yinyanggirls
DIS Veteran
- Joined
- Sep 27, 2009
We got "the call"! 
Phoebe's Wish Granter, 
Liz, called this afternoon to say that the dates we discussed are a GO! 
No details yet, as far as flight numbers or times, or what arrangements we need to make for the rental car 
once our WISH week is over, but at least we have DATES!
We will leave April 17th spending one week 
confused3through the 24th?) at Give Kids The World
, continuing the trip on our own and then returning home April 30th. 
I've never used so many smilies but this post definitely deserves them!
I was doing a happy dance when she called and I had to stop because I was panting on the phone and couldn't ask questions. 
So, on to the official Intro...
Princess Phoebe, age 8 -
She is the star of the show, the Wish Child, who is having her wish granted by the Make-A-Wish Foundation. We were referred to the organization by Phoebe's Geneticist after we were given yet another set of negative test results. Normally, negative test results sounds like it would be a good thing, but for Phoebe it means we don't know what is the root of all her difficulties and delays. We have an arsenal of specialists who handle different aspects of her medical needs and they all seem to feel confident that Phoebe has some sort of "syndrome", probably a randomly occurring chromosomal abnormality. She recently turned 8 years old, but is closer to a one year old cognitively, and is still trying to master quite a few of the basic infant/toddler milestones. She is visually impaired due to optic nerve atrophy, she cannot walk unassisted, she is unable to perform self-care tasks, she decided to be half-potty-trained (the messier half, thank goodness!), and she is non-verbal. Medically, Phoebe has been through a myriad of small, uncomfortable, and worrisome situations, but the biggest concerns now are her seizure activity and her growth. Because we don't know what she has, we don't know what to expect for the future and that is scary. I was a little surprised when the representative called from MAW to say she was approved. I am aware that they have expanded their scope to include children with life-threatening conditions, not restricted to terminally ill, but I was still surprised. I thanked her profusely and chose not to think any deeper than that. If this rare opportunity is being presented to Phoebe, I'll help her take it, and enjoy it, to the fullest of her abilities. There is no point in trying to make life fair, that's not what it's about, but it is somewhat comforting that Phoebe will have this special trip, meant just for her, when there are so many other experiences in life that she will not have.
But I have rambled on as usual, and completely digressed, because while all of this "stuff" is about Phoebe, I haven't told you the best stuff. As you can see, she is astonishingly gorgeous. Grown men stop us to say what beautiful crystal blue eyes she has. She loves people, and being in a crowd. She bonds intensely with anyone she spends significant time with, and ends up being the "teacher's pet" every year. She is sweet, innocent, loving, surprisingly stubborn, and yet easy-going.
Her favorite things in life are:
Her family
Gramma Jo (I even get jealous!)
HORSES!!!
lullabies and nursery rhymes
Blue's Clues and Baby Einstein
FOOD!!!
playing in water
Swinging!!!
and being "on the move"
I think I have rambled long enough for one post,
so I will save the other intros for later. If you're reading this, thank you for jumping in. I'll be needing plenty of help to make this a trip that Phoebe will love!
Phoebe's Wish Granter, Liz, called this afternoon to say that the dates we discussed are a GO! No details yet, as far as flight numbers or times, or what arrangements we need to make for the rental car once our WISH week is over, but at least we have DATES! We will leave April 17th spending one week confused3through the 24th?) at Give Kids The World, continuing the trip on our own and then returning home April 30th. I've never used so many smilies but this post definitely deserves them!
I was doing a happy dance when she called and I had to stop because I was panting on the phone and couldn't ask questions. So, on to the official Intro...
Princess Phoebe, age 8 -
She is the star of the show, the Wish Child, who is having her wish granted by the Make-A-Wish Foundation. We were referred to the organization by Phoebe's Geneticist after we were given yet another set of negative test results. Normally, negative test results sounds like it would be a good thing, but for Phoebe it means we don't know what is the root of all her difficulties and delays. We have an arsenal of specialists who handle different aspects of her medical needs and they all seem to feel confident that Phoebe has some sort of "syndrome", probably a randomly occurring chromosomal abnormality. She recently turned 8 years old, but is closer to a one year old cognitively, and is still trying to master quite a few of the basic infant/toddler milestones. She is visually impaired due to optic nerve atrophy, she cannot walk unassisted, she is unable to perform self-care tasks, she decided to be half-potty-trained (the messier half, thank goodness!), and she is non-verbal. Medically, Phoebe has been through a myriad of small, uncomfortable, and worrisome situations, but the biggest concerns now are her seizure activity and her growth. Because we don't know what she has, we don't know what to expect for the future and that is scary. I was a little surprised when the representative called from MAW to say she was approved. I am aware that they have expanded their scope to include children with life-threatening conditions, not restricted to terminally ill, but I was still surprised. I thanked her profusely and chose not to think any deeper than that. If this rare opportunity is being presented to Phoebe, I'll help her take it, and enjoy it, to the fullest of her abilities. There is no point in trying to make life fair, that's not what it's about, but it is somewhat comforting that Phoebe will have this special trip, meant just for her, when there are so many other experiences in life that she will not have.
But I have rambled on as usual, and completely digressed, because while all of this "stuff" is about Phoebe, I haven't told you the best stuff. As you can see, she is astonishingly gorgeous. Grown men stop us to say what beautiful crystal blue eyes she has. She loves people, and being in a crowd. She bonds intensely with anyone she spends significant time with, and ends up being the "teacher's pet" every year. She is sweet, innocent, loving, surprisingly stubborn, and yet easy-going.
Her favorite things in life are:Her family
Gramma Jo (I even get jealous!)
HORSES!!!
lullabies and nursery rhymes
Blue's Clues and Baby Einstein
FOOD!!!
playing in water
Swinging!!!
and being "on the move"
I think I have rambled long enough for one post,
so I will save the other intros for later. If you're reading this, thank you for jumping in. I'll be needing plenty of help to make this a trip that Phoebe will love!
I'm so excited to start organizing what I've learned so far. I had one last fun task to complete before I sign off....I created our ticker! Funny how such a random little thing feels so important. 
When you get ready to post it again..go back to the pre-trip forum, click on "new thread" and there you go!
ok ive gotta get back to work!! its hard with so much excitement!!!
I know some of us are learning together, and others have BTDT or have been researching for months already, so it will be great to have you as a resource. 
