Piper's Practically Perfect PTR..Wish Trip! 3/2-8...Upd Pg 126- TR Link!! Hooray!

[jordanyosh]

Sorry to hear about Piper. Hopefully she will get well soon.

I'm excited about the Big Give, but I have no idea what I'm excited about.

 

[pipersmom]

Sorry to hear about Piper. Hopefully she will get well soon.

I'm excited about the Big Give, but I have no idea what I'm excited about.

Thank you, Jordan I had to look up a better explanation for the Big Give than I can give you, mine would prob be all rambly and hard to follow since I'm still so excited.. so here's one from the wish tripper's thread.... (thanks, Maroo!)

"The Big Give was inspired by Oprah's Big Give (the TV show). It is a group of ladies and men on the DISboards that make custom clothes for families that need some pixie dust. It started with an active DISer that lost a son in a drunk driving accident only days after returning from Disney World. When it was time for their family to go back to Disney, the DISboutiquers made the family clothes to help make their trip extra special.

This first Give went so well, that they have continued the tradition. Now they mainly select Wish Families.

The Big Give is not in any way affiliated with MAW, Disney, GKTW or even officially by the DISboards. It is just a group of very kind ladies and men that just want to bless families that they come to know on the DIS. It is a completely volunteer thing.

The organizers try to include every single MAW family that they "meet" and get to know on the DIS. (I am not an organizer - Lauren was actually a recipient and I now try to give back to future Gives.)

However, it is impossible to include every family. They have to have a good amount of time to organize it (so if your trip is right around the corner, then they would not be able to do one). And these ladies have families, etc and sometimes life just gets in the way of being able to organize during certain times of the year, vacation, illness, etc, can all factor in to whether they can do a give at any given time.

Anyway...You may see the term "Big Give" in Pre-Trip reports and occasionally on the Wish Trippers thread...and that is what it means! "

 

[jordanyosh]

how cool is that?

 

[manntra]

I looked it up Jordan...I had no idea what I was excited about either and I must say I laughed right out loud at your post
Thanks for setting us straight Amanda...after I looked it up I was thinking I got it right
It's a wonderful idea and such a wonderful gift

Tracy

 

[cantwaittoseemickey]

How wonderful to be chosen for the BIG GIVE
I wasnt completely sure what that was till you posted it. I have seen things on other posts that is so great!!

I am so sorry to hear Piper needs an IV. I hope it isnt for very long. I am sending her lots of cyber hugs.

 

[pipersmom]

how cool is that?

I looked it up Jordan...I had no idea what I was excited about either and I must say I laughed right out loud at your post
Thanks for setting us straight Amanda...after I looked it up I was thinking I got it right
It's a wonderful idea and such a wonderful gift

Tracy

I shouldn't have taken it for granted that everyone would know why I was so excited, lol. Piper is just going to be so thrilled as each package comes in the mail..I can't wait! And now you guys are reeeeeally going to get slammed with pictures, LOL.

How wonderful to be chosen for the BIG GIVE
I wasnt completely sure what that was till you posted it. I have seen things on other posts that is so great!!

I am so sorry to hear Piper needs an IV. I hope it isnt for very long. I am sending her lots of cyber hugs.

Thanks, hon. She'll stay on the IVs for prob 3 weeks, and it's two different meds, vancomycin and meropenem. The vanc in particular is a pretty hard hitting drug, but they usually seem to do the trick! No bugs going to Disney with us, tyvm!

 

[cantwaittoseemickey]

ohh Vanco that is a hard one. Ty has been on that several times and we have to treat with benedryl for the red man's sydrome. He also does it with Rifampin as well. Does she have that reaction? I hope not.

 

[pipersmom]

Okay, I was happy you mentioned the vanc...I think I was having a blonde moment. She's doing Linezolid and not vanc. She gets red man's to the point of having HUGE welts all over her body..the itching, etc, and not just on her upper body, unfortunately. The Lino is a pain in the butt because of dietary restrictions (no smoked foods, choccy, caffeine, msg, cheese, etc) but it doesn't make her miserable like the vanc does. They've talked about doing a tolerance protocol eventually, but we've been trying to put that off until we absolutely have to. I don't think we've ever done rifampin..we just found out she apparently can't do cipro..and we used to have a problem with bactrim, but that one went away, thank goodness.

 

[cantwaittoseemickey]

I have heard of the "L" one but Ty has not been on it. I didnt realise there were certain things to avoid with that. That has to be hard. Ty is allergic to Sulfa so bactrim is out but it has been the med of choice with alot of his infections but he couldnt use it. Hopefully this will keep any problems away for her trip. Please give her a hug for me(even though she doesnt know me )

 

[eliz991]

I shouldn't have taken it for granted that everyone would know why I was so excited, lol. Piper is just going to be so thrilled as each package comes in the mail..I can't wait! And now you guys are reeeeeally going to get slammed with pictures, LOL.

Thanks, hon. She'll stay on the IVs for prob 3 weeks, and it's two different meds, vancomycin and meropenem. The vanc in particular is a pretty hard hitting drug, but they usually seem to do the trick! No bugs going to Disney with us, tyvm!

How cool! I'm glad Jordan asked because I didn't know what it was either. You and Piper deserve lots of pixie dust and I can't wait to see what she gets!

Hugs to you and Piper and I hope your new year has been happy so far ~ you deserve it! Go away bugs!

 

[maroo]

I am so excited that you guys are getting a Give!!

And I love the fact that some of you guys had no idea what it was until Piper and Amanda were included!

If you want to get involved somehow...send me a PM...we always need more people to help...and you don't have to know how to sew! I certainly don't!

 

[kimmylaj]

i'm little late, but that is typical for me
piper is absolutely adorable and your new years post made me a little teary. (also typical for me).
i love your interview with piper
and the elf and asking about his medical needs , it is so sweet. what a thoughtful little girl. cant wait to hear more. as far as dhs for ak or both, i 'm not sure if you have decided yet but i would just go to disney hollywood studios but i am not a big animal kingdom fan as a matter of fact i have skipped it on 2 prior trips.

 

[pipersmom]

I have heard of the "L" one but Ty has not been on it. I didnt realise there were certain things to avoid with that. That has to be hard. Ty is allergic to Sulfa so bactrim is out but it has been the med of choice with alot of his infections but he couldnt use it. Hopefully this will keep any problems away for her trip. Please give her a hug for me(even though she doesnt know me )

I'm just glad she wasn't on it during the holidays, as we do ham for Christmas..and finding some that hasn't been smoked..umm..have fun with that! LOL. We couldn't use Bactrim with Piper for two yrs, the Drs wanted to try it again about a year ago, so we did..and bam! no allergic symptoms at all. It was kind of annoying because we had the allergy listed on her med alert bracelet, lol. I'm really hoping this will keep her clean too, my original goal had been to do an IV run in mid Feb, and now it will be best not to do that right on top of the last one.

How cool! I'm glad Jordan asked because I didn't know what it was either. You and Piper deserve lots of pixie dust and I can't wait to see what she gets!

Hugs to you and Piper and I hope your new year has been happy so far ~ you deserve it! Go away bugs!

Thank you so much, Elizabeth! I'll post lots of piccies once the boxes start coming in!

I am so excited that you guys are getting a Give!!

And I love the fact that some of you guys had no idea what it was until Piper and Amanda were included!

If you want to get involved somehow...send me a PM...we always need more people to help...and you don't have to know how to sew! I certainly don't!

Maroo, I am beyond excited, and I think it's neat more people are learning about it through our PTR! I hope you get some PMs, I'm hoping to get involved when we get back

i'm little late, but that is typical for me
piper is absolutely adorable and your new years post made me a little teary. (also typical for me).
i love your interview with piper
and the elf and asking about his medical needs , it is so sweet. what a thoughtful little girl. cant wait to hear more. as far as dhs for ak or both, i 'm not sure if you have decided yet but i would just go to disney hollywood studios but i am not a big animal kingdom fan as a matter of fact i have skipped it on 2 prior trips.

Kim, thank you for coming to read along with us! Piper really is just a good girl. We're going to do AK in the am, then move on to DHS after lunch or whenever Piper is ready. We have adr's at Rainforest Cafe, which I think she's going to love! There are def some rides she wants to hit at DHS though, and we want to see Fantasmic! that night

 

[Sleepingbooty]

Hi Amanda! I just found your ptr and read through it today (thanks for all the chapter links - I have to figure out how to do that on mine!). What a great story! I'm so glad for you and Piper to be getting a Wish trip - it sounds like it is going to be the trip of a lifetime! I only read your links, not the chit chat in between, so I didn't hear: did you reveal the trip to Piper on Christmas? How did she react? I bet that was an awesome moment!

 

[punkin413]

I'm excited about the Big Give, but I have no idea what I'm excited about.

this is exactly what i was getting ready to say!

thanks for the explanation. sounds like a really great program! so glad piper gets to be a part of it!

 

[MaryAz]

Sorry about the IV's-glad you can do them at home! I am so excited about the Big Give-kept checking the website for your name to pop up and then ther it was. I just want to add that like Maroo-I do not sew or am I very crafty. I joined and send "pixie dust". Whooo Hooo, can't wait to see all the cute stuff and boy is there going to be some cute stuff

 

[pipersmom]

Hi Amanda! I just found your ptr and read through it today (thanks for all the chapter links - I have to figure out how to do that on mine!). What a great story! I'm so glad for you and Piper to be getting a Wish trip - it sounds like it is going to be the trip of a lifetime! I only read your links, not the chit chat in between, so I didn't hear: did you reveal the trip to Piper on Christmas? How did she react? I bet that was an awesome moment!

Thank you for coming over! We are so looking forward to this trip, I can't even tell you how much! The chapter links actually were pretty easy, if you want to, shoot me a pm and I'll tell you how I did ours. Now I'm going to have to look at the links though, lol..because there's an update that includes pics of her on Christmas and video, and one that explains how she reacted..she was still sick, so her reactions were muted, but everyone else has told me they can see she's excited on the video, so. It was a very cool moment. She can now tell you exactly how many days left at any given moment! (57 as of today)!

this is exactly what i was getting ready to say!

thanks for the explanation. sounds like a really great program! so glad piper gets to be a part of it!

Thank you, Dawn! I feel very lucky that we're receiving a Give..and I know Piper will too once I tell her about it tomorrow.

 

[pipersmom]

Sorry about the IV's-glad you can do them at home! I am so excited about the Big Give-kept checking the website for your name to pop up and then ther it was. I just want to add that like Maroo-I do not sew or am I very crafty. I joined and send "pixie dust". Whooo Hooo, can't wait to see all the cute stuff and boy is there going to be some cute stuff

Thank you, Mary I'm very glad we're going to be home, it just throws things off whack a lot less this way! Now, I have to admit..I am not good with surprises, I'm going to be just as excited as Piper when a box comes..especially knowing some of you guys already know what's being done for her!! Things like this kill me- (in a great way!)

 

[Lady Lallie]

So on Saturday I happened to notice I had a pm..when I opened it I wasn't real sure who would be messaging me..turns out it was Heather Sue from ....The Big Give!! asking if we would be interested in receiving a give. I really had to hem and haw over this, wasn't sure if it was something we wanted to be associated with..... YEAH RIGHT! I was so completely excited it wasn't even funny. I got the ppwk done lickety-split..maybe too lickety-split..Heather Sue said it was the fastest she'd ever gotten ppwk back! I had read about the Big Give in several reports, and was secretly hoping they would want to do a give for Piper, but was trying not to get my hopes up. I haven't told Piper yet..she asked why I was measuring her..and mean mommy that I am said.."If it was something you needed to know, you would know." : Actually I'm just keeping it in my pocket for a bad day..it's looking like we are going to end up on IVs, I'm just glad we got through the holidays first. She's back on O2, and 3 ltrs to keep her just at 92. We're waiting on a call back now, and I'll update as soon as we know more. In the meantime...thank you again Heather Sue, and any Big Givers that might be reading this..I am completely excited, and I know Piper will be also!

Oh I am SO excited for you!!!

 

[pipersmom]

Thank you, Leslie!! I was dancing around the house all weekend I was so excited! Lucky for me Piper knows I'm crazy, so she didn't ask why I was doing all the dancing!