Princess Sydney's Wish Trip PTR

[casper_jj11]

Well, we leave tomorrow for Chicago and quite honestly, I'm terrified. We met with the children's hospital here on Thursday and they believe there was somthing else in her sympathetic nervous system when she underwent her surgery three years ago but it was then, too small to find but now, its since grown. That said, because her urine testing is raising and then falling, they believe the tissue is becoming normal as it activates so they say there's no need for a scan until she has two elevated tests in a row. Regardless of that, we leave for Chicago tomorrow morning and on wed morning she'll get her urine retests as well as a ct scan. I forgot how afraid I was of these scans. She's so young that they need to put her under for the scans and I"m always terrified that she won't wake up. I guess others are afraid of flying, I"m afraid of anesthesia. Been feeling like I'm going to throw up all morning. Anyway, we'll know more about what's happening by the end of the day on Wednesday. I'm praying that the lab here is just really messed up and its all one big mistake.

I tried to work on the plans for Disney this weekend but can't really concentrate. Its so unlike me. I usually get so much fun out of planning every minute of our trips. At ;east Sydney doens't realize what's happening really. I spoke too much to others a week or so ago with her around and she started getting really worried about the trip but I found out that there's an American Girl store near our hotel. I showed her the website and she's so excited right now. She can't wait to go. I just hope the boys will be ok. We've never been away from them overnight before. I know my oldest is worried... I can see it in his face when he talks about us leaving. Its going to be the longest two days.

Sorry, just kind of needed to vent a little I guess. Wish us luck and keep Sydney in your prayers.

 

[cantwaittoseemickey]

I wanted to peak in and tell you I am thinking of you all. I hope everything went ok with your Chicago trip. I am praying for good news

 

[casper_jj11]

Thanks so much Tonya! Sydney is doing just fine. The ct scan was normal, thank goodness. We're still waiting on her urine test results and if they're normal, she's just fine. If they're elevated, they want to do a chest scan as that's the only other location it could be with her as active as she is. Any other location and she'd be visibly sick. They truly believe that this is lab error on the part of our lab here. They have a huge neuroblastoma group at that hospital and I really ahve faith in what the oncologist is telling us this time. She answered all our questions and spent an amazing amount of time with us. She disagrees with the theory being told to us here but agrees that, assuming her urine comes back with normal numbers, Sydney is fine.

The hosptial was such an amazing place. They had a pretend ct scan and xray machine in the waiting room which Sydney loved. They had her put an iv in a doll while she was getting hers, she was able to choose her own fleece pillow to hold and keep, we got to stay during the scan and Sydney even got to choose which of us was to wear the pink lead vest and they had this amazing 5ft tall bubble machine that Sydney could push buttons to change the colours of the bubbles. With all that, Sydney had a wonderful time and didn't need sedation for the scan at all. Truly an amazing, amazing set up.

I took yesterday off and feel so much better today. I'm actually starting to think about planning our August trip again. I've decided though that I'm not going to worry about how to make matching tshirts and getting the 'perfect' autograph book. I may make one set of tshirts but not the number I had planned. And while I loved the personalized autograph books we ordered in the past because they could fit a pictures on the side, the fact that the lady is no longer making them is completely out of my control. This is a different trip with a different purpose and it deserves a different type of autograph book. Time to put things into perspective and the little things, just aren't so big any more.... remind me of this in a few months time when I'm trying to make our final plans for the trip ok.

 

[rcq925]

I am so glad everything went so well! It sounds like an amazing hospital! So glad they are so wonderful with children!

 

[pacrosby]

OMG Joanne..............

did I ever answer your questions about Universal???????????



Honestly I can't remember but I'm thinking I didn't

Let me know ok (and if I didn't I will have to eat my socks )

 

[casper_jj11]

LOL Actually, you didn't but unless you dip those socks in wine first, please don't try and eat them Honestly, we've been so swamped with other things that its not a big deal but I'd really love your opinion on the plans if you have a minute. As before though, definitely no rush. I actually haven't even started to plan the disney days yet. I think its because I don't really know what to do. I'm used to TGM style planning and it starts months in advance but with the special GAC, I'm not sure actually what I need to do... I have to have a plan of some kind because we're used to it and we're happier that way ... otherwise we'll be standing around half the day trying to decide what to do when but I'm just not sure what we should do when... does that even make sense

 

[teresajoy]

I've decided though that I'm not going to worry about how to make matching tshirts and getting the 'perfect' autograph book. I may make one set of tshirts but not the number I had planned. And while I loved the personalized autograph books we ordered in the past because they could fit a pictures on the side, the fact that the lady is no longer making them is completely out of my control. This is a different trip with a different purpose and it deserves a different type of autograph book. Time to put things into perspective and the little things, just aren't so big any more.... remind me of this in a few months time when I'm trying to make our final plans for the trip ok.

I've been meaning to PM you for a few weeks. I wouldn't worry too much about making or buying too much for your trip....

 

[casper_jj11]

Thanks Teresa for the PMs!! I still owe you one but DH has been out of town.

Good news! Sydney's urine test is back, from both hospitals as the one here decided to run it just to test their system... and everything is negative! I don't know when I've ever felt so much at peace with everything. There's no 'what if' left ... she's ok.

On to do some planning

Anyone know if people will get upset if we go TSM 3 or more times in a row or if we need to take 'breaks' as such between rides?

And does anyone know how to make a 2.5 yr old grow, oh about 2 inches, in the next month and a half. Part of the planning of this trip was so Sydney could go before she starts school in Sept and so that DS2 would be able to do some of the bigger rides. Sydney rode Splash, Big Thunder, Soarin and Test Track one week after she turned 3 even though we had no plans for it because we didn't think she was tall enough. After that, I just assumed DS2 would be tall enough a few weeks before his 3rd bday... well, I think he stopped growing and he's going to be pretty disappointed if he doesn't reach the stick.

Off to find a babysitter for tonight. DH has been out of town til late last night and forgot to tell me about a party for his office that we're supposed to be at tonight. Not a biggie if we can't go but it'd be nice to go out even for just a few hours. Here's keeping my fingers crossed that the kiddos regular sitter can do it.

Have a great day!

 

[teresajoy]

I would go shoe shopping. I have heard that some children can grow a few inches just by shoe shopping...


And, that is WONDERFUL news about the tests!!!

 

[cantwaittoseemickey]

THAT IS AWSOME NEWS!!!!!!! I am so glad to hear Sydney's urine test was clear.

We cannot wait to ride TSM we have never rode it before. It sounds like a very popular ride!

 

[casper_jj11]

LOL Thanks Teresa. He does need new shoes ...

Tonya, TSM is wonderful! And its fun for all ages, even DS2 who doesn't shoot the cannon. So much fun and our only chance really to do rides back to back even with FP because its so popular. I was trying to plan HS and go back a few times to TSM and then thought, why not just do the ride several times back to back and minimize the walking...I'm just not sure if the CMs would allow that.

 

[cantwaittoseemickey]

Ooh I can't wait to ride TSM! It sounds really neat. Is it very loud inside?

 

[Laurensmom2004]

Ok got a chance to read your ptr....wow what a little beauty!!! I'm so so so glad her latest tests were negative....I know that particular worry and I also know the relief part and there's nothing like it

That hospital sounds amazing.....we use Arkansas Children's Hospital-their cardio unit is incredible too....hopefully we won't be going back to it for a very very long time!

Now have fun planning!!!!!!! I'm subscribing so I'll know when you update!

Big giant hugs!!!!!!!!

 

[casper_jj11]

Thanks for following!

I never really thought about whether TSM is loud so I'm thinking that it must not be. The first time we took DS2 he was 10mo old and he wasn't bothered by it or scared in any way.

 

[casper_jj11]

Hey everyone! Well, planning has truly started. I've done some touring plans just to make sure we don't miss anything we really want to do and so that we don't end up staring at each other in the parks saying "so, what do we do next?" So far, I've got MK planned and Epcot mostly planned.

I heard from our Wish coordinator a few days ago and she mentioned that our resort at GF was booked through GKTW. Its the first I heard of it but it looks like the kiddos will have a chance to see GKTW and experience it the same as other wish families which is wonderful! Not sure about orientation times for sure yet but we're hoping for one mid day on arrival day. We get in at 1pm so midday would be perfect and give the kids a chance to explore the village before heading off to GF. We have an ADR for CM for 5pm and I think that'll need to change so I need to start looking for other days that that may work. Honeslty, we're not huge fans of CM so it won't be the end of the world if we can't do it but it would be nice for the kids to see the characters on the first day.

Just got some wonderful news! Our wish group can't extend our trip and I've been fretting about how to do it without it costing us a fortune. Air Canada couldn't tell me the price of extending the trip without knowing the resesrvation number to know the type of fare that was purchased. Well, although the wish foundation can't extend it themselves for insurance purposes, they did give me the reservation number! I called Air Canada and changed our return date from the 14th to the 18th as planned and only had to pay a change fee because the price of the ticket was the same! Yeah! Could have been huge for five of us. Sydney's ticket to Chicago jumped from $200 plus tax to $600 plus tax in a day! So excited that that's done! I also have the rental car reservation number so I need to find out if National will let us extend the rental or if we need to bring the car back to the airport once the wish portion is over and get another one. Things are finally coming together!

 

[cantwaittoseemickey]

Sounds like things are coming along Great news on extending your trip!

 

[visitingapril09]

Subbing from over in BC!

 

[casper_jj11]

Thanks Tonya.

Hi Allison! My bil and sil are in BC... Prince George specifically.

Ok, so call me crazy, I've been obsessed with reading reports from IOA this morning about the Harry Potter opening. I really hope all the hoopla calms down before we go in August. As much as DH loves HP, there's nothing on earth that's going to get any of us in a crowd like is at the entrance today. I really hope there are no wish kids there today with plans to get in. That place looks like utter chaos!

 

[yinyanggirls]

Slowly catching up on everyone....
Great news about the testing! We've been going through the tests again and I forgot how annoying it is to wait around hospitals all day, play phone tag with docs offices for results, wait some more for results, back to hospital for more tests.....grrrr.

I'm so glad your chapter is helping you with the info you need to extend. We are SO glad we extended our trip. We were in shock when the first week was over so it was nice to have some more time before we headed home. Have you made plans for what you will do on your extended days?

 

[cantwaittoseemickey]

I am definately concerned with this for our trip. Sierra has her heart set on going here. There is just no way we would be able to do US without going to HP. For us we narrowed US with 3 main goals to help keep it simple. JAWS as that is Ty's main wish, HP for Sierra and ET for me and dh After that it we are good.

Thanks Tonya.

Hi Allison! My bil and sil are in BC... Prince George specifically.

Ok, so call me crazy, I've been obsessed with reading reports from IOA this morning about the Harry Potter opening. I really hope all the hoopla calms down before we go in August. As much as DH loves HP, there's nothing on earth that's going to get any of us in a crowd like is at the entrance today. I really hope there are no wish kids there today with plans to get in. That place looks like utter chaos!