Ty-bugs MAW pre-trip to ride Jaws and go to Disney! July 10-16 2010

[cantwaittoseemickey]

I'm loving the past trip report! The parade story is amazing...what a great ending to a thunderstorm-y day! Three months?!! It'll be here before you know it!

Oh yes that was quite the day. I didnt put this in there but we had had so much of the rain (it litterally rained from one side of florida to the other from the time we were in Carousel of Progress till we left) that we went to the train station sat down and I called my mom ready to come home. Yes I called my mom And unbeknownst to me she had fallen the night before and broke her arm(elbow) and never said a word. I found out on our way home from my sister. My mom said we were so miserable she didn't want to make it worse by me worrying about her

 

[cantwaittoseemickey]

Wonderful memories Tonya!!! Great idea to do a mini-TR within your PTR Helps pass the time and build the anticipation!

Hey, how old are Ty and Sierra anyway? You don't list it in your signature and I didn't read it in your intro. No reason, just curious

It is definately bringing up some great memories. And how much better this trip will be. We will be better prepared for Ty and know how to handle things alot better. And if it rains how to make the most of it instead of sitting and sulking like we did alot the last time

Sierra is 12 1/2 and Ty is 10. I will have to add it. I must have forgot to put it in

 

[cantwaittoseemickey]

We will be off to neuro on Wednesday for Ty to discuss his veeg and some things we have seen the last few weeks. Hopefully she will be able to give us some insight on what we are seeing as far as energy goes.

 

[cantwaittoseemickey]

Last day in Disney 2008 tr

We are able to sleep in just a bit before we have catch ME for our flight out so we head out around the resort for some last pics. It was a really hot but sunny day so we had a little bit of fun with it. Although it was a bit bright

First a stop by the "love bug".

Then a quick seat in the race car (I do mean quick since it was a bit toasty on the tushy)

Ok it's hot can we just go already?

Sporting our new tattoos

And the kids are actually taller then dh for once

After some pics we head off to the airport and are homeward bound.

to be continued..

 

[cantwaittoseemickey]

Seriously WHERE's the shuttle???This is it the 2008 tr finale


So we we board our flight homeward bound. Sierra is sitting by the window Im in the middle and dh and Ty are behind us. There was this nice gentleman sitting next to me who really tried to talk to me to keep my mind off the flight. It was a pretty bumpy and stormy flight. We had to take a different route home and it was all I could do not to shiver in front of the kids from pure fright. He kept talking to me all about his past flights and well some of the stories didn't help me at all but he didn't let one minute go by without saying something to pass the time. We had to fly around for a bit before we landed because the storm was so bad. We had a very bumpy landing and lets just say I told myself I would NOT get on another plane (you know that never say never thought comes to mind now) We land at the airport and there were buckets everywhere catching the rain. I called my mom who informed me that we had just landed right after a tornado warning and that was the reason we had to be rerouted then back around.

So we go out to catch the shuttle back to our hotel and we waited, talked to a nice family before their shuttle arrived. Talked to some more people. Waited some more. Um no shuttle So I call after quite a long while of waiting in the pouring rain(we were under a shelter thankfully) and the hotel informs me I was supposed to call as soon as we arrived at the airport. Um someone forgot to tell me that part So the shuttle gets there and the guy gets Ty and his wheelchair on the lift. Ty is very capable of getting on the shuttle without his wheelchair but he was pretty warn out by this time. So the driver pushes the button to lift. Um it bounced a bit then nothing. So it was just up a little bit off the ground. Ok I say no way he is getting off this thing. So we get him off and leave his chair on it. This chair does not fold well at all so we really needed it to be on the lift. Well he tries. And nothing. Tries again nope nothing. And over and over nothing. So we are sitting at the airport for at least 2-3 hours at this point. Not happy travellers at all. Tired and tired of rain.So the guy kept calling people at the hotel, his manager on MY Cell phone because he didnt have a radio nor a cell phone So he finally calls the big boss who tells him to get this Drive with the lift down So he hangs up and tells us what he said and I said I THINK NOT! That he will not put our lives on the line because that wouldnt be possible on bridges and other cars going by us. So him and dh work more on the lift and they finally figure out how to get the manual crank bar out and they finally got the lift back in. When we got to the hotel I spoke with the lady who didnt care to hear what I had to say so we decided to trek the 2 hours straight home in the pouring rain exhausted and just wanting our bed and this trip to be done and over with. So we got home at I think around 2 or 3am and took the necessities in and crashed in our nice cozy beds. I never thought we would be able to go back to Disney. Ty's Wish trip will be so much diffferent as we will be able to do things we would have never dreamed we would be able to do on a trip. We budgeted like crazy for the 2008 trip. We were so upset that it was a hard trip. Ty is really looking forward to doing alot more on his Wish trip. We are so thankful that he has his Wish to go back for a do over trip. We learned so much and will be better prepared. Now no rain allowed!!

So there you have it. The trip (not so magical) to Disney World

This upcoming Wish trip will really give the kids the true meaning of Disney.

 

[Momofwishkid]

Hi Tonya, just getting caught up around here. I havent read your whole Tr from 2008 but am so sorry that last day so such a pain. What a way to end your trip.

 

[cantwaittoseemickey]

It was a hard day and I was so thankful to be on the ground. But we learned so much from that trip. Looking back it seems like there was a "reason" it was a difficult trip.Like we learned how to handle things for his Wish trip that back then we knew nothing about. But God knew what he was doing. Only he knows what is in store for us and all of the lessons he has for us to learn. And we learned alot. There were wonderful memories made that trip outside of the hard times. But memories are that. Good ones and Bad ones they are memories the same.

 

[pacrosby]

You've got a great attitude Tonya I'm with ya..............everything happens for a reason and everything that happened yesterday helps you better deal with today.

I got a kick out of you saying "yes, I called my Mother". We never get too old for our mothers do we?

 

[cantwaittoseemickey]

You've got a great attitude Tonya I'm with ya..............everything happens for a reason and everything that happened yesterday helps you better deal with today.

I got a kick out of you saying "yes, I called my Mother". We never get too old for our mothers do we?

Thanks

LOL nope never get too old for them.

 

[wishin' on a star]

Hey Tonya, Sorry I've been MIA from your PTR the last couple of days. I loved your past TR. I hope this time around is full of sunshine and sweet memories!

 

[cantwaittoseemickey]

Hey Tonya, Sorry I've been MIA from your PTR the last couple of days. I loved your past TR. I hope this time around is full of sunshine and sweet memories!

Thank you Me too!

 

[cantwaittoseemickey]

I finally sat down and really looked at the days today. I was able to come up with a rough draft itinerary. No exact times since it is subject to change once we get there. But at least I have "sort" of a plan.

July 10-16th

Sat-Arrive, orientation and check out the Village and no doubt swim swim swim since both kids are water bugs.

Sun-Universal Studios/IOA

Mon-Sea World, IOA, Disney character meet and greet

Tues-AK, DHS

Wed-MK, Horseback riding

Thurs-Epcot,Winter Wonderland/Christmas

Fri-Come home

2 days of US, IOA is definately not set in stone. If we like them and need to we will do the 2nd day if not we will take our time at Sea World and then head back to the Village or go back to another park?

 

[Mtopher4]

Hi Tonya....

That would have been horrid to be stuck in the rain and waiting for a shuttle forever

Hope to visit here more.. if my computer holds out LOL

 

[cantwaittoseemickey]

Hi Tonya....

That would have been horrid to be stuck in the rain and waiting for a shuttle forever

Hope to visit here more.. if my computer holds out LOL

Sorry to hear about your computer I hope it snaps out of it Love having you here on my ptr.

 

[cantwaittoseemickey]

I ordered the matching bottom to my tankini today. It was even cheaper then it was 3 days ago

Now Im on the lookout for Ty some shorts. He is so skinny but button shorts are a little hard for him. And some sandals he can wear with his afo's that's easily on and off for the airport.

 

[wishin' on a star]

Sounds like you are getting everybody set for the trip! I still have some last minute shopping to do...hopefully after this week I'll have some free time.

 

[wishin' on a star]

I almost forgot...I wanted to tell you this. We have a friend through another group (who also happens to be going to GKTW the same dates as us!). Anyway, they travel to Cincinnati Childrens from New Mexico for all of her medical care. They had tentatively scheduled a bladder augmentation for July, but all of the testing this week showed things were going well enough that they want to hold off on the augmentation at this point, and they are going to do the botox to hopefully reduce the bladder spasms and help to continue to increase the bladder capacity.

I just wanted to share with you, as I know this is similar to what you are going through with Ty. She is elated that they are avoiding the augmentation surgery for now. This little girl currently caths through a mitrofanoff every 2 1/2 hours, does bladder irrigations with gentamicin, and takes ditropan.

Many of the kids with colorectal malformations like Catherine also have uro issues. We are lucky that aside from a single kidney with a history of reflux and stones, she now has no uro issues.

ANyway, when will Ty have the botox done? Where do you go for his uro care?

 

[cantwaittoseemickey]

Sounds like you are getting everybody set for the trip! I still have some last minute shopping to do...hopefully after this week I'll have some free time.

Im doing a little hear and there. It seems like our trip is so far away so I do little things to keep up the momentum.

I almost forgot...I wanted to tell you this. We have a friend through another group (who also happens to be going to GKTW the same dates as us!). Anyway, they travel to Cincinnati Childrens from New Mexico for all of her medical care. They had tentatively scheduled a bladder augmentation for July, but all of the testing this week showed things were going well enough that they want to hold off on the augmentation at this point, and they are going to do the botox to hopefully reduce the bladder spasms and help to continue to increase the bladder capacity.

I just wanted to share with you, as I know this is similar to what you are going through with Ty. She is elated that they are avoiding the augmentation surgery for now. This little girl currently caths through a mitrofanoff every 2 1/2 hours, does bladder irrigations with gentamicin, and takes ditropan.

Many of the kids with colorectal malformations like Catherine also have uro issues. We are lucky that aside from a single kidney with a history of reflux and stones, she now has no uro issues.

ANyway, when will Ty have the botox done? Where do you go for his uro care?

That is great news that they may not have to do the augmentationI hope the botox helps her. It definately seems like they are doing it more now.Are they doing the botox at Cincinnati? Ty has all of his urological care done at Cincinnati.They have been amazing through this whole thing. They even sent us up to Chicago to see if they could help. He caths every 3 hours but doesn't have a mitrofanoff. He also does the gentimycin flush's and is on ditropan as well. Does she have kidney reflux as well?

Ty has his botox on May 18th. When is your friends daughters botox?Please let them know they are in my prayers

Yay that Katherine has no uro issues. The reflux is pretty scary for me with him I can't imagine it in a single kidney.

 

[wishin' on a star]

Yes, she'll have the botox in Cincinnati. Her VCUG this time was great, and showed no reflux. She isn't have the botox done until October. We're really excited to meet them at GKTW, as their little girl and Catherine are the same age.

yes, the whole single kidney thing is hard to deal with. It limits Catherine a lot. She had grade 3 reflux when she was born, but it was gone when the tested her at 18 months old. Just one of many miracles in our life. She's not allowed to play any contact sports where the kidney could get hit though. Thankfully, in kindergarten, it's not much of a risk, and the PE teacher is so good about making the games safe for her. I don't think she's ever had to just sit out and watch. However, on the soccer field every weekend...she has to be a cheerleader for her sister and brother. She takes it all in stride, thankfully!

 

[cantwaittoseemickey]

Yes, she'll have the botox in Cincinnati. Her VCUG this time was great, and showed no reflux. She isn't have the botox done until October. We're really excited to meet them at GKTW, as their little girl and Catherine are the same age.

yes, the whole single kidney thing is hard to deal with. It limits Catherine a lot. She had grade 3 reflux when she was born, but it was gone when the tested her at 18 months old. Just one of many miracles in our life. She's not allowed to play any contact sports where the kidney could get hit though. Thankfully, in kindergarten, it's not much of a risk, and the PE teacher is so good about making the games safe for her. I don't think she's ever had to just sit out and watch. However, on the soccer field every weekend...she has to be a cheerleader for her sister and brother. She takes it all in stride, thankfully!

That is so good to hear her vcug didnt show any reflux. I hope the botox helps her. The Augmentation seems like such an invasive surgery. We are so thankful they have been able to hold off this long for Ty.

What a great pe teacher Catherine has. Having great teachers definately help. to her for taking it all in stride. Ty does too thankfully. With him having to have the urodynamics test every 3 months just seems like it would be hard. He never complains about one test. Never says a word about all the dr apts or anything. Its just amazing. Just brings tears to my eyes what our kids go through but they keep on going. Definately strong kiddo's