A little girl and her Wish

[carebearkidney]

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!

 

[Miamakesawish]

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 ;-)

 

[Miamakesawish]

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!

 

[Miamakesawish]

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!

 

[Miamakesawish]

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>

 

[carebearkidney]

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.

 

[Sorcerer Jody]

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.

 

[disneylandkitkat]

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.

 

[Miamakesawish]

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!

 

[Miamakesawish]

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!

 

[nesser1981]

Welcome to the DISboards! Your family is beautiful!

We went on our DD's wish trip back in February/March, it was amazing!

Read lots of PTR & TR's and ask lots of questions.

I'd say, research the rides & height restrictions, that was one of the best things I did. It helped me steer the kids away from rides I knew they weren't big enough for without them getting upset.

All of your kiddos look pretty young, schedule a character breakfast or two if you can. We did 4 and the kids loved them!

Don't try to overbook your day, you'll be able to have do a lot, but remember that you'll probably have to cut some things out. I had a list of activities/rides/shops we wanted to hit on our trip, but if we had to scratch something off, we just went with it.

Try to figure out what is most important to each kid, that way they all get to do something special that they picked. I knew my DS really wanted to meet Flik from A bug's life, DD (our wish kid), she wanted to do whatever. LOL!

Research the characters your kids want to meet, that was a huge part of our trip. DD met over 40 characters while we were there. I used this site.
http://kennythepirate.com/

Don't be afraid to point out you're a wish family to the CM's, they'll get you to the front of the line for characters and you'll be ushered right into the fast pass lane on all rides.

Check out our PTR for my planning pages if you want, it'll give you an idea of how our trip went and it was very smooth! My DH made fun of my planning pages to start with, but they were a god sent in the end.

 

[Miamakesawish]

Great Advice!!

Thank you so so much!

I can't wait. I am definitely going to research the height restrictions!

Thanks!!

 

[GavandGraciesMommy]

Have a wonderful time! I cant wait to hear how everything goes

 

[petals]

That video of Mia's donor has me bawling. I'm so sorry to hear the news. Praying for you all.

 

[Lilfoot93]

You and your family are in my thoughts and prayers.

Jackie

 

[Jerseyguy's Wife]

I just wanted to let you know that you are in my prayers. And I'd hug you if I could.

 

[Viator80]

This is so sad, however I'm glad to hear that you can have some comfort in knowing that you have saved others lives by donating Mia's organs. You are in our families thoughts.

 

[kdtass]

What a great site to see the characters!!! Ill def be checking that out!