Justins Wish trip :) Pre trip report...

loveappletrees

Mouseketeer
Joined
Feb 19, 2012
Hi there

So I'm not sure how to start or if I am doing this correctly but my son has been granted a wish through the rainbow wish society of Alberta. A wonderful organization that grants wishes for kids with chronic or life threatening disorders or conditions.

rainbowsociety.ab.ca


We are hoping to be able to take his trip to span over the star wars weekends( star wars=major obsession). The tricky part is that we adopted a daughter and our wish organizer can't organize until we get her passport (which we need finalization papers and new birth certificate for!) The papers are in the courts just waiting....

I've taken a bit of a peek on the boards to see how everyone's wish trips went and am hoping you all wouldn't mind helping me with some questions and answers to help me make my son's wish trip truly magical..
 
Feel free to ask any questions and we will try our best to help. You may want to ask them on the Wish Trippers thread as well.
 
Feel free to ask any questions and we will try our best to help. You may want to ask them on the Wish Trippers thread as well.
::yes::
I just stuck the Wish Trippers thread toward the top of the board to make it easier to find.

You will find a lot of advice there. Some may be about the Make a Wish organization and not be applicable to your family, but there is a lot of general information there. That thread also has quite a bit about Give Kids the World, which is where many Wish kinds stay, regardless of the organization that is sponsoring their wish.
 
GKTW sounds great the sense of belonging and community must be amazing to be a part of. But our wish society has a contract with Lake Buena Vista Resort & Spa so that is where we will be staying, has anyone been there? Can anyone tell me anything about them?

Thanks for moving the wish trip thread up for me :)

-m
 
I'm not familiar with that resort. Do they have a website you can visit or does your WISH organization have more information? Hopefully someone will come along who has stayed there. I hope you get the dates you want and have a magical trip!
 


Yes, that is their site, thank you for posting it :) We would love to talk to any other Rainbow wish families that may be out there and have done the WDW wish with their child. Also if anyone has any tips or hints about wish trips that span over star wars weekends we would love to hear from you too.

I will try to get back here after the kidlits are in bed to do a little into and put our tentative plan out there.

Thank you to above repliers :thumbsup2.
I feel super lucky to have stumbled on these boards when I was searching the net for ways to make J's trip special. I am so excited to as J says lets get this thing planned!

I asked him today what was most important for him to see or do on his wish trip his reply was "well... um just everything we can fit in to see and do.."
no pressure!! :scared1:
 
It is a lot closer to all the Parks than GKTW. However, it is a high-rise hotel at the edge of an outlet shopping mall.
 
Hi again everyone :)

Here goes a bit of an intro:

Our wish kid is Justin...
He is our "lottery child".
We apparently had a one in a billion chance of having him. He has a rare chromasome disorder that only one other living child in the world has. There is no actual name but in basic terms the short arm on his chromasome goes 11,12,13,12,13,14... so he's got a little extra something, something :lovestruc

So, From the time he was born (4 weeks early) It started out (kinda) normal he did need oxygyn after birth but they sent us home the next day said that he may have delays from being born early…

Well we got him home and turned around and took him back to the city an hour later, he just didn’t seem right.

When we got back to the hospital they tested his sugars and they had bottomed out and he was emergency gavaged(fed by tube) so he didn’t get brain damage from the lack of sugars. At this time they decided we shouldn’t have been sent home as his billyrubin was too high. So we were admitted to the NICU for the next 2 weeks

This is when the clues started that there was something abnormal although we wouldn’t recognize it till later. From there the next thing I noticed when he was feeding one day was that one of his pupils was misshapen and the iris was somewhat bumped up. He also couldn't track a toy visually. The bump turned out to be a rare iris cyst something that the leading pediatric opthomologist (who was retiring) hadn’t seen in his career. If it was left it would grow and cause him to be completely blind in that eye so at 6 months he had surgery to deflate it. From that surgery he did later develop cateracts and needed surgery again to implant an artificial lens and then a third time to make a hole in the artificial lens because cells were collecting underneath. Also with his eyes he has a condition called nystagmus where his eyes bounce and drift and snap back into place, this is a nurological condition that cannot be corrected. So with all of those things plus his farsightedness he is legally blind.

The next area of concern was his development he didn’t follow the usual timeline and didn’t sit until a year, walk until two etc. He does pretty well now but has Sensory processing disorder and dyspraxia( brain to muscle planning difficulties) . SPD causes him to fear/ be easily overwhelmed by certain sounds etc.unlike ADD where you can't focus on one thing easily with SPD you can't not focus on everything.
He has a stronger fight flight or flee reaction and is constantly in a state of hyper awareness.Our OT says to imagine that feeling when you are driving along and some thing darts in front of your car, you slam on the breaks and are likely feeling your heart pumping in your ears your eyes darting around looking for anything else that may run out and shock you and a shakey feeling from your head to the tips of your toes, thats the way SPD kids feel all-the-time.
but on the other hand he is a sensory seeker so you will find him desiring thrill rides because they make him feel right in the world, he is such a different kid at Disney if we could we’d live next door!!.

One risk in the area of the chromasome that is abnormal in J is a tumor of the kidneys so at 2 years old when he was diagnosed they started doing ultrasounds and found the kidneys to be smaller and denser than they should be. When he was 3 they did a biopsy and found that he has a prolific cystic disorder(basically his kidneys are filling with micro cysts) so they said he by 5 would need a transplant, but then he didn’t so then they said 6 or 7 then when he was 6 they said 7 or 8 then 9 then they said they have no idea why he didn’t need one yet and( keep in mind that it could change at any time) but now they are thinking late teenager before he needs his transplant. While they were doing the biopsy they found that he also has an unknown auto immune disorder that under the scope looks like lupus but isn’t or he would have been in end stage renal falure…Dr.’s around the world have no idea about it.. (see he’s a lottery kid I tell you) And in a couple years they want to do another biopsy to see what’s going on. And we continue with yearly ultrasounds.

So other than his major stuff he also has hypoglycemia, weight gain problems even though he has 2 cans of pediasure in addition to all of his snacks and meals, allergies, asthma, a malrotation of his intestine and some cognative delays. He is also extra lovable, sweet and truly unique.:love:

…. Phew I think I got it all?! If you have kept reading, sorry this is really LONG!!
 
lastdayofschool2011trio.jpg
 
Here is Justin's (cheesy) reveal video. my MIL wanted to witness the reveal because she was supposed to be going with us as our helper so we saved the big reveal for our family reunion in the mountains. We wanted it to be really special, but how?
I made a large print note and rolled it up into a little scroll which I then placed in a blown out emptied eggshell then I stuffed it with confetti and sealed the small holes with toothpaste then put it into a bag. We took it up to my in laws property and hid it in plain sight a little way into the woods. When we got there to bury a family time capsule my father in law reported seeing Chip and Dale up here talking to the other chipmunks
"I wonder what they were doing all the way out here"?

http://www.youtube.com/watch?v=Fd4gCZIcQq4

:love:
 
Melissa:

So glad you found the Disboards. Maroo on the Wish Trip Forum has been a tremendous help to tons of people as they plan their trips. You will also find a lot of help by reading the TRs and asking questions on the Wish Trip forum.

I loved the "cheesy" video. The credits were impressive. You have some mad skills ! Looking forward to reading about your plans.

~Elisa
 
Melissa:

So glad you found the Disboards. Maroo on the Wish Trip Forum has been a tremendous help to tons of people as they plan their trips. You will also find a lot of help by reading the TRs and asking questions on the Wish Trip forum.

I loved the "cheesy" video. The credits were impressive. You have some mad skills ! Looking forward to reading about your plans.

~Elisa


Thanks! LOl no "mad skills" fill in the blanks and drag and drop in imovies!!
Thanks for the tips I will check them out :)
 
So a bit more of an introduction to us....and lets use pictures because they are worth 1000 words :)



So we took the boys to disneyland in 2009

DSCF8700.jpg


But while we knew it would be a magical experience, we had no idea how grounding it would be for Justin, he was able to go off his usual schedule without issues, he seemed more comfortable, regulated and at ease in his body, how I wish we could live beside DL or WDW.

DSCF3570.jpg

they both look so little!!

anyways back to the intro,
We knew we wanted to have more kids and we had experience with special needs so we felt a calling to adopt a little sister for the boys.

Dressupboyslikeittoo1.jpg


They loved the idea of a sister and 2 days after we brought her home they were begging me to let them play dress up with her, she was thrilled with the idea too!

p.s aren't these going to be great blackmail pic's when they are teens?

I digress..

ourFamilyreunion2011.jpg


Here is a photo from our last reunion with my in laws (including a rare pic of me) Bottom right. I really prefer to be behind the camera, but they insisted i use the auto timer...

to complete the image of our family:
IMG_1411.jpg

we have dogs, no the big one isn't a cow, yes the little one is the boss meet olive and sophie

here is a pic from C's adoption party,
Calliecheckingoutthegoodies.jpg


So, now while we wait for the paperwork to come through I am obsessed with reading some great trip reports.... Shout out to Heather who had me first cracking up by calling her hubbs a Disney Hater publicly on her siggy, then making me alternately happy and mad while reading her TR (they had some really crummy CM's so bad they made the kids cry *sniff*)
and I leave you with a couple more photos just cause

Calliefal2011.jpg


isn't the bottom one very snow white?

and I had to add these 2 of the jedi's in training :)
JustinJeditraining.jpg

Jeditraining.jpg

:love:

Sorry if this is disjointed it's the middle of the night and the kids woke me and I cant get to sleep, that being said my brain may be sleep addled!
 
Thanks for the shout-out, Melissa! You have such a beautiful family!! I LOVE the pictures of the boys playing dress-up with Callie! :rotfl: I have a similar picture of Sawyer wearing a Tinkerbell outfit. Yes, great blackmail pics!
 
So I know I'm still a newbie, and I only found this site a few days ago(although it seems like much longer). but I have a favor to ask at the end of a (longish) note...
As I mentioned above Justin has been followed by the pediatric nephrology clinic since he was 3 years old. The nephrology doctors have been predicting a transplant since his biopsy 7 years ago. At first (if he was a “normal case” to be needed at around 4 or 5 years old but he wasn’t “normal” so when he was 5 then they said maybe at 6 or 7 years, then it changed to when he is 8 or 9yrs old. Then when he was 9 they threw up their hands and said they weren’t sure because Justin is one of a kind. But it looked like he wouldn’t have to worry about a transplant until he was a teenager or maybe if we were super lucky even a young adult. Because he is completely unique from his rare chromosome disorder and one of a kind autoimmune disorder they just didn’t know what made the difference for him. He remained stable rather than following the same path as the usual cases. This is not to say he had normal kidneys, but they were holding their own and there was no reason to think there would be a change yet since they had remained stable for so long.

At this years annual appointment Dr. Pinsk was really happy with how Justin looked, how he was doing, blood pressure etc. but the ultrasounds weren’t done in time for the appointment. The doctor wasn’t worried said he looked great and that he was so happy about how he was doing and he would mail us a report once the ultrasound came in but he fully expected the same as last year….

Well, we got a call this afternoon from the nephrology clinic, seems that not all is ok after all on his ultrasound. the Dr. has ordered follow up blood work as well as extra blood work in case he needs a kidney biopsy. ACCKKK! I feel so blindsided, I thought we had dodged this years bullet.... So what we would like to ask is if you could please pray or if you don't pray, hope the results come back ok.
thank you.
 
ACK!!

So we've had a doozy of a couple days, you may have read the note above this one, well we can now call that part 1. Today we had part two..

The longer story is that I had called J's peds Dr. about spots in his vision, they called me back at 1pm and said the dr.wanted me to bring him to the Stollery Emergency room. I replied in shock "but he's in school" the nurse said you need to bring him to the stollery Emergency room. I said but he's on a field trip until 2! (it was 1:15) she said Dr.harris thinks his retina it detaching you need to bring him to the Stollery Emergency room asap. Well I made arrangements for the little's to be cared for got hub's home from work and we headed into the city I will spare you all of the details but

to sum it up
1 mad dash(well, 1 mad and a 2nd across the city)
2 hospitals
4 1/2 hrs waiting
5 doctors
$15 at Tim Hortons for supper (bagels)
$38.25 In parking :scared1:
Finding out your 10yr olds retina is not detaching after all....

Priceless.



There will be follow ups but his eyes seem to be ok for now. It may be neurological or ocular migraines so we will be tracking the "black and other colored spots lines and half circles" that are interrupting his vision. Keep you posted.
 

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