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Old 08-19-2012, 04:08 PM   #16
maroo
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Quote:
Originally Posted by Miamakesawish View Post
Hi Maroo! Oh Thanks so much!! This DISboard is awesome. It is just a wealth of fabulous information.

Yes, it is through Make a Wish. Such an incredible organization. I know I don't even know the half of it because we haven't go yet, but so far I think they are all angels!

We are staying at a place called Give Kids the World. (GKTW) I am slowly learning all the abbreviations. From what I have read on other's posts we are gearing up for quite the experience.

Thanks so much for posting our trip. It looks like you do a lot of everyone on here! I was going to private message you a question when I was first posting, but didn't want to bother you. I eventually figured it out... now I'm embarrassed to tell you what it was. :-)

Thanks again!!!

Mimi
The DISboards is an amazing place! I have met so many friends on this board that have become true friends in "real" life - friends I call on the phone and many that I have met in person! It is really great!

Make a Wish is a whole bunch of angels!!!!

GKTW is an amazing place! I remember when I first came on the DIS - I felt like I was drinking from a fire hydrant! I would NEVER be able to read all of this or find my way around - and I have not read all of it (by far!)...but I did find my "place" and a few great friends along the way!

I do try to keep up with each pre-trip and trip report as you guys write them. My old job was such that I spent a lot of time on hold with nothing to really do and they did not care what we spent time on as long as the work got done - my new job is very busy every second I am there (job security!) - but no DIS time!

Feel free to PM me anytime!! I really don't mind answering questions at all! I am not on here every day yet - I am building up after being gone almost a whole year - but I don't mind answering PM's!

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I never knew what a wonderful place it was until Trevor showed me Yes. It is true that is where our miracles happened

I have cried on some of the posts too. We went to an event last weekend and I cried there too as some of the people were talking... I better pack lots of kleenex when we leave on our wish trip!

Jackie
TOTALLY bring kleenex on your trip! And warn your kids that if you cry it doesn't mean anything bad - that you may cry happy tears - because ... man... wish trips are full of those moments! :
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Old 08-20-2012, 03:36 PM   #17
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The rest of Us



This picture is a year old... I guess it's time to get a new photo taken.


I thought I would introduce the rest of us… the band of characters that adore our little Mia.

Mia although I introduced her initially is both a little and a big sister. She fits in perfectly as both rolls. She is one loved little girl and here are the people that can’t get enough of her.

Sam, aka Sammer jam, Sam bone, Boney is our super active 2 year old that has a smile that can melt your heart. He is always on the go and as of late can read books all day long. He loves books! He is usually trying to keep up with older siblings and does a pretty good job. He loves music, dancing, and will snuggle me all I want as long as I am singing. He is such a fun kiddo and keeps us entertained pretty much all day.

Ellie, aka Elvis, Elle, Ells bells, ELMNOP, is our intense seven year old that is our little mother Hen. She is all girl, but would not think of being left out of any activity that the boys are doing. She is extremely nurturing and often takens over my roll as mother and does quite a good job of taking care of her “babies.” Her willingness to care constantly for the youngest two has come in quite handy from time to time. She plays hard, and does not stop moving/ pretending/ or dancing in her room until late at night. She is a fun girl, and keeps us all on our toes. Mostly she is Mia’s big sister and her relationship with Mia is very unique. She always takes care of Mia, and wants her to have the world. She even wants Mia to blow out her own birthday candles on her birthday. She is really endearing when it comes to how she treats Mia.

Jensen, aka Jense, Jense buddy, J, and J dog is the oldest of the littles. He will be 9 years old in a week and is our responsible, get it done boy. I don’t have to ask this kid to do anything twice. He is very motivated and works hard. He is also my little collector. He values everything…. and by everything… I mean everything. He has been known to hang the tags from his clothes, on his wall. He finds treasures everywhere he goes. He is very engineer minded and likes to take things apart and put them back together. He is a super reader and a great student. He is easy to please and a genuinely great kid.

John, aka John boy, JB, dad, daddy, dadd-e-o is a really hard working student. After Mia was born and we lived in a hospital for months JB decided to make a career change. He has spent this last year in nursing school. I think he is going to be a great nurse! I am so ready to not be students anymore, but am so proud that he worked hard and did a great job getting a different degree. He is a dedicated father and spends all the time he can playing with the kids. Oh and he is funny… really funny. He makes us all laugh and doesn’t let anyone get away with being “grouchy.”

Me, aka Mimi, mom, mama-is a stay at home mom. I love staying home with my kids, but I also thoroughly enjoy coaching a dance team. I do that part time, and love it as well. My days are everything you would expect… cleaning, cooking, driving, organizing, picture taking, hugging, refereeing, and then cleaning some more. I love my life and try not to let my trials get the best of me.

That is us- I think it will be really neat for my other kids, not just my wish kid to experience the magic at give kids the world. They deserve it as well, and I just cannot wait to see the looks on their faces when we get there.

The count down is on… can someone fast-forward to Oct for us? ☺
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Old 08-20-2012, 09:33 PM   #18
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Your family is so precious. I hope Mia stays healthy so you can go on your trip for her. When you described the phone call that she had a donor made me cry. I can't imagine that feeling.

Looking forward to more!
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Old 08-21-2012, 03:06 AM   #19
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What a beautiful family! You guys are going to have so much fun at GKTW.
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Old 08-21-2012, 05:52 PM   #20
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Hi .. another heart mom here !

Jayden is my wish kid and we got to take our trip this past April. It was A-mazing !!
GKTW was such an awesome place and I there isn't anywhere else like it !

When I first found out about our wish, I came here and read as many reports as I could and learned SO much about how it all works. I felt very prepared .. but it still couldn't prepare me all the way .. nothing can .. it's an incredible experience !!
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Old 08-21-2012, 06:01 PM   #21
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Just found your trip thread! Yay for Mia and double yay for donors!
We went to Disney for my son's one year kidney transplant anniversary - plan to take wipes for counter/table service and purell hand gel for after rides. Matthew did surprisingly well for going at the tail end of February/beginning of March. I think y'all are lucking out going that early in October - before the flu season hits us in the south.
I can't wait to read more...as long as it doesn't contain an update with that dreaded "R" word! We don't like that word around these parts!
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Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
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Old 08-28-2012, 12:18 AM   #22
Miamakesawish
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Originally Posted by rachel09985 View Post
Your family is so precious. I hope Mia stays healthy so you can go on your trip for her. When you described the phone call that she had a donor made me cry. I can't imagine that feeling.

Looking forward to more!

Oh- thanks so much! Mia has truly changed us all. We love our angel donor Jacob. We just love him! I am hoping hoping she stays healthy. Maybe I should lock her up until October ;-)
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Old 08-28-2012, 12:25 AM   #23
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Originally Posted by Moodyzblu View Post
Hi .. another heart mom here !

Jayden is my wish kid and we got to take our trip this past April. It was A-mazing !!
GKTW was such an awesome place and I there isn't anywhere else like it !

When I first found out about our wish, I came here and read as many reports as I could and learned SO much about how it all works. I felt very prepared .. but it still couldn't prepare me all the way .. nothing can .. it's an incredible experience !!
It's true. I am officially addicted wish trip threads. I can't stop reading. I just read through yours. Your boys are oh so handsome! Thanks for posting pictures of the food. :-) It looks tasty!

I just can't wait. I wish we were going tomorrow. Thanks for saying hi!
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Old 08-28-2012, 12:32 AM   #24
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Originally Posted by carebearkidney View Post
Just found your trip thread! Yay for Mia and double yay for donors!
We went to Disney for my son's one year kidney transplant anniversary - plan to take wipes for counter/table service and purell hand gel for after rides. Matthew did surprisingly well for going at the tail end of February/beginning of March. I think y'all are lucking out going that early in October - before the flu season hits us in the south.
I can't wait to read more...as long as it doesn't contain an update with that dreaded "R" word! We don't like that word around these parts!
Hi there- I love meeting new transplant mom's. I wondered about the rides. Mia's first time at an amusement park landed her straight in the hospital with a virus that eventually spiraled her into the R word. It was awful. I will definitely be extremely vigilant with the purell There is no rest for a special needs mama... but hey, in Disney World who needs rest!? :-)

I have always felt so extremely lucky that Mia received a transplant. We got to keep her... and now we get to go on this amazing trip. It's almost to much for my heart. We just keep on receiving incredible gifts!
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Old 08-28-2012, 12:37 AM   #25
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Mia's Donor

Hi all,

I have been out of town, but wanted to introduce our sweet donor baby. His name is Jacob and he is a very important to all of us. Mia asks about him on a daily basis. Hopefully someday we will get to meet his Mama. We love them both so much!

- You might want to grab a few tissues.

https://vimeo.com/32950978

Not sure if this will work, but the link should.

******** src="http://player.vimeo.com/video/32950978" width="800" height="450" frameborder="0" webkitAllowFullScreen mozallowfullscreen allowFullScreen></iframe> <p><a href="http://vimeo.com/32950978">For Jessica</a> from <a href="http://vimeo.com/user3511923">Lilly McDowell</a> on <a href="http://vimeo.com">Vimeo</a>.</p>
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Old 08-28-2012, 07:49 AM   #26
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Love, love, love LOVE the video! Was it an open donation so you could send letters to each other? God bless baby Jacob and his mommy. May his spirit live on in Mia, allowing her to do many incredible things in life.
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Trick or Treat Trip Oct 11-16th 2014
Shades of Green :

Our MAW PTR
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Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

Kidney-versary trip 2011
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Old 08-29-2012, 12:28 AM   #27
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I just happened upon your trip report, and watched the video - it made me cry, two such precious babies. You have a truly beautiful family - thank you for sharing your story.
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Old 08-29-2012, 01:26 AM   #28
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I was born with a small aorta. I had open heart surgury at 3 weeks 6 years old and 21 years old. I am now 32. When I was born it didn't look good for me surviving. It breaks my heart knowing what my mom went through. Now I am slower then others however I am still living and that's a good thing. Just want you to see some one else that has defeated the odds like your mia will.
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Old 08-30-2012, 10:43 AM   #29
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I was born with a small aorta. I had open heart surgury at 3 weeks 6 years old and 21 years old. I am now 32. When I was born it didn't look good for me surviving. It breaks my heart knowing what my mom went through. Now I am slower then others however I am still living and that's a good thing. Just want you to see some one else that has defeated the odds like your mia will.
Hi there!

Wow! I love meeting fellow CHD survivors. I have aortic stenosis, and like you have had three heart surgires. They told me I would never be able to have children. I have four :-) Sadly, Mia got my not so lovely heart gene and has been put through the ringer. It is just amazing how far the medical world has come. My heart is not in that great of shape, but it is holding strong! Did you have the surgeries they do for hypoplast kiddos? Thank you so much for commenting. I know there are others out there, but I don't know that many adult CHD survivors. It's great to "meet" you! :-)
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Old 08-30-2012, 10:44 AM   #30
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I just happened upon your trip report, and watched the video - it made me cry, two such precious babies. You have a truly beautiful family - thank you for sharing your story.
Thank you so much!
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