Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Disney Trip Planning Forums > Disney Trip Reports > Completed Trip Reports
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





 
 
Thread Tools Rate Thread Display Modes
Old 07-11-2008, 11:02 PM   #1
twinmum
DIS Veteran
 
Join Date: Jul 2006
Posts: 787

Mark's Starlight Wish Trip - Nov 2008

Hello! After spending many weeks enjoying other people’s pre and post trip reports, I thought it was about time that I introduce our family. I’ve read so many great trip reports, I just hope I can do mine justice!

Here’s our family:

Me: Alison, a mostly stay-at-home mother who still does some consulting work on the side. Although I spent 22 years in public accounting, nothing has been a more fulfilling role than my 9 years as a mother to our wonderful boys. Yup, that was 22 years in accounting, and I didn’t start after elementary school! Do the math, and you won’t be surprised to hear that I turned 47 recently. How did that happen?!? I can’t be 47…can I?

DH: Peter, likes to point out that he’s the younger man, but as he turns 46 in September, that doesn’t hold water. Also a Chartered Accountant (we’re from Canada), he now works in the mutual fund industry. He’s an avid cyclist…rode >10,000 kms –whoops, make that 6,000 miles – last year. He’s a terrific Dad who has been so supportive and loving to our little premies. Didn’t think he’d like WDW that much for our first trip in 2006, but was pleasantly surprised…enough that he agreed to a Disneyland trip last December.

DS’s: Our twin boys, Douglas and Mark. Mark is our Wish child, although when I think of what they went through upon birth, Douglas is pretty deserving, too. The boys will be turning 10 on October, just over a week before we leave for our Wish Trip.

We're heading to Orlando, especially WDW, on November 1, 2008. We're spending a week at Give Kids the World, the most amazing place for families of Wish kids enjoying their special time together. We're also adding on 3 nights at our own cost to round out the trip. Mark's describes this trip as his "unfinished business in Orlando" trip. More on that later!

Douglas and Mark were born over 3 months early, at 26 weeks, each weighing just over 2 lbs. For those of you with premies, it was really a very typical, up and down, experience. We saw most of the premie issues: respiratory issues with extended intubation, intraventricular hemorrhage, PDA’s, retinopathy of prematurity, aspiration pneumonia, and then all the time to learn to feed and grow, baby grow. Mark’s lung issues were more severe initially – Peter was there as Mark struggled as he had bleeding in the lungs. With Mark failing, there was a stat call for doctors, respiratory techs…and the crash cart. Thanks to a specialized ventilator, he pulled through. He also had a “brain bleed”, leading to a ludicrous moment we’ll always remember – being told Mark had this bleed, that they didn’t know how severe it was, they were doing a head ultrasound to assess, and that we should consider what we would like them to do in the case of poor results…and then the doctor said: “well, it’s just about lunch time. Maybe you can get something to eat while we do this testing”. Yup, as if I ever dreamed I could ever eat again at that point?!?

Douglas took us down several frightening paths and then would pull back, right at the abyss. And he just loved respiratory support, and only finally came off it once his brother left the hospital. It was like he realized that if he could just give up that low flow, he could be back together with his twin. And 3 days later, he was – and other than ongoing lung issues, he hasn’t looked back.

When we left the hospital after 3 ½ months, we were hopeful that all was well. After 6 months at home, it was clear that Mark’s body just didn’t move the same way as Douglas’. An NICU follow up discussion confirmed that Mark had cerebral palsy.


Fast forward to today:

Mark and Douglas are entering Grade 5 at our local public school. They are bright, interesting fellows who make us proud. Mark’s CP is assessed as “moderate”, and he uses a walker to get around most of the time. He’s working hard to master quad canes, but is still building his confidence. He is age appropriate re: his cognitive, social, verbal skills.

Mark had severe gastroesophageal reflux and eventually had surgery when he was 4. In the meantime, he had been deemed “failure to thrive” and a feeding tube was placed when he was 3 to supplement his nutrition. He still has the feeding tube, because at age 9 ½, he weighs a whopping 44 lbs! Every night, I hook up his feeding which runs 2.5 hours while he’s sleeping. I’ve mastered sleeping on the floor in the hallway outside their room, getting up at 1:30 to flush and switch it off, then climbing into my proper bed. OK, well sometimes I start the tube and come back downstairs to see what’s new on these boards, which is why I’m often posting late at night.

As well as some minor surgery both boys had when they were 1, Mark has also had surgery to correct his drooling (controlling this is a motor skill that ws impaired by his CP, redirecting the saliva flow has eleiminated it completely), and has botox injections to manage his spasticity (yup, botox like the wrinkles, but I'll never be able to get it because as Mark says "I can't believe people would actually choose to go through those painful injections just to look younger!"). For Mark, a botox session means 15-20 injections. His weeks include daily stretching and physio with us, as well as 2 physio appointments.

Mark does have real issues with stamina, and we need to make the most of our time in the parks because his energy can fizzle fast. The GAC has been so helpful so we can make the most of our days. We need to be sure we don’t push too far, or he’ll wind up back in the hotel room, not feeling well. We know – it’s happened both trips so far, and we’re determined to have everyone stay healthy this trip!

I haven’t tried posting pictures yet, but here’s a link to a recent newspaper article about Mark returning to Camp Awakening, an overnight camp for children with physical disabilites: http://www.thestar.com/FreshAirFund/article/451319
Admittedly, by the time this pic was taken, Mark was “done” with smiling for the camera!

Well, I could say so much more, but this is already so long! In my next post, I’ll tell you about how Mark's wish is being granted by the Starlight Starbright Children’s Foundation of Canada!

Alison

Last edited by twinmum; 07-12-2008 at 01:00 PM.
twinmum is offline  
Old 07-12-2008, 04:24 PM   #2
Bill_Lin
Grateful to God
 
Bill_Lin's Avatar
 
Join Date: May 2007
Location: Great Northwest
Posts: 747

Great TR Start

Alison,

Your TR is off to a great start. I love your newsletter article and picture.

http://multimedia.thestar.com/images...3adce4946.jpeg

The must be a great photographer. We look forward to hearing more.

Bill
Bill_Lin is offline  
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 07-12-2008, 07:53 PM   #3
twinmum
DIS Veteran
 
Join Date: Jul 2006
Posts: 787

Thanks, Bill. I was starting to worry that no one was reading...
__________________
Sorry, there is just a Pre-Trip Report for Mark's Starlight Wish Trip:
November 2008: http://www.disboards.com/showthread.php?t=1883215
With a brief report on Mark's wonderful Wish Trip!
twinmum is offline  
Old 07-12-2008, 11:30 PM   #4
Bill_Lin
Grateful to God
 
Bill_Lin's Avatar
 
Join Date: May 2007
Location: Great Northwest
Posts: 747

Readers

A lot of people read all the TR updates, but don't always post. Thanks for the reminder of how important that is.

Bill
Bill_Lin is offline  
Old 07-13-2008, 05:48 AM   #5
bex271
Mouseketeer
 
bex271's Avatar
 
Join Date: May 2007
Location: alabama
Posts: 446

Allison,
I love the picture, i'm going read the article in a little bit, but I just wanted to say that mark is so cute shooting his water gun.

becca
bex271 is offline  
Old 07-13-2008, 06:36 AM   #6
Robin+5
Mouseketeer
 
Join Date: Jun 2008
Location: New Hamshire
Posts: 129

I'm reading

I am reading your TR. look forward to hearing more. Great picture

Robin
__________________
Robin+5 is offline  
Old 07-13-2008, 09:20 AM   #7
Iluvmickeymouse!
Proud mama to a DD who beat HLH
 
Iluvmickeymouse!'s Avatar
 
Join Date: Jun 2005
Location: Iowa
Posts: 612

I'm here too!! Just a little late.. Great start!!!
Iluvmickeymouse! is offline  
Old 07-13-2008, 07:15 PM   #8
Bill_Lin
Grateful to God
 
Bill_Lin's Avatar
 
Join Date: May 2007
Location: Great Northwest
Posts: 747

More Pictures

How about posting some more pictures? It would be great. How are your plans coming?

Bill
Bill_Lin is offline  
Old 07-13-2008, 10:37 PM   #9
GoofyDoo
Missing Orlando...
 
GoofyDoo's Avatar
 
Join Date: May 2008
Location: Texas
Posts: 340

I'm here, too, Alison!! I love your PTR so far--and especially the pic. Your two angels deserve this trip, as do their parents!!! I'm so happy y'all are getting to go.
__________________
GoofyDoo is offline  
Old 07-13-2008, 11:22 PM   #10
twinmum
DIS Veteran
 
Join Date: Jul 2006
Posts: 787

I posted this on the Wish Trippers thread too - I did upload some pix to photobucket, but can't find instructions to post themhere...anyone have words of wisdom for me? I know there were instructions around here someplace...!!!

Alison
__________________
Sorry, there is just a Pre-Trip Report for Mark's Starlight Wish Trip:
November 2008: http://www.disboards.com/showthread.php?t=1883215
With a brief report on Mark's wonderful Wish Trip!
twinmum is offline  
Old 07-15-2008, 11:31 AM   #11
bigdisgrandma
Mouseketeer
 
Join Date: May 2008
Location: West Jordan, Utah
Posts: 372

Quote:
Originally Posted by twinmum View Post
I posted this on the Wish Trippers thread too - I did upload some pix to photobucket, but can't find instructions to post themhere...anyone have words of wisdom for me? I know there were instructions around here someplace...!!!

Alison
Alison,
The best instructions I have found are in the Disboutiquers first page of their thread. Very helpful about a lot of things that were hard for me to figure out. I think I can figure out how to add the link for you and hopefully you can find some help there.

http://www.disboards.com/showthread.php?t=1885666

Love the start to your report. Can't wait to hear more!

Denise
__________________
OKW Aug 1994, Sept 2008
All Star Sports With 14 people Aug 1997
Marriott Residence Inn May 2000, Feb 2003, Mar 2005, Mar 2006
Port Orleans Riverside June 2002
Pop Century Nov 2005, Jan 2008

Karlyn's Wish is Coming True
http://www.disboards.com/showthread.php?t=1868674
bigdisgrandma is offline  
Old 07-15-2008, 03:53 PM   #12
Bill_Lin
Grateful to God
 
Bill_Lin's Avatar
 
Join Date: May 2007
Location: Great Northwest
Posts: 747

Instructions

Quote:
Originally Posted by bigdisgrandma View Post
Alison,
The best instructions I have found are in the Disboutiquers first page of their thread. Very helpful about a lot of things that were hard for me to figure out. I think I can figure out how to add the link for you and hopefully you can find some help there.

http://www.disboards.com/showthread.php?t=1885666

Love the start to your report. Can't wait to hear more!

Denise
Oh my Goodness Denise! That is a great link. Thank you for posting it. So MANY folks have asked questions about this issue.

Bill
Bill_Lin is offline  
Old 07-18-2008, 02:51 PM   #13
HeatherN
Dreaming of Disney
 
HeatherN's Avatar
 
Join Date: May 2008
Location: upstate NY
Posts: 293

Hi Alison! Great start to your PTR. Mark is such a cutie! I can't wait to hear about all your plans. The waiting is the hardest part!
__________________
Heather-Mom to Hannah(9) Wish kid and Logan(5) Wife to Paul.

When you wish upon a star- Hannah's Make a Wish trip report: http://www.disboards.com/showthread.php?t=1852434
HeatherN is offline  
Old 07-18-2008, 03:14 PM   #14
ForeverDance
Mouseketeer
 
ForeverDance's Avatar
 
Join Date: Jan 2007
Location: Ontario, Canada
Posts: 424

Just popping in to say hi I'm reading along and can't wait to hear more.
__________________
August 2009 - POFQ /w DxFD
September 2008 - CSR /w DxFD (Adult only anniversary trip)
August 2007 - ASMo /w FD
July 2006 - POFQ
ForeverDance is offline  
Old 07-19-2008, 10:54 AM   #15
twinmum
DIS Veteran
 
Join Date: Jul 2006
Posts: 787

Hello...I am finally back again! I think I may have figured out how to post pictures, so I am going to try here.

In honour of our Wish child, I'll post my very favourite picture of him first. Here's Mark at a barrier-free cross-country meet last fall. I was running along beside him, just in case he went off balance. The father of his special needs assistant from Grade 2 was there, recognized him and took this beautiful shot. All I had to do was crop me out, and voila! A lovely shot! Just look at the joy in his face! (OK, can you tell that I'm missing him now that he's been away at overnight camp - he left on Tuesday...!!!)



I've got more pictures, but I'm going to check this one worked first. Then you can meet the rest of the family!

Alison
__________________
Sorry, there is just a Pre-Trip Report for Mark's Starlight Wish Trip:
November 2008: http://www.disboards.com/showthread.php?t=1883215
With a brief report on Mark's wonderful Wish Trip!
twinmum is offline  
 



Thread Tools
Display Modes Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 05:43 AM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.

You Rated this Thread: