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Old 09-19-2013, 11:53 AM   #1
terratalking
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Wishing to be Part of "Her" World - Kendall's MAW trip to meet Ariel

SO EXCITED!!!
We found out Kendall was approved for Make A Wish yesterday after her doctor put in the referral when Kendall was discharged from a month-long stay in the PICU in August that nearly took her life.
So much backstory I need to fill in - but by way of quick intro -
Kendall is almost 5 years old and has battled mitochondrial disease since birth. She has lived in and out of hospitals her entire life, and along with the effects on her, her three older sisters are also thrown in that mix missing mommy, never knowing if sissy is really really sick, or just kind of sick.
Her list of diagnoses that have come as a result of mito is long and full of big words - but essentially, her GI tract is essentially shutdown, leaving her dependent on a central line (permanent IV) for nutrition and medication. Her bladder has sustained a lot of nerve damage and rarely functions appropriately anymore so she drains urine through a hole surgically created in her abdomen. She has a GJ tube in place through which some meds and some pedialyte is given in an attempt to keep some functionality and protect her liver. She has some developmental delays and is in physical and occupational therapy 3-4 hours a week.
Over this summer she suffered two back to back life-threatening sepsis infections and was in the PICU and intubated for weeks at a time. The first one had us all scared, but she bounced back amazingly.

when it happened again four weeks later, everyone was beyond scared that this would be it. Her bounce back was no less amazing, but it was much slower in coming. The last one took a lot out of her. Her doctor had to sit me down and have a very hard talk with me that Kendall will likely not survive another infection of this degree. The infections are coming from inside of her own gut - and there is not much we can do to prevent this from happening. We are doing what we CAN do though for her, and hoping and praying this buys us more time.
at the end of the day, that's all anyone really can ask for. More time.


As part of that conversation, her doctor said it was time to send her on her make a wish trip. All she has ever talked about is Cinderella, and more recently Ariel.
she watches those movies nonstop in the hospital, even when she is in a coma and intubated, we keep those movies playing so she can hear the music in her faraway dreams.
Right before she crashed this last time, her daddy was trying to keep her conscious, keep her talking so I could make it back to the hospital in time to see her and tell her i love her (we live three hours away from the hospital). Some of her last words to him at that time were "daddy, I just want to have red hair like Ariel. She's so pretty. I want to be just like Ariel!"
So when she recovered, and came home - red hair she got!
She tells people now that her name IS Ariel.


So even though I have been torn on what this really means - to qualify for a MAW trip - I am choosing to be excited for her, for my other girls. For the fact that we get this chance to be together and create awesome memories to last a lifetime. It is hard to even think that it may be our only chance at ever doing something like this. But I won't focus on that part.
I will focus only on the amazingness of this entire journey. That's why I wanted to start this pre-trip report early. So I can document every little part of it, have it to hold on to.

We have not even met with our wish granters yet - but I am positive Kendall's one true wish will be to go meet Ariel, swim under the sea with her, be with her, and spend as much time as possible in the Happiest Place on Earth.

I will try to do full intro's in a separate post - i'm afraid of losing all i've typed in this one and need to double check i'm doing the pictures right!

Thank you for reading - hope you'll join in on our PTR!

terra
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Trip Dreams are Made of for my beautiful girls:
Kealey Grace - 11 yrs old, Karissa Lynn - 9yrs old, Kaylen Hope - 6 yrs old, and Kendall Quinn - 4 yrs old, brave mito warrior


To read more about Kendall's story - check out her Facebook Page
Hope for Kendall
Or read more on my blog: Terra Talking

Kendall's MAW trip PTR - "Part of Her World"
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Old 09-19-2013, 12:03 PM   #2
Shea&Van
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May you have a wonderful MAW trip!

Your story was so moving, I just had to pop in and send you big ole hugs. You have a beautiful family and I sincerely hope that this trip is the most magical time in your lives. Although we have never taken a MAW trip, a close friend has and she says they go out of their way to ensure everything is fantastic.

I hope your little sweetie enjoys her time with Ariel and Cinderella and that it is all you have dreamed of for your family.

Keep us posted on how everything turns out.

Many blessings to you!
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Disney Trips: June 1987 - WDW Off-site, July 1993 - WDW Off-site, September 2002 - DL Off-site, March 2003 - WDW Off-site, January 2010 - WDW Villas at Wilderness Lodge, September 2011 - WDW All Star Sports and Windsor Hills
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Old 09-20-2013, 01:37 AM   #3
Redwavess
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Joining in!!

What a little cutie you have!! Sorry to hear about all the struggles that have faced her and your family. Prayers that what the doctors are doing now will make a big difference. I know how scary it can be in the PICU when you are not sure how things will turn out. Big hugs to you!!!

Hooray for the wish trip!! The whole experience from wishing to flying home was magical!! Ariel and Cinderella her comes Kendall!!!

Let me know if you have any questions!!!

Happy wishing!!!

Madeline
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http://www.disboards.com/showthread.php?t=2602026 Mallory Makes a Magical Wish! -- UPDATE -- I wish for... Rudolph!? pg. 4 Post #46

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Old 09-20-2013, 04:04 PM   #4
terratalking
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thank you both so very much for your kind words! We are actually back up in the PICU right now with unknown issues - but she is mostly holding her own so we will gladly take it!
and now that I have a few quiet hours - I can hopefully fill in more info on our PTR! I feel like I have a billion questions to begin the planning process but not even sure where to start!
Madeline I am sure i will have to pick your brain once I get myself kind of sorted out! Thanks for the offer!

terra
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Trip Dreams are Made of for my beautiful girls:
Kealey Grace - 11 yrs old, Karissa Lynn - 9yrs old, Kaylen Hope - 6 yrs old, and Kendall Quinn - 4 yrs old, brave mito warrior


To read more about Kendall's story - check out her Facebook Page
Hope for Kendall
Or read more on my blog: Terra Talking

Kendall's MAW trip PTR - "Part of Her World"
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Old 09-20-2013, 04:07 PM   #5
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Following along!
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Old 09-20-2013, 10:18 PM   #6
moe10378
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Following!! Love that red hair! She's a beauty!! Will also be praying for you all! I know how difficult it is to have a child in the hospital, and others at home!
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Bailey's Special Wish pre and Trip Report
http://www.disboards.com/showthread.php?t=3165264

Bradley's Super Dee Duper Wish Trip
http://www.disboards.com/showthread....1#post52004741
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Old 09-21-2013, 05:04 PM   #7
terratalking
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Ok I'm going to attempt to do more of an intro on the other family members - and I apologize that my pictures are ginourmous! I'm still trying to figure out new photobucket! (and if anyone has tips on getting them more regularly sized - please feel free to let me know!)

Anywhoo -

Ben and I have been married for 16 years - moved cross country three times, have four kids, three cats and a whole lotta chaos!
This picture is of him when we took a short 2 day trip in January as our girls' christmas present and to let Kendall meet cinderella after a hellacious medically scary few previous months. It is a joke because he just is never a really excitable guy - and we took a lot of pics of him with "forrest gump" type blank faces on MK rides.


Kealey is our oldest - she is 11. She holds us all together with her amazing maturity, due in part i'm sure to all she has had to endure due to her little sisters medical issues.


Karissa is 9 and lives in her own happy little world most of the time! She always has a hug and love for anyone and everyone around her. She knows no strangers and is a constant example to me of how we should all strive to live - just spread love!


Kaylen is 6 and her nickname is "Hurricane Kaylen" - she comes in with intensity and lives with intensity and gives me a run for my money every day of her life! She had to grow up real quick as she was only 15 months old when Kendall was born and I was thrust into the world of living in the hospital with one baby while my mom basically raised her during those first few crazy months with Kendall. Kaylen is an awesome little girl who will do great things in this world some day - i just know it.


And Kendall - the wish kid. I did a little background in my intro post - but forgetting all the medical stuff - she's really an awesome kid. Nothing holds her back - not the tubes/wires/monitor leads attached to her more often than not, not the pain, the nausea or the weakness. she just LOVES life. She is my inspiration and my hero. And she's pretty darn funny too.


And I guess I should include one of me - but it will probably be the only pic of myself i will post on this thread!


so that's our family! Thanks so much to everyone who is following along! I am sure my questions will be pouring out once we get out of the hospital and back to real life. Or at least as much of a semblance of it as we get around our house!

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Trip Dreams are Made of for my beautiful girls:
Kealey Grace - 11 yrs old, Karissa Lynn - 9yrs old, Kaylen Hope - 6 yrs old, and Kendall Quinn - 4 yrs old, brave mito warrior


To read more about Kendall's story - check out her Facebook Page
Hope for Kendall
Or read more on my blog: Terra Talking

Kendall's MAW trip PTR - "Part of Her World"
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Old 10-01-2013, 05:25 PM   #8
JasmineOtt
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Joining in!

I'm so excited to hear your story and planning. You have a beautiful family and I am so happy for you guys! I like the idea of the story from start to finish. I love all the details! Keep us updated on how everything's going!
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Old 10-01-2013, 09:59 PM   #9
LB1122
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She is Ariel all the way...your whole family is so sweet. Let the planning begin.
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Old 10-04-2013, 04:23 PM   #10
terratalking
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Thank you so much to everyone for all the compliments on my family - and for following along on our story!

I am SO SO SO SO EXCITED!!!!

I was just sitting here reading through PTR's after talking with my sister this morning that they are going to try to plan another trip to WDW this spring (so basically I just have a lot of disney on my mind!) -


And then.....


OUR WISH GRANTER CALLED!!!!!!!!

We think we will be tentatively able to meet next Sunday the 13th!
She asked if we had any initial ideas about Kendall's wish (ummmm, yes.) and then if we had tentative dates (i'm thinking possibly february?)

and that all should work out fabulously!


Doing a major happy dance right now!


It makes it all seem so much more real!


terra
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Trip Dreams are Made of for my beautiful girls:
Kealey Grace - 11 yrs old, Karissa Lynn - 9yrs old, Kaylen Hope - 6 yrs old, and Kendall Quinn - 4 yrs old, brave mito warrior


To read more about Kendall's story - check out her Facebook Page
Hope for Kendall
Or read more on my blog: Terra Talking

Kendall's MAW trip PTR - "Part of Her World"
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Old 10-04-2013, 11:58 PM   #11
JasmineOtt
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Yay!

Yay for hearing from the wish granters! I'm so happy you have a date to meet with them! So Exciting!
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Old 10-08-2013, 01:19 AM   #12
Redwavess
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Quote:
Originally Posted by terratalking View Post
Thank you so much to everyone for all the compliments on my family - and for following along on our story!

I am SO SO SO SO EXCITED!!!!

I was just sitting here reading through PTR's after talking with my sister this morning that they are going to try to plan another trip to WDW this spring (so basically I just have a lot of disney on my mind!) -


And then.....


OUR WISH GRANTER CALLED!!!!!!!!

We think we will be tentatively able to meet next Sunday the 13th!
She asked if we had any initial ideas about Kendall's wish (ummmm, yes.) and then if we had tentative dates (i'm thinking possibly february?)

and that all should work out fabulously!


Doing a major happy dance right now!


It makes it all seem so much more real!


terra
What AWESOME news!!!

I'm so happy to hear the the phone call went so well and that things are starting to fall in place!!! We went in February and it was OUTSTANDING!!!! :dance 3:

Happy Planning,

Madeline
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http://www.disboards.com/showthread.php?t=2602026 Mallory Makes a Magical Wish! -- UPDATE -- I wish for... Rudolph!? pg. 4 Post #46

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Old 10-08-2013, 02:39 AM   #13
Imbri
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Subscribing!

She looks so cute with red hair.

And I didn't realize single people could sponsor MAW trips, I thought they were all from general donations.
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Old 10-13-2013, 05:44 PM   #14
terratalking
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Tonight is the night! We meet our awesome Wish Granters tonight!!!
We are all SO excited!

I will have a TON of pics to post tomorrow I'm sure!

All four girls are SO excited - my (healthy) 6 year old keeps asking if SHE gets to make her wish too!

Such a magical time....

Cannot wait to share all the details here!


terra
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Trip Dreams are Made of for my beautiful girls:
Kealey Grace - 11 yrs old, Karissa Lynn - 9yrs old, Kaylen Hope - 6 yrs old, and Kendall Quinn - 4 yrs old, brave mito warrior


To read more about Kendall's story - check out her Facebook Page
Hope for Kendall
Or read more on my blog: Terra Talking

Kendall's MAW trip PTR - "Part of Her World"
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Old 10-13-2013, 09:21 PM   #15
LB1122
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Looking forward to hearing all about the wish meeting. Hope it was so wonderful for all of you. Let the planning begin
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