Emilyswish
Mouseketeer
- Joined
- Oct 28, 2010
This is our Emily.
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:
Our Wacky and Wonderful Wish Week in the World!!
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
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:
Our Wacky and Wonderful Wish Week in the World!!
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