Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[maroo]

Quick message about GTKW. Does anyone know what events on what days are held in the evenings. Going in October trying to plan what days to do the parks an if to do MNSCHP. Any help would be appreciated. Hope to get pre-trip report started this weekend.

to the Wish Trippers thread!

I have totally done this backwards and read your website first...then this thread! I will go check out your pre-trip report very soon!!

Here is a list of the daily happenings.

SUNDAY

The World’s Largest Candy Land game from 7:30 p.m. to 8:30 p.m. at Matthew’s Boundless Playground.
Twinkle Hope’s Tea Party from 2 p.m. to 3 p.m. in the Castle of Miracles.
Village After Dark teen party from 9 p.m. to 10:30 p.m. in Julie’s Safari Theatre


MONDAY

Disney Character Photos at Julie’s Safari Theatre from 8 a.m. to 8:30 a.m. and 9:30 a.m. to 10 a.m.
Kids’ Night Out/Grown-ups’ Night Off from 5:45 p.m. to 9 p.m. at Amberville Train Station
Discovery Cove Animal Exploration from 6:45 p.m. to 7:30 p.m. on the Avenue of Angels
Safari Double Dare in Julie’s Safari Theatre from 8 p.m. to 8:45 p.m.


TUESDAY

Nickelodeon Character Photos in the Castle of Miracles from 8:30 a.m. to 9:15 a.m.
Family Fun Night begins at 7:30 p.m. in front of Julie’s Safari Theatre


WEDNESDAY

Horseback Riding from 8 a.m. to 11 a.m. at Keaton’s Korral
Kids’ Night Out/Grown-ups’ Night Off from 5:45 p.m. to 9 p.m. at Amberville Train Station
Village Idol in Julie’s Safari Theatre from 7:45 p.m. to 9 p.m.


THURSDAY

Disney Character Photos in Julie’s Safari Theatre from 8 a.m. to 8:30 a.m. and 9:30 a.m. to 10 a.m.
Winter Wonderland from 6:30 p.m. to 8:30 p.m. on the Avenue of Angels and the Castle of Miracles
Carriage Rides from 6:30 p.m. to 8:45 p.m.
Winter Wonderland Parade at 7:45 p.m. on the Avenue of Angels
Santa Claus in Julie’s Safari Theatre from 6:30 p.m. to 8:30 p.m.


FRIDAY

Universal Orlando Character Photos from 8:30 a.m. to 9:15 a.m. in the Castle of Miracles
Pirates and Princesses Party with Shamu and friends from 7:30 p.m. to 8:30 p.m. on the Avenue of Angels


SATURDAY

Horseback Riding from 8 a.m. to 11 a.m. at Keaton’s Korral
The movie “The Big Surprise” at 7:30 p.m. in Julie’s Safari Theatre
Mayor Clayton’s Birthday Party from 7:45 p.m. to 8:30 p.m. on the Avenue of Angels

Also, here is the website for the families.

http://www.gktw.org/pre/default.asp?p=welcome

This is awesome!!

Be aware, though, that this schedule can change. You will have to pick up a GKTW schedule when you get there.

Especially October...I know they had a schedule change when we were there because of something that American Airlines does each year.

Liam's appointment went pretty well. He's gained a little more weight and grew about 1/4 of an inch, which is always good with someone with CF. His lung functions remain real good and the sputum results wont be in for a couple of days so unless I get a phone call from him I know there are no concerns there.

The only problem is that Liam's doctor is concerned that Liam's coughing has increased, which means that we are not getting as much of the mucas out of his lungs that we would like to. He put him on an antibiotic for two weeks and he have piggy backed a follow up appointment to his sister (who has asthma) next month.

What has got me mostly worried is the fact that the Doctor thinks that the coughing should be a lot better, and even though his lung functions are great there will come a time when we need to decide if we want to but him in the hospital for a "Tune Up" so we can find the medicine coctail that will improve it.

I've been pretty lucky until now. Even though Liam wasn't diagnosed until last Dec, he has been pretty healthy. We have only gone to the ER once with a fever that wouldn't go down and they gave him medicine and sent him home. I know it is rare to have a child with CF and not end up with at least one stay at the hospital, but I still am a little freaked out.

Good news is that since it wouldn't be an emergency, if this is something we need to do, we can wait until after Disney.

I am glad the appt went well! It certainly sounds like he has been really healthy.

I think it is pretty normal for them to do those "tune ups" - admit them for a little while to do IV antibiotics - just to keep them healthy. Our friends with a child with CF also do that occasionally, usually during the summer so they stay well for school.

Sorry about the potential hospital stay, though.

I've started a pre trip report. Thanks to everyone that has already answered several questions. Hope you enjoy following our adventure.
http://www.disboards.com/showthread.php?p=32677644

I am so glad you started a pre-trip report!!
I will link it on the first page!!

Welcome to our little family!

 

[StefaniLyn]

Just wanted to let you know that I updated my pretrip report today. We went to a Make A Wish 25th Birthday party tailgate party and Brewer's game. It was an incredible day and we even got to see one special little boy, Sam, have his wish to sing the national anthem granted today! Here is the link to the update:

Chapter 5 - The Racing Sausages meet Mickey Mouse

I am so sorry to hear about Alize. Your family is in our prayers and I hope that you find comfort in the incredible memories you made while on your Wish Trip.

Bella had a very rough GI appointment last week as well as a new diagnosis from hematology. It's been a difficult week for all of us. I'll post more about it later as it could affect our Wish Trip plans. It wouldn't prevent us from going, just make things a little trickier while there. Anyway, we had such a great day today that I just wanted to forget all the bad stuff and share the good times with fellow Wish-Trippers. Hope you enjoy the new "chapter" in our pretrip report!

 

[Corrine 1973]

Only two months to go.

I swear that just yesterday I put in the ticker and had almost five months to go yet. Time is sure flying.

It's strange though, I can't help but feel as excited that I am about going to WDW, that the the sooner it comes means the sooner it will be over.
I know I shouldn't think that way, we will have our memories for the rest of our lives (which is why I will be taking tons of pictures) and I do plan on returning to WDW in the next 2-3 years. But as alot of people say, there will only be one wish trip.

I guess I am anticipating that Post Disney World Syndrome, and we haven't even been there yet. Snap out of it Corrine!!!!

 

[Matt1026]

Only two months to go.

I swear that just yesterday I put in the ticker and had almost five months to go yet. Time is sure flying.

It's strange though, I can't help but feel as excited that I am about going to WDW, that the the sooner it comes means the sooner it will be over.
I know I shouldn't think that way, we will have our memories for the rest of our lives (which is why I will be taking tons of pictures) and I do plan on returning to WDW in the next 2-3 years. But as alot of people say, there will only be one wish trip.

I guess I am anticipating that Post Disney World Syndrome, and we haven't even been there yet. Snap out of it Corrine!!!!

I am with you. On Saturday I told my husband you know two months from today our trip will be over. I said can you believe it. He said we have not even left yet why are you thinking about that. As excited as we are going it has been a wonderful distraction of the concern over my son. Instead of focusing on the disease inself we are able to focus on an incredible trip of a life time. So I understand.

 

[maroo]

Only two months to go.

I swear that just yesterday I put in the ticker and had almost five months to go yet. Time is sure flying.

It's strange though, I can't help but feel as excited that I am about going to WDW, that the the sooner it comes means the sooner it will be over.
I know I shouldn't think that way, we will have our memories for the rest of our lives (which is why I will be taking tons of pictures) and I do plan on returning to WDW in the next 2-3 years. But as alot of people say, there will only be one wish trip.

I guess I am anticipating that Post Disney World Syndrome, and we haven't even been there yet. Snap out of it Corrine!!!!

I am with you. On Saturday I told my husband you know two months from today our trip will be over. I said can you believe it. He said we have not even left yet why are you thinking about that. As excited as we are going it has been a wonderful distraction of the concern over my son. Instead of focusing on the disease inself we are able to focus on an incredible trip of a life time. So I understand.

aw!!!!

Don't be too worried about the post wish trip Disney depression till you get back!

Actually...if we could have anticipated it...I would have done two things...

1. Get friends to meet us at the airport. Bring signs, balloons...something to make the trip HOME happy!! (there is so much fanfare going and none coming home) I would have literally asked some of Lauren's friends to come meet us at the airport and have a little "party"...

2. Plan something - something we can do as a family - for a couple of weeks after we get back. An amusement park. Something BIG for the family that doesn't require much planning but would be something that you could all look forward to...


So there you have it...Maroo's Musings for the day.

 

[Matt1026]

aw!!!!

Don't be too worried about the post wish trip Disney depression till you get back!

Actually...if we could have anticipated it...I would have done two things...

1. Get friends to meet us at the airport. Bring signs, balloons...something to make the trip HOME happy!! (there is so much fanfare going and none coming home) I would have literally asked some of Lauren's friends to come meet us at the airport and have a little "party"...

2. Plan something - something we can do as a family - for a couple of weeks after we get back. An amusement park. Something BIG for the family that doesn't require much planning but would be something that you could all look forward to...


So there you have it...Maroo's Musings for the day.

Sounds like pretty good advice to me. I like # 2. Maybe something to go with.

 

[Corrine 1973]

aw!!!!

Don't be too worried about the post wish trip Disney depression till you get back!

Actually...if we could have anticipated it...I would have done two things...

1. Get friends to meet us at the airport. Bring signs, balloons...something to make the trip HOME happy!! (there is so much fanfare going and none coming home) I would have literally asked some of Lauren's friends to come meet us at the airport and have a little "party"...

2. Plan something - something we can do as a family - for a couple of weeks after we get back. An amusement park. Something BIG for the family that doesn't require much planning but would be something that you could all look forward to...


So there you have it...Maroo's Musings for the day.

Sounds like a great idea to me as well. We have season passes to Six Flags so that is always something fun we can plan for the next couple of weekends. Plus Fright Fest (at Six Flags for halloween) should be starting about that time.
I like #1 as well, and I will have to talk to my mom about doing a little coming home party at the house. Maybe not at the airport (over an hour from our house) but what a surprise to come home and find everyone there to welcome you back and hear all about your trip. I think I have some calls to make.

 

[maroo]

Sounds like a great idea to me as well. We have season passes to Six Flags so that is always something fun we can plan for the next couple of weekends. Plus Fright Fest (at Six Flags for halloween) should be starting about that time.
I like #1 as well, and I will have to talk to my mom about doing a little coming home party at the house. Maybe not at the airport (over an hour from our house) but what a surprise to come home and find everyone there to welcome you back and hear all about your trip. I think I have some calls to make.

This was Lauren's biggest disappointment about our trip. She said the worst time during the whole trip was flying home and getting off the plane to nothing.

She had a send off party with that rainbow at the airport...so I really think she thought people were going to be there when she got back.

But more that being sick for 2 days, Lauren's biggest disappointment was the coming home. For whatever that is worth.

 

[myasma]

Just a quick question. How do you change the title of a post?

 

[maroo]

Just a quick question. How do you change the title of a post?

You go to EDIT on the post (bottom left hand corner of the post itself)... then "Go Advanced" and then you can retype the title on the top.

Is that what you are asking?

If you want to change your TITLE of the whole thread...then you go to the FIRST post and change that title...

 

[palpluto]

To anyone from the beginning days of the Wish Trippers....Unite! thread, I wanted to let you know that Alize died today. Our memories of his Wish Trip will be something to bring us smiles in the coming days. Karen

Karen, I am so sorry. I was an early wishtripper (12/07) and remember reading all about Alize's trip.

 

[myasma]

You go to EDIT on the post (bottom left hand corner of the post itself)... then "Go Advanced" and then you can retype the title on the top.

Is that what you are asking?

If you want to change your TITLE of the whole thread...then you go to the FIRST post and change that title...

Thank You.

 

[Corrine 1973]

So next week at 11pm wednesday night me, my brother, my boyfriend, and my 3 kids are taking the 9-10 hour drive to Missouri for the DeeDon Family reunion. I am very excited, my dad's a truck driver from Missouri and we hardly ever get to see him. He has actually only seen Aidan one time (last year in September) and hasn't seen Liam since he was dx.

We are driving in the middle of the night so that the kids will be asleep during the trip, so hopefully that wont be an issue. But this will be our first trip since Liam's dx, and our first trip with such a long car ride. Does any one have any advice????

 

[MomTo4+more]

Corrinne - First of all, how exciting to see your dad and other family members! I hope it is a very special time. When I take road trips with Deyki, his doctor send us with a travel packet. It includes a basic medical history, his most recent labs, contact info for his hospital, and recommended treatment for a variety of issues he could face.

Not all hospitals know how to handle children with certain diagnoses. Deyki's packet came in very handy when we went to the state fair three years ago. He spiked a fever half way there and we had to stop in Bloomington-Normal at the nearest hospital. Even with the packet, it took them a long time to figure out what Deyki needed - most kids don't go straight to the ER with a temp of 101 and no other symptoms. Once they knew what to do, it took even longer for them to get an IV in him and understand that although he needed 3 days of IV meds, he could get them as an out-patient and didn't need to be admitted. Then we needed the packet again when we arrived in Springfield for two more days of IV meds. It was not simple, but I think it would have been horrible without that packet!

I hope your road trip is uneventful and merely delightful!

 

[Eeyores Butterfly]

Corrine: Where in MO will you be?

For those in the MO area Make A Wish is having a Ride for Wishes (poker ride) this Saturday. I'm working the stop at the Blue Springs Harley Davidson.

We are also in full swing planning our Walk for Wishes at Oak Park Mall. I talked to the oganizers of the Kansas City Renaissance Festival and some of their entertainers will be there!

 

[Corrine 1973]

The reunion is in Neosho, but we will be stopping off in Joplin for a little bit on Thursday Morning to hang out with my Dad. He lives in Joplin. Are day is pretty full on Saturday 25 (I figured out the your Poker run is on Sat 18) but we don't have a lot planned for friday or thursday evening yet. We are planning on heading home sometime on Sunday.

Hope your Poker run has an excellent turn out. I'll tell my dad about it, if he doesn't have to work he would probably love a good excuse to ride his Harley.

 

[myasma]

Mya had her clinic visit today for what was only suppossed to be a quick lab check. It wound up being a two hour stay. I found out that her AFP is at 22. I was happy at first because it was lower then last time but then Mya's onco explained they had last checked it 6 weeks ago which meant her tumor had stopped growing but started growing again while we were waiting for her counts to come up. So Mya is still in active relapse and we will have to switch her chemo protocol. Her onco wants to switch her to a protocol that they typically use for brain tumor patients. I honestly don't know what will happen next. I am trying to continue to be strong but it is getting harder.

 

[Corrine 1973]

Mya had her clinic visit today for what was only suppossed to be a quick lab check. It wound up being a two hour stay. I found out that her AFP is at 22. I was happy at first because it was lower then last time but then Mya's onco explained they had last checked it 6 weeks ago which meant her tumor had stopped growing but started growing again while we were waiting for her counts to come up. So Mya is still in active relapse and we will have to switch her chemo protocol. Her onco wants to switch her to a protocol that they typically use for brain tumor patients. I honestly don't know what will happen next. I am trying to continue to be strong but it is getting harder.

I am so sorry you are going through this, I wish there was something I could do to make it all better. Unfortunatly this is the best I got right now.

I will be praying that you and your special daughter have the most magical time at Disney world starting in two days. Filled with so much Pixie dust that neither of you have to worry about doctors, chemo, and tumors for the whole week.

 

[MomTo4+more]

Mya had her clinic visit today for what was only suppossed to be a quick lab check. It wound up being a two hour stay. I found out that her AFP is at 22. I was happy at first because it was lower then last time but then Mya's onco explained they had last checked it 6 weeks ago which meant her tumor had stopped growing but started growing again while we were waiting for her counts to come up. So Mya is still in active relapse and we will have to switch her chemo protocol. Her onco wants to switch her to a protocol that they typically use for brain tumor patients. I honestly don't know what will happen next. I am trying to continue to be strong but it is getting harder.

My heart goes out to you and Mya. I am so very sorry that you have to deal with this. I will be praying for your strength to increase and for peace to surround you. I wish there were more I could offer you. Please keep us updated.

 

[myasma]

I am so sorry you are going through this, I wish there was something I could do to make it all better. Unfortunatly this is the best I got right now.

I will be praying that you and your special daughter have the most magical time at Disney world starting in two days. Filled with so much Pixie dust that neither of you have to worry about doctors, chemo, and tumors for the whole week.

My heart goes out to you and Mya. I am so very sorry that you have to deal with this. I will be praying for your strength to increase and for peace to surround you. I wish there were more I could offer you. Please keep us updated.

Thank you, we need all the prayers we can get. I am just devestated right now. It never gets easier to find ourselves at square one even though its happened several times. If anything it gets harder. No matter what happens, we are going to enjoy ourselves on our Wish trip and I refuse to let even the thought of Cancer cloud my thoughts. Again please pray that I keep up my faith as I really am struggling with this right now.