesome zoo.

[rcq925]

Hayley's appointment yesterday at the CF clinic was so so. Her first round of PFT's (Pulomanry Function Test) were not good numbers. She has a pretty good cough going on right now and I thought for sure she would be admitted into the hosptial for IV antibiotics, but the doctor listened to her and said her lungs sound clear. So that is good. We did an albuterol breathing treatment and then did the PFT's again and her numbers increased, so this was good as well.

He gave me a prescription for an oral antibiotic. If her cough does not get better in the next few days or gets worse, we will fill it and see what happens. We did a throat culture, to see what if any bacteria are growing in her lungs. Results on that should be back on Monday or Tuesday for that.

She did gain weight and grew taller, so those are both good.

So now we play the waiting game. I guess if she was going to get sick, better now then closer to the trip. If we end up in the hosptial, she will have to do two weeks of IV antibiotics, but we still should be able to get done and all better before our trip!

Our trip is only 31 days away! Woo Hoo!:cool1:

So please keep your fingers crossed that Hayley gets better soon and we can avoid the hospital!

[PennyLane1084]

Hello, I just Subscribed to your PTR. I am addicted to these MAW trips. Just watching how excited these kids get always brightens my day. Hayley and Nathan are adorable. YAY FOR THE BIG GIVE!!

[that's nice]

SO glad Hayley wasn't admitted. Hopefully it is just a cold and will go away soon. Thanks for letting us know.

[PennyLane1084]

Glad to hear Hayley wasn't admitted. I had a lot of respiratory problems as a kid being a preemie. But your kids look like they are about explode with happiness!!! Love the Star Wars swag!!

[kellyw8863]

Hayley's appointment yesterday at the CF clinic was so so. Her first round of PFT's (Pulomanry Function Test) were not good numbers. She has a pretty good cough going on right now and I thought for sure she would be admitted into the hosptial for IV antibiotics, but the doctor listened to her and said her lungs sound clear. So that is good. We did an albuterol breathing treatment and then did the PFT's again and her numbers increased, so this was good as well.

He gave me a prescription for an oral antibiotic. If her cough does not get better in the next few days or gets worse, we will fill it and see what happens. We did a throat culture, to see what if any bacteria are growing in her lungs. Results on that should be back on Monday or Tuesday for that.

She did gain weight and grew taller, so those are both good.

So now we play the waiting game. I guess if she was going to get sick, better now then closer to the trip. If we end up in the hosptial, she will have to do two weeks of IV antibiotics, but we still should be able to get done and all better before our trip!

Our trip is only 31 days away! Woo Hoo!:cool1:

So please keep your fingers crossed that Hayley gets better soon and we can avoid the hospital!

:hug:

[mjarecki]

So we will be getting there on the 15th and have almost the same schedule as you! We are planning on Universal on the 16th, Sea World on the 18th and we will also be at MVMCP on the 19th. We should try to find each other at some point. Since Haley and Michael's medical conditions are so similar I think it would be neat for them to meet!

[rcq925]

30 days!!!!!



WOO HOO! :cool1: I never thought we would make it, but we are finally down to our last 30 days!!:banana::banana:

Hayley is still coughing, but it has not gotten any worse!:goodvibes So hopefully it is just a virus!

[rcq925]

I'm subbing. I love MAW kids, I have a soft spot for them.

prayers from colorado that it's a simple cold and Hayley is back on the raod to recovery soon.

I grew up outside of southbed and my aunt live in FW, I loved visiting her and the zoo. Your right it's an awesome zoo.

Thanks for joining along! Never been to Colorado, but hope to get there some day. Love the Fort Wayne Zoo! Hoping to hit their Halloween special weekend this weekend!:goodvibes

[rcq925]

Hello, I just Subscribed to your PTR. I am addicted to these MAW trips. Just watching how excited these kids get always brightens my day. Hayley and Nathan are adorable. YAY FOR THE BIG GIVE!!


Thank you for joining along! We are finally down to the last 30 days and so excited!!!

The Big Givers are so awesome! I can't even find the words to express how thankful we were to be chosen. I definitely want to participate in the Big Give when we return! I can't sew a lick, but I can do pixie dust!pixiedust:

[rcq925]

So we will be getting there on the 15th and have almost the same schedule as you! We are planning on Universal on the 16th, Sea World on the 18th and we will also be at MVMCP on the 19th. We should try to find each other at some point. Since Haley and Michael's medical conditions are so similar I think it would be neat for them to meet!

That would be great!! That is so funny that you have the same schedule. I tried to put quite a bit of research into what days to do which parks since we had so much time to plan and I think I have a pretty good plan.

But I know that things can change and I am expecting the unexpected! :goodvibes

[my*2*angels]

I am glad to hear that Hayley was not admitted! I am really praying that the test results come back with good news!!!

[EnchantedPrincess]

Yay..glad that she wasn't admitted! I hope her cough gets better, and that you get good test results next week.

Hayley's appointment yesterday at the CF clinic was so so. Her first round of PFT's (Pulomanry Function Test) were not good numbers. She has a pretty good cough going on right now and I thought for sure she would be admitted into the hosptial for IV antibiotics, but the doctor listened to her and said her lungs sound clear. So that is good. We did an albuterol breathing treatment and then did the PFT's again and her numbers increased, so this was good as well.

He gave me a prescription for an oral antibiotic. If her cough does not get better in the next few days or gets worse, we will fill it and see what happens. We did a throat culture, to see what if any bacteria are growing in her lungs. Results on that should be back on Monday or Tuesday for that.

She did gain weight and grew taller, so those are both good.

So now we play the waiting game. I guess if she was going to get sick, better now then closer to the trip. If we end up in the hosptial, she will have to do two weeks of IV antibiotics, but we still should be able to get done and all better before our trip!

Our trip is only 31 days away! Woo Hoo!:cool1:

So please keep your fingers crossed that Hayley gets better soon and we can avoid the hospital!

[rcq925]

Guess what came in the mail today?

TWO BIG GIVES!!!!:banana::banana:

We had a busy night, school carnival at the kids school, but they could not wait to open the presents, so we opened them really fast and headed to the carnival. Hayley did not get to try on her outfit, so I will post a picture of her in it tomorrow.

First Big GIve was from Jenny (DIS id: EnchantedPrincess)

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5463.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5464.jpg

Nathan LOVED his Phineus shirt and wants to wear it to school! Not until after the trip!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5465.jpg

Hayley LOVED LOVED LOVED her skirt and Minnie shirt! We did not have time to try it on before the carnival and after we had a hour and half of vest and breathing treatments to do (plus she got her hair spray painted blue and pink and had on face paint. We did not want to risk getting anything on her beautiful outfit, so we will wait to try it on and take a picture until tomorrow!

Jenny also included some pixie dust that was much appreciated!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5466.jpg

THANK YOU SO MUCH JENNY!!!! We appreciate all you did more than words can say!!!

Next up is a Big Give is from Wendy (Dis id: billwendy)

Mom and Dad got something this time!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5469.jpg

Beautiful Mickey Head shirts with a hawaiian theme! Perfect for O'Hana!!


http://i958.photobucket.com/albums/ae62/rcq925/IMG_5468.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5470.jpg

Hayley got a beautiful princess hair comb! Which she absolutely LOVED!!


http://i958.photobucket.com/albums/ae62/rcq925/IMG_5471.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5474.jpg

A few more pictures of our gorgeous new shirts!!!

THANK YOU SO MUCH WENDY!!! We so appreciated all the time and effort you put into making us the wonderful shirts!!!!

We are all going to be styling on Hayley's Wish Trip!

THANK YOU AGAIN JENNY AND WENDY!! You guys are awesome!!!:cool1:

[cantwaittoseemickey]

Love the Big Give shirts! Those are adorable!! I have never seen a princess hair clip like that before. Too cute! The Minnie outfit and Pheneas shirt are awsome! She has such a pretty smile:lovestruc How cool you will all match:cool1:

[billwendy]

Yay!!! you guys look adorable!!! I was hoping they would work for Ohana!!! Awwww, the little princess looks adorable too!!!! Im so glad she like the pixie dust. You guys have a WONDERFUL TRIP!!!!!!:goodvibes

[rcq925]

First of all let me post pictures of Hayley in the Minnie outfit that Jenny made her!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5478.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5479.jpg

Doesn't she look adorable? THANK YOU AGAIN JENNY! She loves this outfit!!!

Today we got two MORE BIG GIVES!!! And we have one waiting for us at the post office! We were at Nathan's flag football game when the mail came and we got a notecard telling us we have a package at the post office. I will get that one on Monday!!

So first up is from Jen (DIS id: Scouthawk).

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5477.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5480.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5481.jpg

It was a beautiful Christmas dress that will be perfect for Christmas at Give Kids the World and the MVMCP!!! Hayley loves it! She really loves the Mickey and Minnie and little tree lights on the front!

THANK YOU SO MUCH JEN! She is going to look so cute in it!!!

The next package was from Dania (Sorry I am not sure of your Dis name, I did not see it on the package!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5482.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5484.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5485-1.jpg

Some wonderful Pixie Dust from Dania!!! The kids loved they little bags and the autograph books!! The cards and activites will give us some great things to do on the airplane and limo ride!!!

THANK YOU SO MUCH DANIA!!!
WOW, I am just overwhelmed with emotion when I think of all of the wonderful things we have received from the BIG GIVE!! Thank you from the bottom of our hearts for helping to make Hayley's Wish Trip so much more special!!!

[ellenbenny]

I'm loving all of the Big Give gifts! What beautiful clothes and fun pixie dust!! So glad to see such big smiles!

[PEANUT1]

Hi. I am enjoying your thread!!
We are arriving the same day as you..your children are beautiful. Enjoy the rest of your planning.:thumbsup2

[scouthawkk]

So first up is from Jen (DIS id: Scouthawk).

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5477.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5480.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5481.jpg

It was a beautiful Christmas dress that will be perfect for Christmas at Give Kids the World and the MVMCP!!! Hayley loves it! She really loves the Mickey and Minnie and little tree lights on the front!

THANK YOU SO MUCH JEN! She is going to look so cute in it!!!



Wow! That got there quick! I wasn't expecting you to get it until today! Hayley looks beautiful in everything. I am glad I was able to take part. I had so much fun making this dress! Have a fantastic trip!!!!!

[rcq925]

I just cannot believe the generosity of the Big Givers!! You are all such wonderful people for all you do for wish kids!! Words can never express how truly grateful and thankful I am for all you have done for our family to make this a wonderful trip!!

THREE, yes I said THREE BIG GIVE packages arrived today! I think the kids thought it was Chistmas!

The first package is from Cheryl (Dis ID: wdwmickey).

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5528.jpg

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It is a gorgeous scrapbook for Hayley's Wish Trip!! This thing is truly beautiful and I know took so much time and effort to put together! I can tell all the love that went into making it!!

THANK YOU SO MUCH CHERYL!!!!!
I am not at all "crafty" and I could never had put together a scrapbook this beautiful! It is going to be so beautiful when we add all the pictures to it and something that Hayley will always have to remember this magical week of her life. Thank you so much! I will be sure to post some pictures of the completed project when we get it done!

Next package is from the Macoy Family (Not sure of your Dis ID.

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http://i958.photobucket.com/albums/ae62/rcq925/IMG_5546.jpg

Nathan LOVES his shirt! It is so cute! And looks great on him (if I can get him to keep the collar down :goodvibes) He keeps thinking he is a cool dude with it up!:lmao:


http://i958.photobucket.com/albums/ae62/rcq925/IMG_5542.jpg

Hayley absolutely LOVES her dress:cloud9: Sleeping Beauty is her favorite princess and pink and yellow are her favorite colors! The dress is perfect for her in every way! She looks so beautiful in it!! I finally found a few little white T-shirts at Target today (do you know how hard it is to find short sleeve, plain white shirts in the fall in Indiana?:rotfl:) to put under a few of the dresses she got, in case it is a little cooler in Orlando than I am hoping it will be!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5545.jpg

THANK YOU SO MUCH TO THE MACOY FAMILY!!!!

I so appreciate all the time and love you put into making this beautiful dress and shirt!! Can't wait to have the kids wear them to Disney World!!!

The next gift is from Allison and Malachi (DIS id: TEBI73)

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We all got matching family Wish Trip T-shirts!!! And they had a favorite character for each of us!!!! (Sleeping Beauty for Hayley, Minnie Mouse for me, Yoda for Nathan, and Grumpy for Shaun)

It was only the four of us at home so we had to take a picture of the girls and a picture of the boys, since we could not take one of all four of us together!!

WE LOVE THE SHIRTS!!! Can't wait to wear them!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5540.jpg

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5541.jpg

This package also included some pixie dust for the kidspixiedust:. Some coloring activites to keep them busy on the plane!! And a Family photo frame that will be perfect for a great picture from our trip! Hayley wanted to know if that was a picture of you guys in the frame?:lmao:

THANK YOU SO MUCH ALLISON AND MALACHI!!!!Thank you for the time and love you put into make the family shirts for all of us! I can't wait to get a picture at Disney with the four of us wearing them!!!

THANK YOU! THANK YOU! THANK YOU! Words just do not seem to be enough, but the time, effort and love you have all put into these gifts is truly appreciated more than you could ever know!!!

[rcq925]

Hayley's cough has not gotten better, a little worse in fact. So we filled the oral antibiotic and are hoping that will keep us out of the hospital! We should know in about 48 hours if the oral antibiotic will help or not. If not, into the hospital we go. She will have to have 14 days of IV antibiotics in her port. Luckily we usually stay in the actual hospital 2-5 days until they get her medication levels correct and she starts to improve. But we are down to 26 days left until we leave, so we will be cutting it close!

Please keep Hayley in your prayers that she gets better quick so she can enjoy her trip!! Thank you so much for any prayers!

The Big Give gifts are certainly keeping her spirits up and making her smile!! Thank you so much for that!!:goodvibes

[my*2*angels]

I am so glad you all are LOVING the give gifts!!! I have never met a group of more caring people!!! I just LOVE all of the pics of everthing, just seeing the smile on your kids faces is AMAZING! Truly beautiful gifts!!! Thank you Big Givers!!!

I certainly hope Hayley gets better soon!:hug:

[wdwmickey]

I'm so happy you like the scrapbook :) I loved making it. Prayers and pixie dust :tink: on the way that Hayley feels lots better real soon :flower3:

[kiwigirl]

Big Give Family - you are so awesome to make and send such gorgeous gifts for this lovely family. Well done all of you.

I hope Hayley is feeling a bit better soon!

[that's nice]

Wow... what awesome gifts!!!!! The Big Give is so great isn't it? :goodvibes

I am so sorry to hear that Hayley isn't getting better. I hope the medication works and she won't have to get admitted. :hug:

[rcq925]

Well bad news today!:sad1: Hayley had to be admitted to the hospital today. He cough was getting much worse, she started wheezing a lot, and her oxygen saturation was falling too low at night during sleep.

She is on an IV antibiotic and IV steroids to help her get better fast! She will probably have to sleep with oxygen tonight. Our doctor wants her above 93 and she was going down to 90 at home in her sleep. So she will have to stay in the hospital until she can get through the night without oxygen. We are hoping it will only be 2-3 days and then she can come home and finish the IV's from home, we just give them to her.

I guess in a way it is better that she gets sick now and that way she can be good and healthy when we leave in 26 days! Normally IV antibiotics are 10-14 days in length, so she should be all done prior to our trip.

She did get another Big Give Package tonight, but we will wait until she gets home to open it because I don't want to take it to the hospital and get hospital germs on whatever may be in the package!

Thank you so much for all the well wishes and prayers for Hayley to feel better!! I hope they work and she can come home soon!

I am out of vacation days at work (using them last winter and spring when she was hospitalized 3 times in 4 months) until after October 30th. I was able to leave work today and get her all admitted and set up, but Dad will have to be there with her and stay the nights with her until Friday. This makes me really sad :sad2: because I am usually the one who spends most of the time with her and I don't like being away from her! But I know she is in good hands! She has her favorite nurse tonight and we love our doctor and all the nurses on the peds floor at our hospital!

Anyway I am going to quit babbling now and spend some time with Nathan!

[Tinker_Tam]

I am so sorry this is coming up now. Hopefully this will be the last thing to hit before the trip and Hayley will have the best trip ever!

[llaxton]

I hope she gets well soon. I will be praying for her.

[scouthawkk]

Oh, I am so sorry she had to be admitted! I hope all goes well and she is feeling better for her trip!

[wdwmickey]

I hope Hayley feels better really soon :)

[my*2*angels]

I am sorry Hayley had to be admitted!!! I am praying for a quick recovery! The good thing is that she should be all better and feeling great for the trip!!!!:thumbsup2

[rcq925]

Just wanted to give an update on Hayley.

She is still in the hospital and not improving. Still on oxygen and still coughing like crazy!

The doctor is going to give her until tomorrow to improve and then switch to two more powerful IV medications, which she will have to do a full 14 days off! So we are going to be cutting it close to our trip!!

Thanks for all the prayers and good wishes! Keep them coming, Hayley needs them!

[that's nice]

Becky- I am so sorry Hayley (and your family) is going through this right now. We are praying for her to get better very soon!!!!!! :grouphug:

[llaxton]

Just wanted to give an update on Hayley.

She is still in the hospital and not improving. Still on oxygen and still coughing like crazy!

The doctor is going to give her until tomorrow to improve and then switch to two more powerful IV medications, which she will have to do a full 14 days off! So we are going to be cutting it close to our trip!!

Thanks for all the prayers and good wishes! Keep them coming, Hayley needs them!

Do you know off hand what she is on now? The combo of IV Tobi and Cefepime works pretty well on my husband. It takes a while to do but it knocks down the infection while he is on it.

[kellyw8863]

I'm sorry to read that Hayley is in the hospital. I hope that she starts responding to the abx soon and that she gets well soon!:hug:

[ellenbenny]

Prayers that Hayley gets well soon!!

[EnchantedPrincess]

I am so glad that Hayley and Nathan loves their Minnie outfit, and Phineas shirt! I had lots of fun making them, and I am loving the scrapbook,and the other outfits too from the other big givers but..

I am so sorry that Hayley isn't feeling well, and has to be admitted. I am praying for a speedy recovery, and that she gets to go home soon! So sorry that you guys are having to go through this.

[fulseasmama]

I am so sorry she has to stay in the hospital. I am hoping the medicine kicks in and takes care of everything so you can just focus on getting ready for your amazing vacation. Your family will continue to be in my thoughts and I hope she is home and feeling better soon.

[my*2*angels]

Oh NO! More prayers being sent!!!:hug:

[Tinker_Tam]

Tons of Prayers coming your way!

[mjarecki]

Just wanted to give an update on Hayley.

She is still in the hospital and not improving. Still on oxygen and still coughing like crazy!

The doctor is going to give her until tomorrow to improve and then switch to two more powerful IV medications, which she will have to do a full 14 days off! So we are going to be cutting it close to our trip!!

Thanks for all the prayers and good wishes! Keep them coming, Hayley needs them!

I hope Hayley starts feeling better-we really want to meet you on our trip! Does she have a port? I hope that she is able to run the ivs at home so that she can get out of the hospital. There is so much crap going around right now. I took Michael in to the pulm yesterday for his appt and PFTs and they were making everyone wear isolation gowns and cleaning all the rooms in between patients which made me feel better, but I'm still freaked out about him getting sick before we go, especially since his little brother is sick right now. Michael's sats were really low yesterday, at the office (80s) and they are usually aroun 93 so I hope this isn't a sign of something to come. Tell Hayley we are thinking of her and hope that she gets feeling better soon!

[rcq925]

Hayley came home from the hospital today!!! Woo Hoo!!!:cool1:

The new med kicked in fast and she is feeling much better! We have to continue her IV medication through November 5th, but she should be back to herself by time for us to leave for our trip on November 13th!

While she was in the hospital we got three Big Gives!!!:cheer2::cheer2:

So here they are! I don't think I have Dis names for any of the Big Givers in this round, but I do hope they are watching our PTR and will identify themselves!!

The first package is from the Blanks's!

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Two awesome personalized journal notebooks for Hayley and Nathan, with their favorite characters!! They love them!!!

THANK YOU SO MUCH BLANK FAMILY!!!!
The second package arrived UPS and had only ARJ Infusion Services (Kansas) in the return address section, so I have no idea who this one is from! I really hope you will let me know so we can properly thank you!!

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Hayley was so excited when she saw this gift!!! My hubby, Nathan and I all got matching Mickey Head shirts with an O'hana theme last week and Hayley was sad that she did not get one too! Now we know why! She got this beautfiul O'hana dress to wear!!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5559.jpg

She is going to look beautiful in it!!

THANK YOU SO MUCH FOR THE OHANA DRESS!!!!

And last, but not least, our 3rd package is from Karyn!!!

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http://i958.photobucket.com/albums/ae62/rcq925/IMG_5561.jpg

We were so pleasantly suprised to find matching shirts for all of us!!! Wild just like us for our day at the Animal Kingdom!!

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White zebra head Mickey's for the boys!

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http://i958.photobucket.com/albums/ae62/rcq925/IMG_5564.jpg

And pink for the girls!!! Hayley even got some adorable pony's tail holders with ribbons that match! She said maybe we could each wear one!:thumbsup2



THANK YOU SO MUCH KARYN!!!! WE LOVE OUR SHIRTS!!!!!
Thank you so much for all of these wonderful Big Gives. Hayley opened all of them while in the hospital this past week and they really made her day much brighter!!!

Can't believe we only have 21 days left!!!!

[ellenbenny]

So happy for you all that Hayley is doing so much better and got to go home! Love the Big Give stuff!! Your trip will be here before you know it now!

[billwendy]

YAY!!! Soooo glad Hay is feeling better!!!! You guys will look adorable in your Ohana outfits!!! :thumbsup2

[my*2*angels]

I was so happy to read that Hayley was home and feeling better!:cool1: So glad you all loved the Big Give stuff, I hope it will help make your trip even more special!!!

[Tinker_Tam]

So happy to hear Hayley is home!! I am sure she will feel better much quicker at home. Your trip will be here before you know and you all will have a wonderful time.

[mjarecki]

I'm guessing you guys will be bringing a nebulizer just like us. OUR MAW chapter was able to arrange for a VEST machine to be at GKTW, but not a nebulizer so we are bringing our own. Michael does Pulmozyme and is is liquid and needs to be refrigerated-are you bringing nebulizer medicine that needs to be kept cold-if so how are you doing it on the plane?

[blessedmom4]

SO Thrilled you are home!!! :banana:

Your trip will be here before you know it and I pray there will be NO MORE BUMPS as you wait to go!

How fun to get Big Give Packages to brighten up the hospital stay! You ALL deserved some magic :wizard: and everything is so beautiful!!!

Blessings,
Judy

[rcq925]

I'm guessing you guys will be bringing a nebulizer just like us. OUR MAW chapter was able to arrange for a VEST machine to be at GKTW, but not a nebulizer so we are bringing our own. Michael does Pulmozyme and is is liquid and needs to be refrigerated-are you bringing nebulizer medicine that needs to be kept cold-if so how are you doing it on the plane?

Mindy,

We will be taking our vest with us, as well as the nebulizer machine. She is on Pulmozyme and I need to find out what type of ice packs are acceptable for the travel on the airplane. We flew two years ago with all of her stuff, but for the life of me, I cannot remember!!

So you know? I know they can not have any liquid and the packs must be frozen solid. We are staying at a hotel near the airport the night before our 7am flight, so I need to check on this! Thanks for reminding me!!

[that's nice]

I'm so glad Hayley got to come home. What great Big Gives!!! I love the 'Ohana dress! Looks like the Big Gives cheered Hayley up some in the hospital. :goodvibes

[mjarecki]

Mindy,

We will be taking our vest with us, as well as the nebulizer machine. She is on Pulmozyme and I need to find out what type of ice packs are acceptable for the travel on the airplane. We flew two years ago with all of her stuff, but for the life of me, I cannot remember!!

So you know? I know they can not have any liquid and the packs must be frozen solid. We are staying at a hotel near the airport the night before our 7am flight, so I need to check on this! Thanks for reminding me!!

Just to let you know our MAW arranged for Hill Rom to deliver the machine and all we have to bring is Michael's vest, not even the tubes. You might want to look into it so that you don't have to lug that heavy thing with you!

[mjarecki]

Just to let you know our MAW arranged for Hill Rom to deliver the machine and all we have to bring is Michael's vest, not even the tubes. You might want to look into it so that you don't have to lug that heavy thing with you!

If nothing else you could come over and use the one we have in our villa. WE have to bring our own oxygen conentrator, we couldn't get our home health to be very nice and arrange it for us (it cost them and taking a portable one they have doesn't so we ended up getting stuck bringing one with us).

[rcq925]

Thanks Mindy! We dragged our vest to Disney two years ago and with the nice bag that Hill-Rom makes, everything fits right inside the bag and it has a handle and rolls on wheels. Not sure if you have the same model or the bag, but it actually is really easy to travel with.

I am also a germaphobe when it comes to Hayley. We actually lug our own vest the the hospital everytime she is hospitalized, because I don't want to use the one at the hospital due to germs and bacteria. I know they clean it, but you never know how well they clean it.

I am going to call Give Kids the World and ask them if there is a large pot that we can use on the stove top to boil Hayley's Pari LC nebs. We normally boil them after every treatment.

How do you clean Michael's? Have you thought about how you will do it while at GKTW?

In reading the TTA website, I think that you can use any ice packs as long as they are frozen solid (No mushy liquid). I am also entertaining the idea of just leaving it out and bringing a few baggies and then asking for ice from a restaurant once we clear security.

We only have a 2 hour flight to Orlando, so that would be fine to keep it cold until we arrive at GKTW.

[Mom2mitokids]

I'm loving all the new Big Give stuff. That dress is so cute. Kylee has 2 meds that need refrigeration and no clue how to keep them cold. We have a 4.5 hour plane ride. Hopefully...if i buy 3 big hard ice packs they will stay cold.

[froggy33]

Hi there!

The Ohana dress was from me...my husband sent it from work and was supposed to put a little note in it, but of course he forgot. Husbands:confused3 :rotfl: I even told him what to write!

I am so glad she liked it and that she gets to match!

Have a wonderful time on your trip! Savor every single minute, cause as you know they go by much to quickly!

Jessica

[rcq925]

Hayley was chosen to be our local area person for Applebee's Make A Wish Campaign! We did not know it had started yet, until we went to Applebee's for dinner tonight. We were sitting waiting for a table and Hayley saw this on the wall!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5565.jpg

She said, "Mom that's me!":goodvibes:banana::cheer2:

It was so cool. We asked for the manager to come over and he gave us a few of the nice laminated cards with Hayley and two paragraphs about her and her wish! It is the same on both sides.

Then we heard our waitress showing the table behind us the card and asking them to donate to Make A Wish and make Hayley's wish come true. It was so awesome! The manager said they are doing great raising money and even bought our dinner with free desert as well!!:cool1:

[rcq925]

Hi there!

The Ohana dress was from me...my husband sent it from work and was supposed to put a little note in it, but of course he forgot. Husbands:confused3 :rotfl: I even told him what to write!

I am so glad she liked it and that she gets to match!

Have a wonderful time on your trip! Savor every single minute, cause as you know they go by much to quickly!

Jessica

Yes I do know husbands!!!:lmao:

Thank you Jessica for the beautiful dress! She loves it and we are going to look great when we go to O'hana!!!:thumbsup2

[blessedmom4]

Hayley was chosen to be our local area person for Applebee's Make A Wish Campaign! We did not know it had started yet, until we went to Applebee's for dinner tonight. We were sitting waiting for a table and Hayley saw this on the wall!

She said, "Mom that's me!":goodvibes:banana::cheer2:

It was so cool. We asked for the manager to come over and he gave us a few of the nice laminated cards with Hayley and two paragraphs about her and her wish! It is the same on both sides.

Then we heard our waitress showing the table behind us the card and asking them to donate to Make A Wish and make Hayley's wish come true. It was so awesome! The manager said they are doing great raising money and even bought our dinner with free desert as well!!:cool1:

Congratulations to SUPER STAR HAYLEY!!! :woohoo: What a beauty and great model for your MAW!!!

Free dinner with dessert....that is awesome! Just the start to all of the Pixie Dust in all of your future!

I am so happy for and proud of you Hayley!! :goodvibes

[fulseasmama]

Hayley was chosen to be our local area person for Applebee's Make A Wish Campaign! We did not know it had started yet, until we went to Applebee's for dinner tonight. We were sitting waiting for a table and Hayley saw this on the wall!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5565.jpg

She said, "Mom that's me!":goodvibes:banana::cheer2:

It was so cool. We asked for the manager to come over and he gave us a few of the nice laminated cards with Hayley and two paragraphs about her and her wish! It is the same on both sides.

Then we heard our waitress showing the table behind us the card and asking them to donate to Make A Wish and make Hayley's wish come true. It was so awesome! The manager said they are doing great raising money and even bought our dinner with free desert as well!!:cool1:


Way to go Hayley...that is so cool. What an awesome surprise and so cool that she is helping Make a Wish with their fundraising campaign.

[my*2*angels]

Hayley was chosen to be our local area person for Applebee's Make A Wish Campaign! We did not know it had started yet, until we went to Applebee's for dinner tonight. We were sitting waiting for a table and Hayley saw this on the wall!

http://i958.photobucket.com/albums/ae62/rcq925/IMG_5565.jpg

She said, "Mom that's me!":goodvibes:banana::cheer2:

It was so cool. We asked for the manager to come over and he gave us a few of the nice laminated cards with Hayley and two paragraphs about her and her wish! It is the same on both sides.

Then we heard our waitress showing the table behind us the card and asking them to donate to Make A Wish and make Hayley's wish come true. It was so awesome! The manager said they are doing great raising money and even bought our dinner with free desert as well!!:cool1:


That is so COOL!:cool1:

[rcq925]

We are getting so close and SO EXCITED:banana::banana:

Now I am getting ready to start packing this week and now I am worried about what shoes to pack for Hayley. She has all these beautiful dresses from the Big Give and I have no idea what shoes to have her wear with them!!!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

[blessedmom4]

We are getting so close and SO EXCITED:banana::banana:

Now I am getting ready to start packing this week and now I am worried about what shoes to pack for Hayley. She has all these beautiful dresses from the Big Give and I have no idea what shoes to have her wear with them!!!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

YES, YES, YES!!! It is her MAW trip, anything goes! :thumbsup2If she is comfortable, that is all that matters! WOO HOO!!!! :yay:You are so close!

[Shannon84]

I have just caught myself up on your PTR and hope that you guys have a magical trip :wizard: I cannot wait to hear all about it

[that's nice]

Hayley was chosen to be our local area person for Applebee's Make A Wish Campaign! We did not know it had started yet, until we went to Applebee's for dinner tonight. We were sitting waiting for a table and Hayley saw this on the wall!

How cool is that! What a great picture!


She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?
Of course she can.... it is still 'summer' in Florida. Isn't it? :confused3

Don't listen to me though... I'm a guy that has no idea!

:lmao::lmao::goodvibes

[mjarecki]

Thanks Mindy! We dragged our vest to Disney two years ago and with the nice bag that Hill-Rom makes, everything fits right inside the bag and it has a handle and rolls on wheels. Not sure if you have the same model or the bag, but it actually is really easy to travel with.

I am also a germaphobe when it comes to Hayley. We actually lug our own vest the the hospital everytime she is hospitalized, because I don't want to use the one at the hospital due to germs and bacteria. I know they clean it, but you never know how well they clean it.

I am going to call Give Kids the World and ask them if there is a large pot that we can use on the stove top to boil Hayley's Pari LC nebs. We normally boil them after every treatment.

How do you clean Michael's? Have you thought about how you will do it while at GKTW?

In reading the TTA website, I think that you can use any ice packs as long as they are frozen solid (No mushy liquid). I am also entertaining the idea of just leaving it out and bringing a few baggies and then asking for ice from a restaurant once we clear security.

We only have a 2 hour flight to Orlando, so that would be fine to keep it cold until we arrive at GKTW.

I hadn't really thought about the nebulizer part. Luckily I think we have 7 of them, so I'll probably just bring them all, then I don't have to worry about boiling them. Everytime we go to the Pulmonologist I ask for more-one of these days they'll probably cut me off. Can't believe we're less than 2 weeks away from our trips!

[rcq925]

How cool is that! What a great picture!


Of course she can.... it is still 'summer' in Florida. Isn't it? :confused3

Don't listen to me though... I'm a guy that has no idea!

:lmao::lmao::goodvibes

It never hurts to have a guy's point of view!:goodvibes

[rcq925]

I hadn't really thought about the nebulizer part. Luckily I think we have 7 of them, so I'll probably just bring them all, then I don't have to worry about boiling them. Everytime we go to the Pulmonologist I ask for more-one of these days they'll probably cut me off. Can't believe we're less than 2 weeks away from our trips!

I can't believe it either!!!:cheer2:

Hayley does two different meds (two different nebulizers) in the morning and three different meds at night, so we have to clean them while there!

[Woth2982]

Hey I have been reading your pRT and I am finally caught up! So sorry Hayley wasn't feeling well, but at least she is better now! So exciting that your trip is so close! Can't wait to hear all about it!

[Mom2mitokids]

We are getting so close and SO EXCITED:banana::banana:

Now I am getting ready to start packing this week and now I am worried about what shoes to pack for Hayley. She has all these beautiful dresses from the Big Give and I have no idea what shoes to have her wear with them!!!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

Well...here in California..we are still warm and Kylee is still wearing her white sandals. She wore them all weekend with her Cinderella and Tinkerbell costumes.

[wishin' on a star]

We are getting so close and SO EXCITED:banana::banana:

Now I am getting ready to start packing this week and now I am worried about what shoes to pack for Hayley. She has all these beautiful dresses from the Big Give and I have no idea what shoes to have her wear with them!!!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

White sandals sound good to me! I would wear what is the most comfortable. Catherine wore her sneakers with some of her dresses, crocs...seriously, you want her to be comfy in whatever she has on.

Woo Hoo! YOu guys are getting VERY close! :goodvibes

[my*2*angels]

We are getting so close and SO EXCITED:banana::banana:

Now I am getting ready to start packing this week and now I am worried about what shoes to pack for Hayley. She has all these beautiful dresses from the Big Give and I have no idea what shoes to have her wear with them!!!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

YES! She can wear those sandals! We wear white shoes year round down here!LOL Whatever is going to be comfy for her!!!!:thumbsup2

[rcq925]

Good news:

Hayley's wish granter came tonight to drop off our itinerary! We got our expense check, tickets to MVMCP, all the flight information (confirmation numbers, ect.)

Hayley also got a few gifts: a stuffed fish (Larger beanie babie type) named Bubbles, an Ariel crown, a little pearl type necklace, a Make A Wish T-shirt, button, and Make A Wish bag. She also got a jewerly kit to make her own bracelets.

The best was a Make a Wish Barbie. It is so cool and staying in the box! It is a very special Make A Wish Barbie and only Make A Wish kids can get them! Too cool!!

We are now more excited than ever!!!

Bad news:

Hayley had a check up at the doctor today. She is still on IV antibiotics until Friday. Doctor thought she sounded okay, but still not 100%. We came home and she took a nap (never a good sign :sad2:). Woke her up before the wish granter got here and after she left I kissed her forehead and she was burning up! She now has a fever of 100.8! :sick: UGH! Why can't she catch a break?:confused3

So I will have to call the doctor in the morning and see what if anything we will add or do differently. She also can't go to school since she must be fever free for 24 hours. UGH!:headache:

So please keep your fingers crossed and pray that she gets over whatever this is fast so we can go on our trip as planned! We would all be heartbroken if we have to reschedule!:sad1::sad1:

[masonbsc]

hey there, I just found your PTR! i have enjoyed reading over everyones! My family will be going on my sons Make A Wish trip Nov. 27-Dec.5. We are getting excited as well! I hope Hayley feels much better very very soon!
We will keep her in our prayers. :)))

~Stephanie

[my*2*angels]

I am SO SORRY to hear that Hayley isn't feeling well! I am sending lots of prayers!

[gchockeymom]

I just found this thread today and spent the last 2 hours reading it all, in between phone calls at work.
Your kids are so cute and I'm hoping Hayley gets better quickly for your trip. My kids are both healthy and I am greatful for that.
I am taking my niece and Goddaughter to DW Nov. 11-13th for a girls only quick trip to see Rick Springfield at Epcot.
So we will miss you by 1 day.
Love all of the gifts that you guys have recieved. I'm going to look into being a part of that program, sounds awesome. I love giving back like that.
Can't wait to read how your trip goes...
Pat

[crashbb]

In reading the TTA website, I think that you can use any ice packs as long as they are frozen solid (No mushy liquid). I am also entertaining the idea of just leaving it out and bringing a few baggies and then asking for ice from a restaurant once we clear security.



Since it is a medical need, you are actually except from the liquid ban and should be able to bring whatever ice packs you need. You just need to declare it when you go through security.

The wording is not clear on the TSA site for "Travelers with Disabilities and Medical Conditions", but if they allow things that are completely liquid to be greater than 3.4oz, they should allow "slushy" ice. I've traveled with ice (for medication) and not had a problem - just had to let them know that I had it.

[Bearshouse]

Hope she is feeling better soon!!

Bearshouse

[rcq925]

WOO HOO! We are finally in single digits!! Only 9 more days until we arrive at Give Kids the World!!!:woohoo:

I can't believe we are finally this close! I want to thank everyone who has helped me plan this wonderful trip!

I especially want to thank all the BIG GIVERS for all of the wonderful pixie dust pixiedust: you have given our family that will truly make this the trip of a lifetime!! THANK YOU SO MUCH BIG GIVERS!!!!

I am sure I will have more questions next week. I am going to try and start packing this weekend! Just hard to do ahead because we don't have a lot of extra space in our house to leave suitcases out! Also still waiting to see the weather forcast for the entire week so I know exactly what to pack!

Seems like I have so much to do and I know the time will fly from here!!:woohoo:

[Woth2982]

So exciting to be in the single digits! I hope Haley feels better real fast! I have the flu right now, so something is going around. I hope the doctor is able to fix her meds so whatever she has goes away.

[my*2*angels]

Just popping over to check on Hayley! Is she feeling any better?

WOOHOO for single digits! It will be here before you know it!

[that's nice]

You guys are soooooo close!!!!!!!

Here is some dancing for your single digits!!!!!


:dancer:
:dancer::dancer:
:dancer::dancer::dancer:
:dancer::dancer::dancer::dancer:

[fulseasmama]

Wow you guys are so close. How exciting!!! I hope Haley is feeling better and packing is a smooth process. Before you know it you will be off. Yeahhhhhh!:banana::banana:

[my2girlsrock]

Hi I am new to the board but I just read your PTR. Your kids are to cute!!! I see that you guys are getting close ~ u must all be so excited. I can not wait to keep up with the rest of your PTR & your TR when you get back..... :)

[rcq925]

Hi I am new to the board but I just read your PTR. Your kids are to cute!!! I see that you guys are getting close ~ u must all be so excited. I can not wait to keep up with the rest of your PTR & your TR when you get back..... :)

Wow you guys are so close. How exciting!!! I hope Haley is feeling better and packing is a smooth process. Before you know it you will be off. Yeahhhhhh!:banana::banana:

Hey I have been reading your pRT and I am finally caught up! So sorry Hayley wasn't feeling well, but at least she is better now! So exciting that your trip is so close! Can't wait to hear all about it!

hey there, I just found your PTR! i have enjoyed reading over everyones! My family will be going on my sons Make A Wish trip Nov. 27-Dec.5. We are getting excited as well! I hope Hayley feels much better very very soon!
We will keep her in our prayers. :)))

~Stephanie

I just found this thread today and spent the last 2 hours reading it all, in between phone calls at work.
Your kids are so cute and I'm hoping Hayley gets better quickly for your trip. My kids are both healthy and I am greatful for that.
I am taking my niece and Goddaughter to DW Nov. 11-13th for a girls only quick trip to see Rick Springfield at Epcot.
So we will miss you by 1 day.
Love all of the gifts that you guys have recieved. I'm going to look into being a part of that program, sounds awesome. I love giving back like that.
Can't wait to read how your trip goes...
Pat

Thank you to all the new people who have happened on our PTR! We are 6 days and counting and so excited!!!!:woohoo::woohoo:

[rcq925]

Just popping over to check on Hayley! Is she feeling any better?

WOOHOO for single digits! It will be here before you know it!

Thank you so much for continuing to check in on Hayley. She is doing much better and went back to school today! I think she got the flu on top of her infection. She ran a low grade temp from Wednesday night until Saturday morning, but has been fever free since then!

We are SO EXICTED!!! I cannot wait for Saturday to get here!! Saturday is our 2 hour limo ride to the hotel near the airport and then we fly out at 7am on Sunday morning!!!:banana::banana:

[rcq925]

You guys are soooooo close!!!!!!!

Here is some dancing for your single digits!!!!!


:dancer:
:dancer::dancer:
:dancer::dancer::dancer:
:dancer::dancer::dancer::dancer:

Thanks Tim! Loved the dancers! You guys are getting super close too! I am loving watching Juliana open all of her Big Gives! She has received some super cool stuff!

BIG GIVERS are AWESOME!!!!:banana:

[my*2*angels]

Thank you so much for continuing to check in on Hayley. She is doing much better and went back to school today! I think she got the flu on top of her infection. She ran a low grade temp from Wednesday night until Saturday morning, but has been fever free since then!

We are SO EXICTED!!! I cannot wait for Saturday to get here!! Saturday is our 2 hour limo ride to the hotel near the airport and then we fly out at 7am on Sunday morning!!!:banana::banana:

:yay::yay::yay::yay::yay::yay::yay::yay:
SOOOO glad that Hayley is feeling better!!!

[rcq925]

We are leaving in 4 days!!!:cheer2::banana:

I can hardly believe we are this close!!!

We got our expense check from MAW and I am wondering what others did? Did you take the cash or get traveler's checks? Are traveler's checks still fairly easy to use? I really hate dealing with them myself.

Do they have little safes in the villas at GKTW like they do in hotel rooms?

I would appreciate any additional last minute information anyone wants to throw in!!!:goodvibes

[blessedmom4]

We are leaving in 4 days!!!:cheer2::banana:

I can hardly believe we are this close!!!

We got our expense check from MAW and I am wondering what others did? Did you take the cash or get traveler's checks? Are traveler's checks still fairly easy to use? I really hate dealing with them myself.

Do they have little safes in the villas at GKTW like they do in hotel rooms?

I would appreciate any additional last minute information anyone wants to throw in!!!:goodvibes

Not sure if you care; however, I am a newbie to your report as well, having posted a few times here. No advice, just excitement for you!
:banana::dance3::yay::cheer2:

Praying this is your BEST TRIP EVER, Full of Pixie Dust!

[Woth2982]

We are leaving in 4 days!!!:cheer2::banana:

I can hardly believe we are this close!!!

We got our expense check from MAW and I am wondering what others did? Did you take the cash or get traveler's checks? Are traveler's checks still fairly easy to use? I really hate dealing with them myself.

Do they have little safes in the villas at GKTW like they do in hotel rooms?

I would appreciate any additional last minute information anyone wants to throw in!!!:goodvibes

You could cash the check then go to the Disney Store and put the money on a gift card. That way you don't have to carry cash and you can use the card everywhere on Disney property for food etc. I would save a little cash if you are going to Sea World or Universal as you can't use the disney gift card there. Or go and get a prepaid Visa card from the grocery store.

[that's nice]

We are leaving in 4 days!!!:cheer2::banana:

I can hardly believe we are this close!!!

We got our expense check from MAW and I am wondering what others did? Did you take the cash or get traveler's checks? Are traveler's checks still fairly easy to use? I really hate dealing with them myself.

Do they have little safes in the villas at GKTW like they do in hotel rooms?

I would appreciate any additional last minute information anyone wants to throw in!!!:goodvibes

4 days!!!!! :woohoo::woohoo: :woohoo::woohoo:

I hope you guys have the most amazing trip!!!!! pixiedust:pixiedust:pixiedust:

If you are able to I would bring some cash and deposit the rest into your checking account if you use a debit card. I like having a hundred dollars or so in cash and use my debit for big purchases or meals. Putting it on a Disney gift card isn't a bad idea either, but if you don't spend it all in Disney, you could come home with money still on a gift card.

[kissesbykim]

We went on Tyler's wish trip less than a month ago and we just cashed the check at MAW gave us. I believe with the prepaid visa at the grocery stores they have some sort of service fee..I could be wrong though :confused3 . Although there isn't a safe at GKTW, we never felt like it wasn't okay to leave a large amount of cash there while out visiting the parks. I just kept it in one of the suitcases. They also don't have a daily house keeper....so you don't have to worry about someone coming in your house every day messing with things. They do come in to leave gifts though party: . GKTW felt like the safest place we've ever stayed. I hope you have an amazing time! I wish we were back there right now! The trip goes by so quickly! :earsboy:

[rcq925]

Not sure if you care; however, I am a newbie to your report as well, having posted a few times here. No advice, just excitement for you!
:banana::dance3::yay::cheer2:

Praying this is your BEST TRIP EVER, Full of Pixie Dust!

You could cash the check then go to the Disney Store and put the money on a gift card. That way you don't have to carry cash and you can use the card everywhere on Disney property for food etc. I would save a little cash if you are going to Sea World or Universal as you can't use the disney gift card there. Or go and get a prepaid Visa card from the grocery store.

4 days!!!!! :woohoo::woohoo: :woohoo::woohoo:

I hope you guys have the most amazing trip!!!!! pixiedust:pixiedust:pixiedust:

If you are able to I would bring some cash and deposit the rest into your checking account if you use a debit card. I like having a hundred dollars or so in cash and use my debit for big purchases or meals. Putting it on a Disney gift card isn't a bad idea either, but if you don't spend it all in Disney, you could come home with money still on a gift card.

Thanks for all the replies. I wanted to keep the MAW money separate from "our" money, so I make sure I use that first, so I did not want to put it in our account and use the debit card. I am thinking of getting one of those prepaid Visa travel cards (you can also take money off of them at the ATM), if I can find one. Has anyone used one of those before?:confused3

[blessedmom4]

Thanks for all the replies. I wanted to keep the MAW money separate from "our" money, so I make sure I use that first, so I did not want to put it in our account and use the debit card. I am thinking of getting one of those prepaid Visa travel cards (you can also take money off of them at the ATM), if I can find one. Has anyone used one of those before?:confused3

For us, the prepaid Visa's are a pain (Yes, the stores do charge a service fee when you purchase them). We have received several as gifts and some of the stores have sent them to us in lieu of checks for rebates. You have to know exactly how much money you have on the card and the cashier has to put it in exactly or the card will be declined. At restaurants, they automatically deduct a certain amount when you call it in and we had ours declined TWICE before I called the Visa company number from the card to discover what was going on. I was told at restaurants they only count a certain percentage towards the meal. I have forgotten why at this moment in time; however, I know when we told them we had a $25 card, they only gave us credit for a card with a value of $24 and change and it was declined....This has been our experience. I did a focus group on Tuesday and instead of paying me in cash as they have in the past, they gave me a Visa gift card. My husband and I both groaned when we saw it because we have NOT had great experiences with them. I hope someone else chimes in with their tips and tricks on how to use them easier!

[rcq925]

For us, the prepaid Visa's are a pain (Yes, the stores do charge a service fee when you purchase them). We have received several as gifts and some of the stores have sent them to us in lieu of checks for rebates. You have to know exactly how much money you have on the card and the cashier has to put it in exactly or the card will be declined. At restaurants, they automatically deduct a certain amount when you call it in and we had ours declined TWICE before I called the Visa company number from the card to discover what was going on. I was told at restaurants they only count a certain percentage towards the meal. I have forgotten why at this moment in time; however, I know when we told them we had a $25 card, they only gave us credit for a card with a value of $24 and change and it was declined....This has been our experience. I did a focus group on Tuesday and instead of paying me in cash as they have in the past, they gave me a Visa gift card. My husband and I both groaned when we saw it because we have NOT had great experiences with them. I hope someone else chimes in with their tips and tricks on how to use them easier!

I have also had trouble in the past using them and I think I will avoid them this time as well. I will probably keep a little cash and get some traveler's checks. They seem to be the easiest to use. Thanks for your reply!!

[LydRos]

The prepaid visa's are really a lot of trouble. Some of them charge a service fee to activate and some of them even have a service fee on every transaction that is as high as $2 per transaction. Sometimes you can get them through your bank and those are better, but you do have to know EXACTLY how much is on it when you go to purchase something because if you run a charge for more than what's their it will decline.
Travelers checks are a pain too though! I am having the same problem as you trying to decide how to carry our expense money.

[rcq925]

So the limo is picking us up at 1pm tomorrow and we will then drive 2 hours away to a hotel near our airport to spend the night. We have to be at the airport at 5am on Sunday. Our plane leaves at 7am and we are scheduled to land in Orlando at 9:15am!!

Just planning to spend Sunday hanging out and GKTW and soaking it all in! Monday will be our first park day at the Magic Kingdom and we are starting it off with breakfast at the Princess Castle at 9am!

We are SO EXCITED!!!

I want to thank all of you on this thread for all of the wonderful information and advice!!

I especially want to thank EVERYONE INVOLVED WITH THE BIG GIVE!!! Words can never express how truly greatful our family is to have been chosen to be a part of the BIG GIVE!

We are all going to look fantastic in all of our BIG GIVE clothes!!!

I promise to get on and do a full TR when we return with lots of pictures!!!

[ellenbenny]

Have a great trip, and I can't wait to hear all about it when you return!!

[that's nice]

Becky... I hope you, Nathan, and especially Hayley have the most wonderful time at GKTW & Disney! You know we will be waiting to hear all about your adventures. :goodvibes pixiedust:pixiedust:pixiedust:

I hope you find some time to relax and get away from reality.. even if for just a short week. :wizard: :goodvibes


HAVE FUN!!!!!

[Mom2mitokids]

I hope you all have a Magical trip!!I can't wait to hear all about it.

[Emilyswish]

Hooray!! Have a great trip! :cool1:

[blessedmom4]

I hope your trip is magical in EVERY way! Thank you for sharing your journey to this point with us all! :)

[cajunfan]

Have a MAGICAL trip!

I can't wait to hear all about it!

[my*2*angels]

HOPE YOU ARE HAVING A MAGICAL TRIP!! Can't wait to hear all about it!

[cantwaittoseemickey]

I hope you are all having a wonderful trip!!!

[cajunfan]

Welcome back!

I can't wait to hear all about it!

[Emilyswish]

Hope you had a truly magical time! :)

[rcq925]

So we are back from the most WONDERFUL time at GKTW, Disney and all the parks! We are exhausted and our feet are aching, but we managed to fit in all of the parks. We got so much accomplished with our GAC and Hayley's magic button! We met SO MANY characters and got so many autographs!!!

I will start a TR soon I promise! I have over 1,000 pictures so I have to sort through all of them!

[ellenbenny]

So we are back from the most WONDERFUL time at GKTW, Disney and all the parks! We are exhausted and our feet are aching, but we managed to fit in all of the parks. We got so much accomplished with our GAC and Hayley's magic button! We met SO MANY characters and got so many autographs!!!

I will start a TR soon I promise! I have over 1,000 pictures so I have to sort through all of them!

Welcome home, I can't wait to hear all about it and see the pics!! Glad you had a great time!

[4monkeys]

So we are back from the most WONDERFUL time at GKTW, Disney and all the parks! We are exhausted and our feet are aching, but we managed to fit in all of the parks. We got so much accomplished with our GAC and Hayley's magic button! We met SO MANY characters and got so many autographs!!!

I will start a TR soon I promise! I have over 1,000 pictures so I have to sort through all of them!

Glad everyone had a wonderful time. WOW 1,000 pictures!! Can't wait to see some!!

[my*2*angels]

SOOOOOO glad to hear you had such an AMAZING time! Can't wait to hear all about it!:cool1: