Happy Kidney-versary baby boy. Celebrating his kidney transplant at Disney World!

[carebearkidney]

Hello all! This is my first trip report (though my 12th time to Disney World) so please bare with me.
A little background: my youngest son went into kidney failure in utero. After four fetal surgeries to save his life and several procedures and interventions as well, he decided he'd had enough "pokes" through my belly and wanted to arrive 2 months early. Out of the fire, into the frying pan buddy! He just had his 29th surgery this past Tuesday, but my favorite was number 17 - KIDNEY TRANSPLANT!!! Needless to say, with many hospitalizations and hours spent on hemodialysis - Mickey got my son, Matthew, through it all!

[/IMG] So, once we got the all clear from the transplant team, we started making plans for Disney! We invited both sets of grandparents to accompany us, (myself, hubby, Matthew and oldest son William) since this was a celebration for ALL us! We told the boys we were off to see the world's largest ball (technically it's not a lie - Spaceship Earth is a VERY large golf ball They were excited about that! I'll be back tomorrow to tell you how and when we finally told them. And no...I wouldn't be mean enough to keep up the charade until we went the wrong way...thru the cast entrance...or maybe I would.

 

[Ellen]

Long time PICU nurse here and love to hear the happy stories. He is adorable and you deserve a year of Disney magic!

 

[ladylyons]

He's adorable!!! I can't believe how much he's already been through in such a short amount of time!! I can't wait to read more and see how you told them where you were going.

 

[blessedmom4]

Matthew is so cute! I will admit, besides his gorgeous eyes, that PEG tube jumped out at me in his pic. Looking forward to hearing all about your trip!

 

[carebearkidney]

I think it sticks out to anyone that has ever used a g-tube. He's eating more by mouth since transplant and we are hoping our next trip to the OR is to take that OUT!

 

[kadesha]

He's so cute! My daughter has some kidney problems also. She had her surgeries done at Scottish Rite. The hospitals in ATL are great. Looking forward to the report!

 

[carebearkidney]

So we get the boys up bright and early. They are so excited to see the large ball. Eight hours in the car and the boys did FANTASTIC!

[/IMG] A two year old and a five year old were more "grown up" than me and my husband with their virtue of patience. Maybe it was because WE knew where we were really going.
The 8 hr trip turns into 10.5 due to bathroom breaks, stretching legs and stops to do feed boluses for Matthew. We tried to stop at places with little playgrounds. Here's the Chick fil a in Valdosta, GA.

[/IMG] We finally were getting closer to Disney, turning on the car radio to the Disney radio station. The boys didn't pick up on that. We would point out billboard signs - nothing. Alright, they will see the BIG Magic Kingdom sign when we get closer to our resort - we were staying at Shades of Green (hubby is Coast Guard) which is right across from the Polynesian.
We got the video camera out to capture their excitement...but it seems our GPS was a little confused! It took us the BACK way to SOG...thru the cast member area of the Magic Kingdom! We ended up in their parking lot! The attendant just had us drive through there and told us directions to come up behind the Grand Floridian to reach the resort that way. Needless to say...NO big Magic Kingdom sign. Stinking technology! So we just told them. They were very excited needless to say, and that's what really matters.
We got to our room (here's the view off our patio)

[/IMG] and settled in before letting the boys explore. My husband and I had been here before, so unfortunately I didn't take too many pics of the resort. The last time we left with our most expensive souvenir (William - 9 months later!): But I did manage a few of the kids enjoying the resort.

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They loved on the big Mickey in the lobby and had a blast feeding the fish/ducks and then driving the military boats on the water too.
In the morning - we head out to Magic Kingdom. Here's a couple of pics in front of our resort of our family and my parents with the boys too.

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Have you ever seen a picture of a little boy with medically induced PTSD on a carousel? You're about to!

 

[carebearkidney]

Kedesha - Matthew was in the NICU at Scottish Rite for 7 weeks, and he had a few surgeries there. Most of his BIG surgeries have been over at Egleston though. I hope her kidneys are "feeling better". Nice to see another Atlanta area family here!

 

[blessedmom4]

Just wanted to say:

I am still here if yo uhave ite o tupdate...​

 

[ladylyons]

I'm here reading along. Glad you guys made it even if the GPS system was a little off!! Glad the boys were happy. We'd love to read more!!

 

[carebearkidney]

Happy Memorial Day to you too!

And I promise to write more soon. My husband had his two week drill, Matthew had a LOT of complications from his past surgery that had us at the hospital a good bit and then kindergarten graduation. Needless to say, it's been busy!
Update coming tonight or tomorrow - promise

 

[CandleontheWater]

Your little boys are adorable and your story is very touching. I'm so happy that you guys got to celebrate at Disney. I'm looking forward to reading more!

 

[luckylady]

What a wonderful way and reason to go to Disney. Happy one year Matthew. Can't wait to read more.

 

[blessedmom4]

Thinking of you!!

from

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[carebearkidney]

Oops - time gets away from you doesn't it when kids are out of school for the summer. Matthew had another procedure on the 11th and got the all clear for 6 MONTHS. Six MONTHS of NO surgeries - that will be our longest time yet! So excited! And so ready to update again. Thanks for checking in and reading so far!

So we headed out to Magic Kingdom for day one of our transplant-o-versary trip. The first ride...Dumbo! I don't have any pictures because Matthew screamed bloody murder the entire time. The unfortunate "evil" of PTSD is that he needs time to adjust to something new...well, that ride if over in what 65 seconds? Not a whole bunch of time to acclimate oneself to a flying elephant... So we head to the carousel. The first time around (another 60 seconds), Matthew cried for about 50 of those.
Here he is with red rimmed eyes, but at least not crying. Daddy was trying to distract him with the pretty horse clothes.

William was having a blast!

We went back on again and no tears this time

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Afterwards, we caught the parade and castle show. Shot at Zurg (the boys' favorite ride of the day - and yes, we now are the proud owners of Buzz Lightyear's laser blasters), avoided getting sprayed by elephants on the Jungle Cruise and followed Push the trashcan all over Tomorrowland. Matthew was mesmerized by Push! William couldn't get his eyes off the Tomorrowland raceway. It was a wonderful day, followed by dinner at the Animal Kingdom Lodge - Boma...yum!

Here's a few pics.
William on the Jungle Cruise -

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WedWay People Mover - William

Matthew WedWay

helping out Buzz

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The BIGGEST highlight of the day - Matthew got stickers, just for being a kid. Not for labs, xrays, procedures, biopsy or surgery. They gave him a whole roll and he started crying - "no bloodwork mommy". No bloodwork baby. Just for YOU!

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We tackled two parks in one day next - note...young kids are not really a fan of this I found out. Live and learn!

 

[jennyjinx3]

can I join in? You have me tearing up with your precious family...

 

[carebearkidney]

Of course! No tears allowed however Unless it is happy tears.

 

[Blissikins]

Your kids are adorable! I've subscribed, can't wait to hear about two parks in one day!

 

[carebearkidney]

yay! Boys are finishing up chocolate chip cookies right now. Then bath, reading and BED!!! Hubby is drilling this week with the coast guard (the other woman I often find myself at war with)
I am bound and determined to get this kick started and update tonight. Fingers crossed! Thanks for joining in with us.

 

[carebearkidney]

So the first park of the day was EPCOT. Even though I love it there...I knew a just turned five year old and a not quite three year old wouldn't give a ratatouille about the World Showcase.
We started off at Test Track. Since Matthew was too small for this ride, one set of grandparents took him to sight see while we rode with William and then the grandparents switched off. Lucky William got to ride twice - woohoo fast passes! He LOVED it! Had so much fun. Still talks about it today - nearly a year and a half after. Afterwards we rode Nemo and Living with the Land before grabbing a quick bite in Mexico to ride the Three Amigos ride there.

Matthew sightseeing - he's got the whole world in his hands...OK, it looks more like Jupiter - but whatever.

Matthew LOVED the fountains - wish I would have brought some extra clothes and a covering for his vesicostomy (he can't get it wet due to his immunosuppression)

Here's William enjoying Test Track

We were ready to head over to the Studios when the boys have a small breakdown - why are we leaving so early? Are we going home? Back to the hotel? Why can't we stay and have more fun? I have to reassure him that we are not going home - we are going to another park to have MORE fun. After that is squared away, we are back to smiles.

We pull into Hollywood Studios, letting the kids finish their MUCH needed naps in the car. We spent a solid hour playing on the Honey I Shrunk the Kids playground. Then on to Toy Story Mania - none of us had ridden that before, and we had a BLAST...even if I had to share my "gun" with Matthew. We finished off with dinner at the 50's Primetime Cafe before heading in early since naptime wasn't NEARLY long enough that day!

Toy Story Mania

family shot, minus hubby that took the pic

Next, my "zoo" meets Disney's animals!