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

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

Here we are (Our family picture from Christmas 2009):

Here's Hayley and Nathan at Easter:

Hayley during her hospital stay last week:

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!!

I wish we could leave tomorrow

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!

 

[maroo]

to the world of Wish Trips!

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

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!

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.

to the world of Wish Trips!

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

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!

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!

 

[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!

 

[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!

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!

 

[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!!!

 

[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!!

 

[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!

 

[kellyw8863]

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

 

[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!!

 

[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.