Aidan's wish trip to Tink's home 3/1-3/7

[Thumper321]

Hello, all! I am a brand-newbie here, but I have found lots of wonderful information and very touching stories, so I'd like to stay around. . . If you'll have me. I guess I should start with . . .

THE CAST:

Me, Miranda, Mom - I am an (eternally) 29 year old stay at home mom to 3 beautiful boys. You'll get to meet each of them later. I have been married to my husband, Chris, for 9 years. This will be my second trip to Disney, but seems like the first since I was pregnant the first time and missed a lot. I love being able to stay at home with the boys, but was a nurse in my previous life. In my spare time (what's that?!?!) I love to do things like photography, scrapbooking, and art.

Chris, DH, Dad - Chris is my wonderful 46 year old husband. He is an optician which is just a fancy way of saying that he makes eyeglasses. He is not an optometrist, ophthalmologist, or any other eye doctor. He just makes glasses in an optical lab. As I said before, we have been married for 9 years. Chris is the Cubmaster of our local Cub Scout pack, which occupies a lot of his free time.

Keegan - Our 9 year old son. He is in 4th grade, and thinks he's grown. He loves things like Outer Space, Marine Life, Legos, and hot wheels cars. We lovingly call Keegan our little brainiac.

Aidan - Aidan is our almost 6 year old son. He is the "Wish Child" in our story. Aidan is in kindergarten, and loves school. He also loves sharks and Tinkerbell. Aidan also has a baby doll named Addie, who is his best friend other than his two brothers. She has been with him for every hospital stay and doctor's appointment since he was 2, and is almost a part of our family herself.

Peyton - Our youngest son. Peyton turned 3 in November. He is a fiesty little thing, but I guess you have to be when you are the youngest. At least that's what my husband tells me. Peyton is a sweet boy who loves Dinosaurs and Cars. He does have a temper, but it generally only comes out with his brothers.

The Boys:

All 5 of Us:

Our Wish Kid, Aidan:

The WHAT, WHERE, WHY, and WHEN shall follow. . . .


Table of Contents:

The What, Where, Why, and When
The Initial MAW Meeting
Picture from the Wish Meeting
Must See / Must Do
We've Got Dates, Aidan's Sick, and Some Scary News
1/26 Quick Update
Relief
How Our MAW Chapter Handles Sponsors
Snow Day Picture
Tentative Itinerary
Big Give Invitation
A Week of Good News
Our Make A Wish Packet Arrived!
"Super Huge Big Give" and Other Smaller Issues
Random Ramblings
Great Mail Day -- GKTW Packet and Big Give Packages
A Tinker Bell Birthday!
Bad News About the Stroller
More Big Give
Good News About the Stroller
The Reveal Party Introduction
Reveal Party -- The Great Valley
Reveal Party -- The Enchanted Forrest
Reveal Party -- Fantasyland
Reveal Party -- Shipwreck Cove
Reveal Party -- Radiator Springs
Reveal Party -- Agrabah
Reveal Party -- Area 51 and Granting

 

[Thumper321]

The WHAT:

A trip to Disney World, of course! Actually, Aidan's exact wish was "to fly on an airplane to Tinkerbell's home, and come back home when I'm done." When our wish volunteer asked where Tinkerbell's home is, Aidan's said "Disney World! With the big castle!" So, we're anxiously awaiting our first vacation in 7 years!

The WHERE:

Well, that's kind of a given. We'll be traveling to beautiful Kissimmee, FL to stay at GKTW, but will be visiting many Orlando area attractions during our stay.

WHEN:

We're not quite sure yet. We met with our wish volunteers on January 05, and are awaiting our actual travel dates. I'll be sure to post when I know the details!

WHY:

This is the hardest part. Aidan has many medical issues which are life threatening, so he wasn't qualified based on one diagnosis. Aidan has chronic lung disease, panhypopituitarism, adrenal insufficiency, pancreatic insufficiency, Shwachman Diamond Syndrome, and many other medical problems. Basically, he has lived in and out of the hospital since he was born. For instance, last school year was 180 days and he missed 104 of them. Okay, the chronic lung disease is pretty much self-explanatory, but basically, Aidan's lungs are severely damaged to the point where he will never have normal pulmonary function. The panhypopituitarism is caused by a birth defect that prevents his pituitary gland in the brain from functioning normally. Since the pituitary gland controls all other endocrine glands, his thyroid, adrenal glands, etc. also do not function normally. Of all of these, the adrenal insufficiency is the most life threatening. If Aidan is injured or ill or just under stress, his adrenal glands to not trigger the appropriate reaction and initiate the healing process. The pancreatic insufficiency is related to the Shwachman Diamond Syndrome (SDS). SDS is similar to cystic fibrosis, but in addition to the pulmonary and GI issues, SDS kids also have hematological issues. What does this mean? Well, neutrophils are a type of white blood cell that fight infection. Basically, Aidan's bone marrow does not produce adequate or effective neutrophils. He is often anemic or neutropenic. This means that his body cannot fight off infections. SDS is a form of bone marrow failure or BMF. When you combine the SDS with the adrenal insufficiency, it means that Aidan is more likely to get an infection, it is more like to be a severe infection, and his body is not likely to be able to fight it without extreme treatment. SDS also increases his chance of developing leukemia at some point in his childhood or as a young adult.

One of Aidan's doctors recommended Make-A-Wish. At first, we resisted it. I guess it's just kinda hard to think of your child as the type that is eligible for a MAW trip. It took us a while to swallow it all. Anyway, MAW was patient with us. In December, we decided to go ahead with Aidan's wish. On 12/22, we got notification of his official eligibilty. On 12/29, our wish volunteer called to set up our initial meeting. On 01/05, Aidan's wish volunteers came to our home to talk to us about Aidan's wish.

So, that pretty much brings us to now. We are waiting for dates and plans. Being as this is everybody's first trip (other than my *partial* trip in 2000), I would love any tips -- on traveling to Disney in general, traveling with a special needs child (equipment, formula, injections, etc.), traveling with children in general, etc. I feel somewhat lost as of right now, so any help is appreciated.

I'm so glad that I found these boards! I can't wait for the rest of the journey to unfold!

 

[Thumper321]

This post is basically for my own memory, which seems to get worse with each child. : Hopefully later on it will help somebody else who is just in the beginning stages.

Our initial meeting with our two Make-A-Wish volunteers was on Tuesday, Jan. 05. It was in the evening after Chris got home from work. All of the boys were excited, but especially Aidan. Our volunteers got there, and the boys ran to the door and opened it. They were so excited! Anyway, we meet our volunteers, Teri and Nancy. They brought gifts for all three of the boys -- a stuffed Sea World shark and a balloon animals kit for Aidan, a Nerf bow & arrow thing for Aidan and Keegan, and a Sully toy (Monsters, Inc.) for Peyton. I think that's all the gifts? This just got the boys more excited!

After the gifts, Nancy sat down with the boys and Teri sat down with Chris and me. We got the paperwork part, and the boys got the fun wish stuff part. Nancy talked to each of the kids about what they liked -- favorite color, favorite food, favorite movie, favorite book, favorite hobbies, etc. She then talked to Aidan about his wish. This was where he officially wished for Disney World. They talked more about his wish, and she asked him to draw a picture of his wish. He drew Cinderella's castle with fireworks. Chris and I went over paperwork such as auto insurance, driver's license info, liability releases, publicity info, etc.

Our whole meeting lasted about an hour and a half. And let me tell you, it was so hard to get the boys settled down after the meeting! I can only imagine how hard it's going to be after the reveal party and the night before we actually leave!

We were told that we probably wouldn't hear back from them for 2 - 3 weeks, and we are only 1 week in, so I'm guessing we still have a little bit of a wait.

Guess that pretty much sums up the initial meeting. Will post when we have more to share.

 

[pipersmom]

Miranda! Your family and boys sound lovely! My daughter Piper has CF, so I know a bit of what you go through, but obviously not everything. I'd heard of SDS, but didn't realize how involved it is for you, and thank you for the great explanation. I'm so excited for you guys getting to do a wish! Waiting for dates is the hardest!! There's a whole community of us here that are all Wish Trippers, I'm not sure if you've found the thread or not, but here's a link:

Wish Trippers Unite!

On the first page there's a whole list of tips and links specific to wish trips! I've learned so much since I joined the Dis..just a warning though, it can be addictive!! Looking forward to following along, and hopefully seeing some pics of you and your family! (We're pic-cy people.. )

 

[Wee Annie]

Miranda,

just wanted to say hi! We are going to GKTW with MAW on 4/17. I have three daughters, but my wish kid is the youngest -- 3 -- and her name is Elke. I know a bit of what you are going through with the bone marrow issues and low blood counts, because Elke has leukemia (was diagnosed when she was 2).

Can't wait to hear more about your planning! I don't have a pre-trip report because, well, because I just don't know if I'm up to the challenge. It's hard enough for me to keep on top of Elke's Caringbridge site! But I admire those who do it, and love to read them when I have time.

Best,

Ann

 

[Thumper321]

Looking forward to following along, and hopefully seeing some pics of you and your family! (We're pic-cy people.. )

Thanks, Pipersmom! I will definitely be posting pics as soon as the boards will let me. I'm sorry to hear about Piper's CF. Unfortunately, we are familiar with many aspects of CF. Aidan takes enzymes, does chest PT, nebulizer treatments, ABDEK supplements, etc. Can't wait to read more about your wish trip!

 

[Thumper321]

Miranda,

just wanted to say hi! We are going to GKTW with MAW on 4/17. I have three daughters, but my wish kid is the youngest -- 3 -- and her name is Elke. I know a bit of what you are going through with the bone marrow issues and low blood counts, because Elke has leukemia (was diagnosed when she was 2).

Hi, Ann! Elke sounds like a tough little girl! I would love to visit your CaringBridge page if you're willing to share the address. Aidan has a Care Page, but I haven't been very good at keeping up with it. Anyway, glad to see that Elke is getting her wish, and would love to hear how things are going, even if you don't have time to do an official PTR!

 

[kellyw8863]

Just stopping by to say

 

[cantwaittoseemickey]

Hi Miranda Just wanted to stop in and say hello. You have a beautiful family. I cannot wait to hear your dates. I am so sorry for the long road Aiden has had. I can picture the joy in his eyes when they opened the doors for the Wish granters. hugs!

 

[pipersmom]

I looove the pictures..and I was right, you do have a beautiful family I'm glad you made it over to the wish trippers thread, I can't even describe how much support everyone here has been to me! The boys are so cute!

 

[pacrosby]

Hi Miranda....welcome!! We actually came back from our Wish Trip last month. It was more than we ever imagined. Like you I had resisted for years.................just wasn't ready to "go there" mentally....................but now I'm just so very very glad we did. Anyway just wanted to welcome you. I'm pretty immersed in my Trip Report right now but like to lurk on everyone else's PTR's when I can. Hope you hear back soon so that the real planning can begin. The planning was almost as much fun as the trip!

Pamela

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607

Matty's Wish Trip "Mom, Dad, 3 Kids and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

 

[elizabethswan]

your boys are all adorable. so glad they are going to get to go on this trip. great ptr so far!

 

[kdzbear]

Welcome!

 

[Momofwishkid]

Hi Miranda! Just wanted to say Hi and Im so glad you found the boards they are just amaziing and the support unbelievable. I cant wait to follow along. Did you request any specific dates??

 

[Applemomma]

Hi Miranda! Just wanted to let you know I'm following along!

 

[Wee Annie]

Hi, Ann! Elke sounds like a tough little girl! I would love to visit your CaringBridge page if you're willing to share the address. Aidan has a Care Page, but I haven't been very good at keeping up with it. Anyway, glad to see that Elke is getting her wish, and would love to hear how things are going, even if you don't have time to do an official PTR!

Miranda,

Elke's caringbridge site is:

http://www.caringbridge.org/visit/elkebrown

Another reason why I don't think I'll do a PTR is I'm really not tech-savvy. I have no clue how to put pictures in, just learned how to quote -- looky above! -- and am still learning how to insert hyperlinks (or whatever they're called). Hopefully the link above works. If not, the site is under "elkebrown".

Question: is Aidan a candidate for a bone marrow transplant? Would that even work with his condition?

Ann

 

[maroo]

Hi there!

Bless your heart - sounds like your family has been through a lot!

We will do our very best to help you plan and celebrate the days of planning, too!!

If you would like information about how to post pictures - you can look on the 2nd post of the Wish Trippers thread (on the disABILITIES board) and it will give hints about how to post pictures, etc. If you want!

Wee Annie - this may help you, too! If you want to check out the 2nd post of the Wish Trippers thread - it will tell you how to post pictures.

 

[pnutallergymom]

Hi Miranda!! I just wanted to stop in and say!!!!

Your family is beautiful!!! I too, understand the living in the whole hospital thing!! My daughter, Brigitte, has been in and out of the hospital since she was born as well.

Can't wait to follow along on your PTR!!!! It is so exciting planning, isn't it???

 

[Thumper321]

Miranda,

Elke's caringbridge site is:

http://www.caringbridge.org/visit/elkebrown

Another reason why I don't think I'll do a PTR is I'm really not tech-savvy. I have no clue how to put pictures in, just learned how to quote -- looky above! -- and am still learning how to insert hyperlinks (or whatever they're called). Hopefully the link above works. If not, the site is under "elkebrown".

Question: is Aidan a candidate for a bone marrow transplant? Would that even work with his condition?

Ann

The link worked fine. You're more tech-savvy than you thought. I just figured out the multiple quote feature myself -- trying it out on this post. Elke has been through a lot in the last 14 months! I'm glad to hear that she's doing well for now!

Aidan is not a candidate for bone marrow transplant at this time. However, he has bone marrow biopsies once a year, and when those get worse, a BMT would be an option. That's assuming that we can find a match.

They are considering starting him on GCSF and IVIG soon. So, we'll see what happens with that.

Hi Miranda! Just wanted to let you know I'm following along!

Thank you! Hope I do okay with the whole PTR thing. Since I'm new, I'm just jumping in. I'm figuring it out as I go though!

Hi Miranda! Just wanted to say Hi and Im so glad you found the boards they are just amaziing and the support unbelievable. I cant wait to follow along. Did you request any specific dates??

The boards do seem unbelievable! I've already found tips and tricks that I would've never thought of! We did request specific dates. Our MAW chapter said that we can probably go as early as the end of February, so we requested either the week of March 1-7 or March 8-14. I'm hoping that we'll get one of those. Aidan cannot maintain his body temperature very well due to his endocrine/metabolic problems, so we probably wouldn't be able to go once it gets hot. But we'll just have to see what they are able to work out.

Hi Miranda....welcome!! We actually came back from our Wish Trip last month. It was more than we ever imagined. Like you I had resisted for years.................just wasn't ready to "go there" mentally....................but now I'm just so very very glad we did. Anyway just wanted to welcome you. I'm pretty immersed in my Trip Report right now but like to lurk on everyone else's PTR's when I can. Hope you hear back soon so that the real planning can begin. The planning was almost as much fun as the trip!

I've read a little bit about Matty's story, mainly Maroo's report, but it looks like he had a truly magical experience! Can't wait to read the full report! Feel free to lurk as much as you want.

Thanks for the warm welcome everybody! Like I said, I'm learning as I go, so I hope that I do okay with this. I'm glad you guys are here. . . otherwise, I'd probably be about to lose my mind during this wait! I'll keep you updated!

 

[pipersmom]

The boards do seem unbelievable! I've already found tips and tricks that I would've never thought of! We did request specific dates. Our MAW chapter said that we can probably go as early as the end of February, so we requested either the week of March 1-7 or March 8-14. I'm hoping that we'll get one of those. Aidan cannot maintain his body temperature very well due to his endocrine/metabolic problems, so we probably wouldn't be able to go once it gets hot. But we'll just have to see what they are able to work out.

Woohoo..I hope the first set of dates work out for you! We're going the 2-8 of March, and another family is going the 3-9! Maroo is also going to be at WDW in that window. It would be very cool to have another family going in that window! Piper also has heat problems, so for us it was March or wait until October!! Keeping my fingers crossed the dates come through for you!