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

[Granna4679]

All I can say is WOW...those quilts are BEAUTIFUL! Way to go Sarah...you did a wonderful job!!

 

[yinyanggirls]

Tessa sat by me while we looked at the pictures and she is smiling from ear to ear! This was a dress that my Tessa wore to Disney last year. She only wore it 2 times (once at Disney and once for her 6th birthday). I hope it's okay that I gave you a "used" dress! It no longer fit her, but I had such wonderful memories of her wearing it. I couldn't bear to part with it! But, when I saw your Wish trip was coming up, I knew I had found the perfect recipient! I'm so glad that Tessa likes it! Thank you so much for the pictures!

Heather, I love hand-me-downs, but when they are gorgeous, custom, personalized hand-me-downs I love them even more!!! Anytime you have something you aren't sure what to do with, call me! I'd be happy to pay shipping for your talents to come our way.

The outfits keep on coming Nothing like little girls' dresses! I think you'll need to change clothes mid-day to get them all in huh?

Seriously, I was planning to take a change of clothes with us every day anyway, so it will work out perfect!

SO...the towel came from The Big Give?!?

So many people have giving hearts here that even some who haven't heard of the Big Give are being inspired to send the girls some pixie dust. I know other families have received some "unofficial" Gives as well. It's such a great feeling to know how much people care.

Just popping in! Great report so far. Pheobe is truly beautiful! My brother and best friend has MANY of the same conditions that she has except they are a bit more extreme and he needs 24 hr. care. When he was about 10 we did a wish trip too. He now just turned 25. I can't wait to keep up with this.

Thank you so much for following along! I can't help but wonder from time to time what life will be like down the road. It makes me smile to read that he is your best friend.

Ohhh okay. I was wondering I was having trouble with signing up for that...but I guess we'll just suck it up and get discount tickets on base. And when I say discount...I mean like $4.......not that much...

I'm sorry you guys missed the GAD sign ups. It went faster than anyone thought!

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.

Kelly, I'll PM you my email. I'd love to double check the crowds before we leave. Just in case.
I chose Project Linus because it was doable from any location (we had a hard time finding anything we all could do in our area) but also because I knew they were going to hospitals and foster kids, etc. Places our kids have experienced too, so I felt like we were giving back a little bit.

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

I called and bugged them to read the films again (the dr wasn't sure when I was there) and they downgraded me to bronchitis. The cough is still dragging on a bit, but at least I feel okay.

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.

Good to know! I think we will need to do that!

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 think we will skip them. Phoebe hyperextends her knees and also her ankles turn in, so they give her support, but WE give her support also so I think she'll be okay without.

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!

Yep, she eats her glasses if they aren't on her face, so I would have to keep them in a bag away from her. I think I will take them because they are small.
The talker I am seriously leaning towards leaving. It's just very big, heavy, expensive, to bring for only a couple of words.

Here is my plan on all this "equipment stuff"!! I am bringing only what we absolutely need. I have enough worries every single day, that I am not stressing about this stuff.

Thanks for your opinion. It does help me feel less guilty knowing others are leaving stuff home as well.

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.

I think we'll just play it by ear at each ride. If there's a huge line and the distance from chair to ride is too far we can carry her. Otherwise, I'll just let people growl at us as we let her walk. They can pay my chiropractor bill.

....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!

Excellent point, actually! When we drove to the funeral last month I did take her AFOs and her talker and didn't use either one. So I guess I have my answer!

Definitely let her walk to the rides! It won't faze the CMs for anything. From this experience, I say let her walk at her own pace and they will work around it.

I'm feeling more confident about this! Thanks!

Hope you are feeling better.

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

Thanks Jordan and Liesa. Sometimes you just need to hear someone else say it, ya know?

 

[that's nice]

I am so happy you are getting a camera before your trip!!! If nothing else auto is your friend.

Everything that the girls received is just awesome!!!!!!!!!!!!

Those quilts are amazing!!!!

I hope you pack a few empty bags... I hear Wish trippers could end up with a few goodies!!!

No problem sending the card. Glad you were able to read my writing. They don't make it easy to write on those postcards. It is like trying to write on plastic. BTW I've watched the princess movies numerous times... except for Mulan. Juliana never wanted to watch that one.

A few more weeks and you'll be there!!!!!

 

[xanphylus]

Those were the most amazing blankets ever!! I am sooo jealous! They are gorgeous. I wish I could make something like that! Maybe one day if the sewing machine ever likes me. But really- those blankets are really cool and I am so glad the girls love them already. PS- I like your shirt too!

 

[pacrosby]

Oh my goodness those quilts are just beautiful!!!! You are going to need alot of suitcases there girl!!! I can't believe your trip is so close. Are you planning some sort of send-off?

 

[kellyw8863]

Beautiful, beautiful blankets! I am just in awe at others' generosity. This whole experience has just been amazing.

I actually spoke with Ali's PT about the AFOs yesterday, and she said as a PT, she would like to see us bring them, but as a mother, she probably wouldn't bother, either. She said that a week definitely won't hurt her unless she fatigues more without them. So, we're going to leave them home, guilt free. Just thought I'd share what she said in case you're going back and forth.

 

[yinyanggirls]

I love seeing all the pics of Phoebe standing!!!

Thanks! Phoebe's gotten pretty good at standing lately, but it's just so hard to take a pic of her while helping her or making sure she doesn't let go and fall.


Tessa is such a little firecracker!!! She must keep you on your toes!!!!

You have NO IDEA!

So glad she liked the dress...(although looking at the photos it looks like it might be a tad too tight under the arms...) Brianna liked helping with this one because she noticed that Tessa is 'chocolate' like her. (to an adult, that means biracial in a white household!). It is the first time we have only done a Give for one child in the family and she was afraid Tessa's "sister" might feel left out, so she included a note. She snuck it in so I didn't have a chance to read it.

I love that Brianna helped with this project. I think this whole experience has contributed to Tessa believing that everyone is her friend. Strangers are sending her gifts and writing her letters. Wherever we go she sees kids and says "look there's some friends!".

(good thing I bought extra fabric, my 2 year old grand daughter thought it was for her and is VERY upset that I didn't make it for her... LOL)

How funny!

Wow, some more great gifts. Those crayon roll ups must be awesome for the plane! I know when we flew we took crayons and had to search around down below for some that dropped.

I'd never seen them before the DIS but they're such a great idea! I think it's funny that Tessa was so excited to see it.

Getting close now Are you more excited or nervous....................or both???? Have you pretty much finalized all your planning? You guys really are going to have such a great time!

I'm kind of in shock at the moment at how close we are. 3 weeks!!! How did that happen? I'm starting to get nervous. I felt like the GKTW plans were pretty much done so I moved on to planning out second week in Savannah and Charleston. That's been fun but challenging in it's own way. I want to take a month long vacation because there's just not enough time to do everything! Of course all of the recently returned trippers are warning us to say goodbye to the plans!

I found my sunglasses. How's that for planning and preparation? Am I done?
Will plan. Or just piggyback off your plans (as we are going at the exact same time).

Ann, just read my last line above. Want me to email you my calendar? All you need to do is change our ADR confirmation number to yours. It could be a test. If TWO families attempt the same itinerary, would it increase the odds of said plans being followed?

Juat checking in.. been thinking about ya.. Hope your cold is gone

Thanks for checking on me! I'm feeling pretty good. The cough is just lingering and now Phoebe is coughing again??? Hoping I'm just paranoid.

I just finished reading your entire pre-trip (in one day! )

WOW!!! Thanks!

I am surprised at your flights though. Southwest flys from Arizona to New Orleans, to Orlando. with a stop in Houston, but you don't have to change in Houston. I know this route well, as I send guys to Oakland every year for training and they often stop off there. Seems the straight route would have been much better and way less chance of a weather related delay for you.

I'm with you, it makes no sense to me. My best guess is that someone at MAW just typed in the destination and chose the cheapest flight. I've always wanted to visit Chicago, just didn't realize I wouldn't get outside the airport.

We just rented Princess and the frog and didnt have a problem with it.

Hmmmm, well then maybe I'll try exchanging it. It's so weird I thought I was imagining it but it happens every time we play it.

Yay! on getting some travel shopping done. I think I saw lotion in there but just in case, make sure to take some. We had to make a Wal Mart trip twice for lotion. The air was so dry our skin was literally cracking. Hopefully it's better by the time you guys go.

Now THAT's surprising! You live in such a humid area and I thought FL was humid all year. We live in virtually NO humidity so if for some reason it is dry when we go, it probably won't be a shock to our skin. I keep hand cream next to the soap because your fingers get cracks in them here. I was expecting it to be so humid in comparison. I can't wait until I can get the ten day forecast for our dates!

Hi Melissa! I am new around here, but I thought I would jump in and follow! Your family is beautiful. Looks like you are ready! What amazing BIG GIVE gifts!!

Laura!!! I just opened up your PTR so I can go read it now.

I'm so sorry for all of the struggles Phoebe has endured. I can feel for you on the no diagnosis thing, as we are the same way. But, we just go one day at a time, one problem at a time, one doctor's visit at a time. We have had our share of genetics "negatives", and I have pretty much given up on an over all answer. It's all about living in the moment and loving every day, blessed with whatever we are given.

You're so right! It took a few years for us to grasp the idea that science did NOT have all the answers. But now we just love her for who she is, and because of who she is.

I am so happy you are getting a camera before your trip!!!

YES!!! Tim (my Tim, lol) decided that we need a little point and shoot for the family outings as well as my DSLR. So I gave up trying to research and decide and told him today to just get one for me. He did a little shopping and some consumer report reading and ordered a Nikon Coolpix through Amazon today. I read about it after he ordered it and it sounds like it's got some cool features. I've loved my Nikon before so now if I get a Canon DSLR I won't feel too bad changing brands.

BTW I've watched the princess movies numerous times... except for Mulan. Juliana never wanted to watch that one.

Tessa has a few that she just never seemed interested in until we "made" her watch them. When we had to drive to the funeral I told her every once in a while it was "Phoebe's turn" to choose a movie and then I'd put in a new one. She now loves (because I "made" her) Lilo and Stitch and Mulan.

I wish I could make something like that! Maybe one day if the sewing machine ever likes me. !

I know! Me too! I bought a sewing machine a few years ago and then it got all tangled and it's been in the box ever since.

Oh my goodness those quilts are just beautiful!!!! You are going to need alot of suitcases there girl!!! I can't believe your trip is so close. Are you planning some sort of send-off?

Hadn't thought much about it. I guess I was waiting until "closer" to see if MAW mentioned anything. Last week the coordinator told me on FB that she just requested our check. So I guess we get one. It was never mentioned before so I wasn't sure. We don't have any family here so I can't imagine doing much.

I actually spoke with Ali's PT about the AFOs yesterday, and she said as a PT, she would like to see us bring them, but as a mother, she probably wouldn't bother, either. She said that a week definitely won't hurt her unless she fatigues more without them. So, we're going to leave them home, guilt free. Just thought I'd share what she said in case you're going back and forth.

That's funny that she admitted it. Gotta love an honest professional. It will probably linger in my mind until I am doing the final packing and then I won't have room.

 

[cantwaittoseemickey]

I love the quilts. Those are definately something to remember this wonderful trip by. They are a keepsake in and of themselves What a wonderful idea. The Big Giver did a beautiful job!

I cannot believe your trip is so close. It is so very hard to wait on the longer trips. Im glad the time is finally just about here

 

[Mtopher4]

Oh My Gosh!!!! Those quilts are Absolutely AMAZING!!!!! Beautiful!!!!!!

WOW.. The Big Give ROCKS!!!!

 

[that's nice]

Figured I'd stop by and do a little dance for you guys! Say good-bye to the 20's and hello to the teens!!!!!!!!!!!!!







arty: arty:

 

[yinyanggirls]

Tim, you're giving me a heart attack!!! Stop counting my days for me! j/k I probably need the reality check because I tend to forget the number. Hopefully I'll be all set to go!

Yesterday I returned some clothes that I just didn't like (why do I keep ordering clothes online?), found a decent bathing suit (UGH), went shoe shopping for DH and found some for me instead. Anyone remember the photos from my last shoe shopping trip? I was at DSW and checked the clearance rack just in case and found the last pair, in my size, of the Born "thongs" that I liked. Woohoo! I saved liked 30 bucks! I figure I can wear them on the shorter days where we won't do quite as much walking. Then my other pair can rest.

I found another rental car deal...209/week for a minivan. I'm still hoping to find a SUV for a good deal because it would be fun to try something we don't already own, but money is the bottom line. I reserved our hotel for 4/23, the day we leave GKTW, in St Augustine. I never knew about this whole historic area, lighthouse, etc so we will explore that a little bit before continuing north to Savannah and Charleston. I'm still playing around with the accommodations there but there are some great choices and I'm actually willing to spend a little more just to be in the great locations. Plus, for this portion of the trip my best friend will be with us and paying 1/3 of the hotel bills.

Now I need to make a list so I don't forget to do anything. Haircuts for all, pedi for me, maps, GPS, learn how to use new camera once it arrives....

Thankfully Phoebe goes back to school tomorrow, but I teach preschool at my house two of the next 3 weeks. Also, my parents are talking about visiting sometime soon. It will be an interesting 3 weeks. Thankfully all the Big Give stuff is already packed!

 

[dawnbu40]

YAY for 3 weeks! The time will fly by!

for the Borns! They are my favorite brand of shoe. They can be pricey but they last for years and are so comfortable!

 

[that's nice]

Tim, you're giving me a heart attack!!! Stop counting my days for me! j/k I probably need the reality check because I tend to forget the number. Hopefully I'll be all set to go!

I'm sorry.

I'm getting so excited for you guys!!!!!!!

I found another rental car deal...209/week for a minivan. I'm still hoping to find a SUV for a good deal because it would be fun to try something we don't already own, but money is the bottom line.

209 isn't a bad price but don't forget to add another $50-$75 on for taxes. Keep searching.. while driving something different is fun, it might be more expensive.

 

[xanphylus]

I never knew about this whole historic area, lighthouse, etc so we will explore that a little bit before continuing north to Savannah and Charleston.

I love Charleston!!! As a matter of fact, I was born there and still have most of my family there!! That's cool that you are heading over that way. Be sure to hit the old slave market downtown. My DD loved the shopping in the little booths and stuff. And the battery is such a cool place to wander around and see all the houses on Rainbow Row- all the houses are painted different colors like the rainbow! And you can take a carriage ride or just let the kids climb around on the old cannons and stuff. If you feel really historical, hit one of the old forts! We used to go to Fort Sumter every summer and its really neat- and a great energy burner for the kiddos.

I dunno much about Savannah- even though I live in GA, I have never been there! I always go to Charleston instead! You guys will have a blast there! And the beaches are soooo pretty there. Try Mt. Pleasant or Sullivan's Island! (I'm partial to them as family lives in both places.... ) but all of Charleston is cool in my book!

 

[All7OfUs]

If you"re down to scheduling a pedi, then you're ALMOST THERE!!

Make that list and check it twice!

 

[Charleston Princess]

St. Augustine is a pretty little town! The fort and the historic area are very cool. Of course, you already know how I feel about Savannah and Charleston.

 

[pacrosby]

Re: all those well thought out plans getting tossed out the window. I think that those of you who have had the luxury of continuing to plan while others have been and returned have a better chance of sticking to your 'rough' itinerary. What I mean is you have been warned about trying to do 'to much' many times over; encouraged to make sure you pen in lots of time to 'play' at GKTW; etc.

Of course, the big question is.....................did you listen




I hope that when you do your TR you'll include specifics about the extended portion of your trip too?

 

[TokyoDina]

Wow 3 weeks>!?!?!? you'll be there before you know it! I'm so excited for you`~!!!!!!!

 

[yinyanggirls]

We got another fun package over the weekend from Krysta. I cut the box open and set it next to Phoebe but Tessa got mad that Phoebe was "grabbing" in it. She's still learning that Phoebe does things for different reasons than she might.

Phoebe got some of the items out anyway.

It's a box chock full of fun, colorful bows and headbands! Tessa chose a favorite. (the yellow flower was already in her hair)

Krystal's note explained that the bows can be attached to the headbands or worn separately. They are SO cute!

My favorite one is the Winnie the Pooh, although they are all adorable!

Thank you so much Krysta!!! They are amazingly cute, and so fancy. The girls had fun going through all the combos and choosing favorites. They are going to look so cute with all the new clothes they have!

 

[jordanyosh]

wow...more stuff......

at the rate you're going, the girls will have more costume changes than a janet jackson concert...