Princess Phoebe's Pre-WISH-Trip Report (arriving in MK 4/17/10)

Discussion in 'Pre-Trip Reports and Plans' started by yinyanggirls, Nov 16, 2009.

  1. yinyanggirls

    yinyanggirls DIS Veteran

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    We got "the call"! :cheer2: Phoebe's Wish Granter, :wizard: Liz, called this afternoon to say that the dates we discussed are a GO! :yay:No details yet, as far as flight numbers or times, or what arrangements we need to make for the rental car :confused: once our WISH week is over, but at least we have DATES!:woohoo: We will leave April 17th spending one week :-)confused3through the 24th?) at Give Kids The World:flower3:, continuing the trip on our own and then returning home April 30th. :goodvibes

    I've never used so many smilies but this post definitely deserves them!:dance3: 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. :lmao:

    So, on to the official Intro...

    Princess Phoebe, age 8 -
    [​IMG]
    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. :cutie: 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"
    [​IMG]
    I think I have rambled long enough for one post, :surfweb: 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!:lovestruc
     
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  3. pacrosby

    pacrosby DIS Veteran

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    Oh Melissa.........I get it; I hear ya; so many of us who will read this understand 100%. Sometimes it's best to accept the gifts we receive and try not to overanalyze. I'm glad to hear you've got the ball rolling. Let the games begin!!!!



    Pamela

    Matty's Wish Trip http://disboards.com/showthread.php?t=2325607
     
  4. Momofwishkid

    Momofwishkid DIS Veteran

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    Yay Melissa!! Im so happy you have your dates. Phobe is beautiful and just looks like she has so much happiness in her. Cant wait to follow along.
     
  5. chrissid7

    chrissid7 Mouseketeer

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    wooooohoooooo!!! I LOVE DATES!!!!!!!!! lol Im so glad you got them now you can put all of this newfound knowledge to use!! :dance3:

    I am so happy to be able to put a face with a name and omg what a beautiful lil princess face!!!!

    I still dont have a face with yours though soooo wheres your pic huh huh huh? LOL I didnt post mine yet either.
     
  6. yinyanggirls

    yinyanggirls DIS Veteran

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    Thanks for following Pamela, Jennifer and Chrissi! :wave2: 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. :goodvibes (oh, and can I say I was shocked when I finished it and it read "5 months until...". I knew we were less than 6, but 5 already! I told you Pamela, I'd be a total wreck with your timeline!!!)

    Okay, I'm going to try and squeeze in a Table of Contents here, so I can go back and print it out as a journal for myself, and for any last minute readers who feel daunted by reading through 50 pages to catch up.

    You've met the star, here's the supporting cast
    More pics of the circus, I mean, family
    Video of the girls being silly
    This post pretty much sums up my husband's participation in the trip planning
    Coming up with a plan for the "after-Disney" week of our trip
    Tessa's bday update
    Shopping for the trip and medical updates
    Busy weekend update/Phoebe gets an owie
    Mickey Head Mania, it was Jordan's Fault
    Christmas Festival of Lights with Make-a-Wish
    Christmas Day at the Movies
    BIG news and still no shoes
    Our first, last and only Disney Movie Night
    Shopping...
    Message from Tessa to Big Give Fairies
    Gifts from fairy Margaret (autograph books, etc)
    A (sort of) final itinerary
    Fairy Godmother goofs
    Adrenaline rush for me and the girls
    Additional cast member for week two
    couple more pics
    Flight info...through Chicago???
    Hairy situations
    Count to 12?
    Updates
    Grandma Great
    Mini-Funeral-Trip-Report
    Pixie dust and jammies from Dawn and Caitlin
    Mini-Minnie dress from Jessica
    Pixie dust from Lynn
    Pics of jammies
    I'm getting a new camera!!!
    Tiana outfits from Crystal
    Couple more pics
    Movie list
    Sleeping Beauty dress from Heather
    From Tessa to Tessa
    WISH shirts from Kristine
    Animal Kingdom ensembles from Anita
    Packing update
    Pixie dust from Andrea
    Fun for the Queen and King from Andrea
    Give a Day, Get a Snafu?
    Tinkerbelle dress from Nini and Brianna
    Sleeping Beauty dresses from Tricia
    Hula time from Melinda
    Sea World dresses and cute bows from Fairygoodmother and Poohnpiglet
    Lady and the Tramp and Blue's Clues outfits from Heather
    101 Dalmations dress from Daniel family, Coke hat for Daddy, and Tessa's crayon roll-ups and books from Mary
    So, I get TWO new cameras? and counting down
    Sarah's gorgeous quilts, fun Ts and mouse ear barrettes, plus fun mail
    Bows and headbands from Krysta
    Welcome packet from GKTW
    Flashback - a day at Disneyland 03/09
    Flashback part 2
     
  7. thatkid

    thatkid Mouseketeer

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    hi!
    I was so excited when i got my dates so i could make my ticker too :rotfl:
    I found out i was getting a wish in may, and there's only 15 days left. :yay:
    the time goes by so fast, yet so slow haha.
    i'm excited to hear more!
     
  8. motherof4greatkids

    motherof4greatkids [IMG]http://i595.photobucket.com/albums/tt32/codym

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    You have a beautiful family i hope all your wishes come true.
     
  9. pipersmom

    pipersmom DIS Veteran

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    Hooray!! For dates..and starting a PTR! I can't wait to see all your pics 'cause I know what a great photographer you are from reading your blog! Can't wait for the next installment!
     
  10. pipersmom

    pipersmom DIS Veteran

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    Tina..just click to edit your post, then delete all the words and maybe comment on Melissa's post to replace them ;) When you get ready to post it again..go back to the pre-trip forum, click on "new thread" and there you go!
     
  11. maroo

    maroo DIS Veteran

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    Tina - I sent you some instructions in a Private Message about how to start a pre-trip report and how to edit the post above. A Moderator may come by and delete it for you, though. :thumbsup2


    Princess Phoebe is so cute! :)

    Lauren is going to be tickled pink that you have started a pre-trip report - Lauren is convinced that Phoebe looks just like she did when she was little and "loves her already."

    I will link this to the Wish Trippers Unite first page, too...so people can find ya! :) (Although it looks like they already have! :)
     
  12. motherof4greatkids

    motherof4greatkids [IMG]http://i595.photobucket.com/albums/tt32/codym

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    Hi im new to all this my name is Tina i just wanted to say hi and i cant wait to hear all about your trip
     
  13. chrissid7

    chrissid7 Mouseketeer

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    I felt like such an official Dis'er when I made my ticker! That really got the ball rollin for me! :cool1: ok ive gotta get back to work!! its hard with so much excitement!!!
     
  14. StefaniLyn

    StefaniLyn DIS Veteran

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    What a great start to your trip report! Phoebe is absolutely beautiful and I can't wait to read more about the rest of your family as well as your plans!! There were several parts of Phoebe's story where I literally could replace her name with Bella's. I understand the 'negatives' from genetics. We go through it once each year with the same frustration. Our doctors continue to tell us our daughter is literally one of a kind! Sounds like the same is true for Phoebe! I hope that you eventually find some answers so you know what the future may hold! Congrats again on your wish and your dates!
     
  15. MomTo4+more

    MomTo4+more Mouseketeer

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    She is so precious. I am excited to follow along as you plan. I just thought today that now that our wish trip is over, I need something fun to plan. Your five month wait will go so quickly!
     
  16. yinyanggirls

    yinyanggirls DIS Veteran

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    Thanks for reading guys! I think it would really stink to make a PTR/TR and have no one reading. :sad1: 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. :idea:
     
  17. yinyanggirls

    yinyanggirls DIS Veteran

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    So now you've met my little angel. [​IMG]

    Let me introduce you to my little devil. :lmao:
    [​IMG]

    Tessa is the little "big" sister. She has a unique position as the youngest chronologically but the oldest cognitively. Other than her exquisite beauty, she is opposite of Phoebe in every possible way. That is where my email address and screen name come from - yin yang girls. Tessa was born an independent woman. She is always on the move (a specialist who saw her at 2 months old told me to expect an ADHD dX when she is older and I do believe she's right). She has never wanted to be cuddled unless it is on her terms. She is stunningly smart, talking well before one year, walking at 10 mos, reading and writing names and a couple of small words at barely 3, strong and agile. I joke that between my two kids I have no idea what "normal" is and she has helped me to realize that it just doesn't matter. The last 4 years have been the longest four of my life! But I do look forward to watching her grow into the amazing person I know she'll be.
    [​IMG]

    Now for Daddy. He's the best Daddy in the world. We have the letter from Texas Roadhouse to prove it. :thumbsup2
    [​IMG]
    Phoebe "wrote" a letter about how wonderful her dad is and we entered it in the restaurant's Father's Day contest. (I did inform the hostess that I wrote it, but I was pretty sure it was what she would say) Dad won a free dinner and so did Phoebe! Yum! We love that place and Tessa affectionately calls it the "peanut restronk". Daddy works long hard hours in law enforcement in order to provide us with good benefits, a house big enough to navigate with a wheelchair and a van big enough to transport said chair. But don't let him fool you. He loves what he does and longs to go back to work "to relax" after any extended time off. He is just a kid at heart and loves playing "Hide and Seek" with the bad guys as he tells Tessa. When he's not having fun at work, taking care of girls at home, he loves building things and has earned the nickname Tim the Tool Man by his multiple ER visits.

    So that leaves me. Mommy.
    [​IMG]
    Wow, that blur technique really does wonders for the wrinkles!;) In my BC life (Before Children, that is) I was an aspiring photographer with a pretty decent clientèle built up. Then I took an 8 year maternity leave. :lmao: I have been trying to get my name out there since we moved to our newest neighborhood (we've moved 4 times in 5 years but plan to be here for at least a few). In more recent years I have volunteered with a national adoption organization, organizing the training classes required by hopeful parents to be approved to adopt through the agency that sponsored the organization. Basically it was a support group for previous and hopeful adoptive parents, birthparents and adoptees. Along with the classes I spearheaded social and political events and helped compile a monthly newsletter. Since both of our girls came to us through adoption I have a strong passion for the whole process. Phoebe came to us through a planned adoption and I just think her birthmother is a true hero. Tessa came to us through state foster care and unfortunately we have never met any of her birth family. We were placed with both girls straight from the hospitals they were born in and I am so grateful for the ways they have changed my life. I love to read when I have time. I love movies. I love all kinds of music and still force my husband to go dancing with me occasionally. I spend way too much time on the internet, but have made some wonderful friends through the years. I am enjoying getting to know everyone here!

    So here are a few more shots of our crazy family that you might enjoy.
    Me and the girls riding around Tombstone AZ in the Mail Coach while Daddy enjoys a noisy gun show.
    [​IMG]

    The girls playing during a quick stop at the store. It's hard not to be noticed everywhere we go with Phoebe's hot pink wheelchair and Tessa's vivacious voice.
    [​IMG]

    The girls on the apple scale. I make them all go apple picking every fall. They always love it once they get there.
    [​IMG]

    Phoebe loves getting out and doing stuff. Doesn't really matter what.
    [​IMG]

    Tessa is a character; always entertaining. I have so many fun pics of her and none of them are posed. LOL
    [​IMG]

    The girls love visiting family in CA. Tessa begs to go back to the beach. Phoebe does not love the beach so much, but lots of other fun things in CA are good. Like Grandparents, Disneyland, warm pools and fully accessible playgrounds. I'm trying to get our town to add at least a special swing, but it's slow going.
    [​IMG]

    And I'll leave off with one last sweet one of the girls. They are so fun. Tessa is almost four and starting to really interact with Phoebe now. She runs out to meet her bus and likes to ride down on the chair lift with her. She will put on a Baby Einstein for her sister even though we all have them memorized. Tonight at dinner Phoebe grabbed Tessa's hand (she loves hands, always has, and claps the hands together) and Tessa said to her "Nice to meet you Phoebe. I missed you!".
    [​IMG]
     
  18. Momofwishkid

    Momofwishkid DIS Veteran

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    Your girls are beautiful, I love the pic of them at the store. Shopping is always fun isnt it!
     
  19. chrissid7

    chrissid7 Mouseketeer

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    They are BEAUTIFUL!!! Your story made me misty until the end and that very last part made me just all out sob!!! (in a good way). You are such and inspiration and what a lucky man and lucky girls to have you. Dad sounds pretty great too!!! SO glad to "meet" you and your family! :hug:
     
  20. pacrosby

    pacrosby DIS Veteran

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  21. kellyw8863

    kellyw8863 DIS Veteran

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    Yay for dates! You have such a beautiful family. I'm looking forward to following you on this journey!

    Kelly
     

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