Princess Phoebe's Pre-WISH-Trip Report (arriving in MK 4/17/10)

[Wee Annie]

Melissa,

you want to feel better about your planning? I haven't even done an itinerary for our GKTW week. I think I posted something on this thread A LONG time ago with some basic plans, and haven't done anything since. And, quite frankly, don't even have those plans handy (I'll have to look through this PTR!!). I've been feeling so overwhelmed with just getting through our day by day recently, that I think I'm subconsciously rebelling and refusing to plan anything. I'm sure I'll get my butt in gear soon enough. See, this is why I couldn't do a PTR -- there would be no entries!!

LOVE your hubby's Big Give gift -- priceless. And Elke received a blanket -- I believe it was a Project Linus blanket -- when she was in-patient for seemingly forever last year. It is much treasured (and on her right now).

Now I'm off to (excuse me for this) more vomit cleaning duty. Elke seems to have gotten a stomach bug. Good thing she's a pro at this from chemo....

I know, I know -- too much information. Hope I made you feel better re your planning.

 

[All7OfUs]

Glad you squeaked in just under the wire!! And glad you're willing to do this even if it doesn't end up equalling free tix.

 

[jenb1023]

Your plans will come together - don't worry! We made blankets for Project Linus too. I don't know if we will get a chance to go to WDW this year but we will just donate the tickets if we don't. Sounds like you just got in under the wire - hope it works out!

We have had some version of a cold/cough running through the house for weeks and now last night Jordan threw up. Hope you guys are feeling better!

 

[kellyw8863]

I love your husband's towel! I wouldn't worry too much about the lack of planning. I tend to waaaayyyy over plan, which in many ways, is worse. If you're interested, I have the TGM crowd calendars for all the parks that week. I'd be happy to share them with you if you shoot me a PM. I hope that everything works out with the GAD/GAD. Ali also has a Project Linus blanket from one of her surgeries - the muscle biopsy, I think - and it is one of her favorites.

 

[Momofwishkid]

Hi Melissa, Im not all caught up here yet but had to say I love Dh's towel and please dont stress to much at planning. It all seems to fly out the window when your there. Just get a basic plan together and your good.

 

[cantwaittoseemickey]

They sure reached thier goal quick for GAD! That is awsome!! Im so glad you got in, hopefully it works out for your tickets.

 

[yinyanggirls]

I'm sorry I haven't replied to all the replies lately. I'm really feeling a lack of energy lately, and today I found out why...the cough I got from Phoebe was really giving me bad headaches (muscle strain) so I decided to go to the walk-in clinic to see if it was treatable. They took chest X-rays and decided I *probably* have pneumonia. They say probably because the radiologist wasn't there, but said that the films looked "suspicious". So I did a nebulizer treatment in the office then got scrips for an antibiotic, an inhaler and some cough syrup. I feel better already, and really I just wanted to be rid of the headaches. So hopefully I'll be back in the swing of things this week. We've barely got a month to go!

I received an email from the photographer for Littlest Heroes and we got our first choice, Britt Anderson. I noticed after we chose her that she is the one who did Bella's family (StefaniLyn). I thought that was funny because we are doing them while we are in Savannah and I didn't know their family had gone there. Small world huh?

I have a couple of questions I've been meaning to ask. First one is about WDW....do they let you split a plate at the table service restaurants? I have a feeling Phoebe and I could easily share, and I wouldn't mind paying a plate fee or something. Hadn't read anything about it before so I wondered if it's even allowed?

Second question, or opinions wanted really, is regarding Phoebe's "stuff". We are taking her wheelchair of course. She uses it all day, every day, and also needs it to sit at a table. But I've been wondering about her AFOs. She wears them everyday for school but to be honest I rarely put them on her on the weekends or school breaks. We just don't walk that much with her yet. She might walk across the room a couple of different times but that hardly demands braces. I'm thinking of leaving them, but thought maybe they would help her balance to stand for things that she can participate in like petting animals, meeting characters, exploring the playgrounds. I'm also wondering about getting on and off rides. Will we have time to let her walk up to a seat, or will the CMs want us to do it as fast as possible? I mean I wouldn't want to hold up the line for several minutes, but if we carried her from her chair to a seat 10 feet away it would take 10 seconds, versus her walking it in 30-45 seconds...
We should be getting her walker any day now, but I don't think it folds up and I don't see her progressing enough in the next month to justify taking it.
Also, she has a "talker" or assitive communication device. It's about the size of a computer keyboard and attaches to her wheelchair. She does use it daily but for very few words, that frankly we know how to communicate with her without the talker. She says "hungry, thirsty, more, hello and all done". For hungry we can pretty much tell if she is whiney and it's been a while since she ate. Thirsty, we offer her a cup and she takes it or refuses it. More, she taps us on the arm to indicate she's ready for another bite. Hello and all done are not words she uses too often. I hate to take away her "voice" but it sticks up quite a bit, weighs several pounds, and would be hard to replace if damaged or stolen. It does fold down when not in use, or could be left in our room if we changed our minds.
Next, glasses....she only wears them for up close tasks, and I'm really worried we will lose them if we bring them because we're not in the habit of having her wear them. But it might help her see things like the characters, animals, etc. Again, it would only be for those type of moments, and how much time will we have to prepare for, and then enjoy those moments?
Laxative powder, sippy cups, travel blankie, definitely bringing.
Okay, I guess that's everything. So from a practical standpoint what should I bring?

Off to make some baby blankets!!!

 

[Charleston Princess]

Have fun making baby blankets, and I hope that pneumonia leaves you soon! Chelsea had it back in November, and it wasn't fun!

 

[dawnbu40]

I hope you feel better quickly!

WDW will let you share plates at sit down restaurants just not at buffets (which I gues is obvious ) We shared meals at many restaurants during our visit last week (since we didn't get the food plan) and never had a problem and we were never charged a plate fee. The portions are very good sized at most places and easily shared.

 

[kellyw8863]

Oh no, I hope you're feeling better soon! We have what, 5...6 weeks? You NEED to get better!

I can't answer all of your questions, but we're kind of in the same spot regarding Ali's AFOs. We generally have her wear them for a couple of hours a day here, but she HATES them. The purpose is so she can't hyperextend her knees, but the trade off is that they limit her range of motion, which makes it hard for her to climb, even in and out of our van. And, I imagine that they will make her hot and sweaty - they do now and it's still cold here. We've also rented a stroller, so I imagine she won't be doing tons of walking anyhow.

I guess that's my long way of saying that I "think" we're going to leave them at home. I do plan on asking her PT what her thoughts are, but I think I know what my preference is.

 

[VroomVroomLightning]

I hope you start to feel better soon! I get bronchitis all the time and now I have to go see a lung specialist, so I know how you are feeling! Just take it easy (well as easy as you can with 2 kiddos!) Hope you feel better soon!

 

[pipersmom]

Hey hon! I'm sorry you're dealing with being sick on top of everything else! Hopefully the meds will kick in and you'll feel better soon.

I would definitely plan on sharing plates at any TS restaurants you do. The portions were more than big enough to share for you and Phoebe, or even you and DH! We didn't do any buffets except Akershus (they start with a cold buffet), so not sure what to tell you as far as that goes.

As far as rides go, there were a few with moving entrances that you will probably want to carry her onto just for safety, but there were plenty she would be able to walk up to as well. The question is how much it would tire her out to do that. There are neat playgrounds at the parks though, and I don't know about the character greetings..she could walk up to them easily, but would she be steady enough with all the hugging and such going on? Yanno..I don't know if I'm helping you out here or not..LOL!

I've read somewhere about someone who programmed their child's "talker" with character names and things to ask them. I don't know if Phoebe would get a kick out of that or not..ie, seeing a character and hitting the button with their piccie to say hello, but it might be something to think about. Okay, going to end this before I confuse you any further! Ohh..one more thing..if you think she would benefit from having her glasses..you could always put a retainer on them so that when she isn't wearing them, they're on her chest and easily accessible..I seem to remember you telling me she likes to explore things by mouth though, so I don't know if that would work. Okay..now that we're both confused.. Feel better!

 

[pnutallergymom]

Melissa, I hope you are feeling better!!! Hang in there!!

Here is my plan on all this "equipment stuff"!! I am bringing only what we absolutely need. Brigitte has her AFO's too and like most of the kids, HATES them!! I am of the school of thought that this is "vacation"....so I am letting her take a break and be as "normal" as she can for the duration while we are away. I am not bringing them....she deserves a break. One week of not wearing them isn't going to kill her, much less set her back. So, that is the approach I am taking with everything...at this point, I think the only thing I am taking with us is her feeding pump and her wheelchair. The rest of it will still be waiting for us when we get back. I have enough worries every single day, that I am not stressing about this stuff.

 

[TokyoDina]

For the glasses it would be good to take them. I know that they have those strings that you can attach to them so they won't fall off her neck and you can just slip them on when she needs them. I'm sure you already know that. I also think taking the wheel chair will be better. If I was a CM I'd understand but I think it would be best to ask them. Because it only says you can to be able to get out of the wheel chair. There isn't any time limits. They might just let her walk to the ride. I've seen plenty of people that use wheel chairs take longer than 30-45 seconds to get out of the ride and CM's didn't look too fazed.

Okay and the only other question I can answer is for the food. We have split plates between myself and DH do you guys have the dinning plan? I've done it many many many times cause sometimes for me it's just too much food! Or I'll just order an appitezer and then eat what DH is eating it's become harder now that I'm a veggie cause DH wants meat when we go out. But I've shared a plate with him in the past. I've never had any objections.

Wow next month!!!!! I'm so excited for you! I wish I could start packing! In a way I am cause I've picked out all my outfits just need a bag!

 

[NiniMorris]

When we go to Disney, we leave the AFOs at home. DS likes to wear his Mickey Crocs. Since he rides more than walks it isn't like it is hurting him. His OT and PT both think it is a good idea.

Of course each child is different, and your mileage may vary! I would just check with her therapist. If they feel there is no real reason to wear them on vacation, I would leave them at home.


....well I lied. We actually do take them with us, but we drive, so we have lots and lots of room for all kinds of stuff we never use! If I were FLYING, I'd leave them at home!


Nini

 

[xanphylus]

Definitely let her walk to the rides! It won't faze the CMs for anything. My dear, dear mother broke her foot last trip to Disney World (and yes- she broke it in the Magic Kingdom of all places...) and she, well- lets just says she was not very good at all on her crutches... She had to transfer from her wheelchair to the rides, and it took her a good 1-2 minutes to even get close to the ride, much less on it. They stopped the rides like Buzz Lightyear long enough for her to hobble to the ride, get on, pass her crutches to either me or DH, let us put them near her wheelchair and for us to get on the ride!! And they did all this with a smile! Don't worry about it.

From this experience, I say let her walk at her own pace and they will work around it.

 

[All7OfUs]

Hey Melissa,

yes, they will let you share meals, often splitting is for you in the kitchen. Portions are huge!!!

I can't answer any questions about Phoebe's stuff, except to say that whatever will make your life easier or her trip better- take! Of course, you'll have to weigh the costs of taking with you and being convenient/helpful, VS. not taking and being less burdened with stuff. Only you can really make that choice. Good luck

 

[jordanyosh]

Hope you are feeling better.

I agree with Liesa...anything that will make life easier and her time there better is great

 

[yinyanggirls]

More Big Gives!!! This one is from NiniMorris and also her little helper Brianna. Brianna wrote a very cute little note for Tessa (and "her sister").
I have to apologize now for the pics because they are horrible. On Saturday Tessa broke the lens cover and the wrist strap on our digital camera so I was using my phone to take these shots until I could figure out how to fix it. I was also babysitting that night so trying to get her to hold still was a lost cause. Just rest assured that even though I didn't capture it well, she LOVED this and the jumping and dancing around is due to her excitement over the dress.

The other girl didn't want to dance anymore so Tessa had to block her from the toys.

Thank you so much Nini!!! She loved it and so did I! I'm sure we can find a cute springtime T to go under it. (The long sleeve was what she was already wearing.)

 

[All7OfUs]

Another big dose of Disney kindness!!! Tessa is positively radiant!!