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Old 10-20-2008, 04:00 PM   #1
macntosh
Wonders if the Tag Fairy is still around?
 
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Princess Mya's MAW Trip Report: First Day and Going Away Party Posted 3/6/09

Well I thought I would at least get a place holder and start this party.

Let's start with the cast:

I am the Disney addict that has pulled in the whole family, when my wife and I met 12 and 1/2 years ago I worked for Warner Bros, but had always enjoyed the Disney Gang. We were married only six months after meeting each other and I took her to Disney for our Honeymoon, which is a story in itself and I will share at a later date.

My wife is the girl next door and the strongest women I know for going through all of this with me. She herself is a type one diabetic since the age of six, so for over 25 years she has faced a life threatening disease with charm and elegance. She has provided me with love and friendship in good times and bad and most of the time when I don't deserve it.

Our first son Griffin was Born Still on June 6th, 2001, D-Day. With our dark sense of humor we now refer to that day as Delivery Day or worse dependent on our mood. That was a very trying time for us, but we let him go from our hands to His and work hard at never forgetting our first precious angel.

Mya our wish child was Born on November 13th Mya Quinn is a perfect princess with Hannah Montana Attitude. She was born 8 weeks early and lived in the NICU for 17 days before coming home. When she came home we thought she was just perfect, but a friend of ours who had a baby shortly after her thought our child was "stiff". At about four months of age we had her evaluated and no body wanted to diagnose it, but they would say under their breath Cerebral Palsy. It was at one year of age that she had her first Brain Scan, it revealed what we thought. Mya had two small clouds at the base of her skull that were causing messages to not make it all the way to her legs as planned. This resulted in increased muscle tone and tightness in her legs that standard stretching and such does not really fix.

Mya crawled on her belly until she was almost two, walked with a walker for 6 months and then used forearm crutches for almost a year and half. Oh was she cute on those bright purple things with stickers all over them. Finally she walked but had to hold a hand for quite some time and still likes to hold one when using steps, stairs or uneven ground.

Other then her legs though, our child is smart as a whip. She started kindergarten this fall, but already reads like a first grader and has started to learn sign in order to communicate with her little brother, who is deaf. She also assists with his care which includes being sure his trach does not become clogged or if he needs assistance with some medical issues, she’s willing to yell out loud for us.

Our third child is Aidan and if I didn't know better this is the child I would have thought would be receiving the wish. Aidan was born March 9th of 2007 and at three days of age was transported to the same Hospital Mya had spent 17 days in, only this time he was going to stay much longer. Aidan was going to have an emergency surgery and we found out that he had a dieing small intestine, at the end of surgery he had lost 75% of his small intestine. Mya's stay in the NICU was going to be a cake walk as opposed to what we were about to experience. When it was all said and done, Aidan's stay lasted a little over 8 months, one code blue, multiple de-canulations, many ambu bag experiences, medically enduced paralysis, sleepless days and nights, multiple surgeries, many deaths around us, tracheostomy, feeding bags and deafness just to mention a few.

Well that was long and I'm sure a lost a few of you, but next I will write about how we got involved with Make A Wish.

This is our Journey and I hope you enjoy it.

Here is Our Story

Chapter 2?
New Camera and the Big Give has Begun


Gifts from Maroo

Arial Outfit from PeachyGreen

Crayon rolls and other things from gcast1

Autoraph books from Heather

Tonight's surprise gift 2/6/09

Hannah Montanah outfit from mommyof2princesses

Two cute outfits by Tinka_Bella

Cute outfit for Aidan given by revrob

Last edited by macntosh; 03-05-2009 at 11:38 AM.
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Old 10-20-2008, 04:22 PM   #2
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Quote:
Originally Posted by macntosh View Post
Well I thought I would at least get a place holder and start this party.

Let's start with the cast:
......

Well that was long and I'm sure a lost a few of you, but next I will write about how we got involved with Make A Wish.

This is our Journey and I hope you enjoy it.
I FOUND IT! Great start! Can't wait to hear more!!
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Old 10-20-2008, 04:38 PM   #3
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I am subbing in.. You are a very strong family to survive all that you have!! God Bless you! And your kids are GORGEOUS!!
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Old 10-20-2008, 04:40 PM   #4
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I am subbing in!! Your kids are gorgeous!!
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Old 10-20-2008, 04:49 PM   #5
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Goodness, your family has been through so much! How strong you all are! I agree with what others have said-your children are beautiful. I look forward to reading more!

Carol
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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
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Old 10-20-2008, 04:50 PM   #6
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Mac-what a great beginning!!
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Old 10-20-2008, 05:06 PM   #7
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Mac - Looking forward to hearing all about this journey!
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Old 10-20-2008, 05:07 PM   #8
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I told dh it must have been something in the water over there
 
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Mac look forward to reading more!
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Old 10-20-2008, 05:49 PM   #9
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Hi Mac,

I cannot wait to hear more. Have you set a date yet?
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Old 10-20-2008, 06:34 PM   #10
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Wonderful start. I can't wait to hear more.
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Old 10-20-2008, 08:02 PM   #11
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Hi, Mac! I am in!! I can't wait to read more about your wonderful family and this trip of a lifetime!
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Old 10-21-2008, 01:31 PM   #12
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I am in!

Great job!! I am in!!!

But I have a question...how is Aiden now (I don't think I spelled that right???!?!)...how is he doing?

I can't wait for you guys to get dates!
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Old 10-21-2008, 06:18 PM   #13
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I'm subbed for the ride.
Your faminly is wonderful.
Looking forward to the next instalment.

Mandy
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Old 10-21-2008, 10:19 PM   #14
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Wow seeing all these supporters and well wishers makes me think I better hold up my end of the bargain.

Well let's go back and talk a little more about Mya, this time including pictures.

As I stated before Mya spent only a few minutes with us upon delivery before she was quickly rushed to Cook Childrens Hospital in Ft. Worth. She was taking by Teddy Bear Transport, so for two days I got to make the drive back and forth between the two hospitals while Naomi recovered from her delivery.


It was quite the journey for us, but for Mya it was nothing but a time to rest and get read for the big world.


Once she was released and when we found out that something just wasn't quite right, we got her involved in therapy, we have always been quite agrresive with this doing both physical, occupational and even Equine when we found out about it's availability.


Through all of this she has been nothing but the little trooper. She got her first experience with Disney when she was about 2 1/2. I had business in California and with free miles chose to bring the two of them out with me. This is her first visit with Cinderella and Mickey.



For her third birthday I had found the Dis and they made us some wonderful shirts and showed us how to save some money. We spent it at the Wilderness Lodge and had a blast pin trading and doing rides and all those things you desire from an experience such as that. She no longer used her crutches, but did wear out more quickly then others.



It was at that time Naomi and I said we would be bringing her back for her sixth birthday, not knowing exactly what the future held for us, but to say the least two weeks ago there was no way I thought it would actually be happening. So fast forward to early this summer. I was familiar with Make A Wish, but thought it was only for the Terminally Ill and that wasn't Mya. I did however hear someone say that we should ask, because they had hear policy may have changed. So being the sales person that I am and know the worse someone can do is just say no. I submitted her name. A week later we got a call asking for Dr's names and such. I thought this is where it ends and to be honest forgot about the opportunity. Then we got the call and well that is what this posting will be all about.

Currently I am hoping for a late February Date, this way we might also be able to celebrate Aidan's upcoming Trach Removal and hopefully he will be walking himself by then. I have booked a breakfast at Cinderella's Royal Table and would love to attend the Pirate and Princess Party if it is actually happening one of those last two weeks of the month. I also want to go at a time when others are still in school, before the Spring Breaks so that the park is more accessable for all of us.

So here is the clan and man are we excited!
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Old 10-21-2008, 10:53 PM   #15
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I love reading about and seeing your family! Your kids are gorgeous! I'm looking forward to your trip! I'll be there February 7-14
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