In Our Daughter's Eyes - Emily's Wish Trip Dec.10-Jan.11 ALL DONE PICS ADDED p.16!

Emilyswish

Mouseketeer
Joined
Oct 28, 2010
This is our Emily.
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Like all children, Emily is a miracle. But the fact that she is even here with us today is an even bigger miracle. Most babies with a condition like Emily's do not even survive pregnancy or birth. She has an extremely rare chromosome disorder called an unbalanced translocation of chromosomes 7 and 9 and there is little to no data on how this condition will affect her life or how it has affected others. She is also Baby C of our set of triplets. Her brother, Carter, her sister, Brenna, and Emily were born in August of 2007 at almost 34 weeks gestation! Their older brother is 7 year old Drew.

Since 4 months old, she has endured a devastating seizure disorder which has left her functioning at the level of a 6-7 month old, and many other medical conditions which effect her organs and systems. She is also cortically blind, which means she can not see the way people with normal vision see. From what they can tell us, she has awareness of lights, shadows, and possibly objects, though her brain can not understand what she is seeing. You can read more about Emily's story on our family blog (and also my husband's full trip report) at www.wecouldnotaskformore.blogspot.com .

Emily is also non-verbal, so we knew we would be making her "wish" for her. And because we do not know how long we will have her with us (though we hope it's a very long time!), we wanted to make her wish as soon as possible. We considered other wishes, but it came down to wanting for Emily what every other 3 year old little girl would want. Since Emily is a triplet (a sister, Brenna, and a brother, Carter), we felt that what Brenna loves would be very close to what Emily would love too. And she is all about the Princesses!! :) Since Emily had been showing some improvement in her visual awareness, especially to lights, we (and the MAW volunteers) thought Disney World over Christmas/New Years would be an amazing thing for her to "see".

DH and I had never been to DisneyWorld with our children - only separately when we were younger - and we knew how special it would be to see this magical place through our children's eyes, but it would be even more special through Emily's eyes.

A while ago now, my DH recorded a song for Emily - In My Daughter's Eyes


Click Emily's picture to go to the video montage and song for Em:


:lovestruc Our Wacky and Wonderful Wish Week in the World!! :lovestruc

Monday, December 27, 2010: Traveling after a blizzard, arrival at Give Kids the World

Monday, December 27, 2010 (continued): First Night and Orientation at GKTW

Tuesday, December 28, 2010: Magic Kingdom Part 1

Tuesday, December 28, 2010: Magic Kingdom Part 2 - Emily's First Ride with Video

Tuesday, December, 28, 2010: Magic Kingdom Part 3 - Wish Lounge and Early Exit

Wednesday, December 29, 2010: Epcot morning - Storybook Breakfast At Akershus

Wednesday, December 29, 2010: Epcot - Akershus Part 2

Wednesday, December 29, 2010: More Epcot

Wednesday, December 29, 2010: An (abbreviated) evening at DHS

Thursday, December 30, 2010: Morning with the Mice (and friends)

Thursday, December 30, 2010: More Disney friends, USIOA, WWoHP, a wand chooses Drew!!

Thursday, December 30, 2010: Christmas party at GKTW
 
Our flight was scheduled for the Monday morning after Christmas, but there was an impending snowstorm coming our way on Sunday! I had been checking our flight status VERY often and it continued to say "on time" through early Monday morning so we woke up before the sun to get ready for our ride to pick us up at 7am.

At 7am, we received a call from our car service company that due to a State of Emergency our driver could not get on the road to get us on time. He was leaving then and would get to us as soon as possible.


Here we are, ready an hour early, waiting for our ride! Emily, who likes to sleep in, was dressed, but was not ready for photos! ;)
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I just finished reading your DH Blog about the trip and I was HOPING you were still going to write a TR yourself...:woohoo: I wanted more! popcorn::popcorn::popcorn::
I am excited to read things from your perspective, I was truly sorry to hear of all of the illness. You all certainly made the best of everything though! :thumbsup2 AWESOME Attitudes! :love:
 


yay!! she sounds like a very special girl! And what better place to celebrate her and your growing family than at Disney!!
 
Subbing too. popcorn::

I didn't want to read your DH blog because I wanted to be surprised when you did your TR (I'm probably the only one who didn't read it). :rotfl: Please tell him not to take it personally, I just like surprises.

Are those home made stockings above your heads in the photo? I like them, they are really cute.
 
YAY!!!!! Cant w:thumbsup2ait to hear more about the trip!!

You're first! I thought you might be! ;)

Can't wait to read more:)

I promise there will be more! :rotfl2:

I just finished reading your DH Blog about the trip and I was HOPING you were still going to write a TR yourself...:woohoo: I wanted more! popcorn::popcorn::popcorn::
I am excited to read things from your perspective, I was truly sorry to hear of all of the illness. You all certainly made the best of everything though! :thumbsup2 AWESOME Attitudes! :love:

Aww, thanks so much. It definitely stunk having so many get sick, but we really were able to make the best of it!

Yeah I can't wait to read.

Thanks for reading along! popcorn::

Yay! Subbing!

Hello! :yay:
 
yay!! she sounds like a very special girl! And what better place to celebrate her and your growing family than at Disney!!

Thank you, we certainly think so. :lovestruc It was the perfect place for us to go.

Yah for the TR :) Can't wait to read more !

Hey there! :woohoo: Do you have a PTR yet?? ;)

:woohoo: Page 1! Now to go back and read.....

Nice work! Though, I think we're still on page 1 . . . :rolleyes1

I'm in. I loved your DH's blog report, can't wait to see more!!!!

Hey thanks! Glad to have you!

Subbing too. popcorn::

I didn't want to read your DH blog because I wanted to be surprised when you did your TR (I'm probably the only one who didn't read it). :rotfl: Please tell him not to take it personally, I just like surprises.

Are those home made stockings above your heads in the photo? I like them, they are really cute.

That is some serious self control!! I will try not to drag it out too long, I've just been having trouble getting on here lately.

The stockings were store bought. I think it was actually supposed to be a table runner, but since there are six of us and six stockings I hang it up! :laughing:
 
I just found your trip report. We were down there during some of hte same dates! I used to volunteer at GKTW when I worked for Disney, it's an aamzing place. I cant wait to hear your impressions. Your family is adorable. I can't even imagine 3 year old triplets. They must keep you on your toes!
 
Great start...can't wait to read more!

:welcome: I saw you were picked for the big give too! How awesome! Thanks for reading!

Subbing! I read your husbands blog and can't wait to hear more!

:welcome: He's a lot faster than I am with the updates! Life keeps getting in the way!

I just found your trip report. We were down there during some of hte same dates! I used to volunteer at GKTW when I worked for Disney, it's an aamzing place. I cant wait to hear your impressions. Your family is adorable. I can't even imagine 3 year old triplets. They must keep you on your toes!

:welcome: Both Disney and GKTW made a lasting impression on me. I'm not sure I'll be able to truly express how wonderful everything was, but I'll sure try!

I'm here! Can't wait to hear more about how your trip went.

:welcome: Hey there! I can't wait to get myself in gear and tell you either! :lmao:
 

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