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

[billwendy]

OOoohhhhh Amanda - I CANT WAIT!!!!!!! WOO HOO~!!!

 

[MaryAz]

Oh my goodness, such cute stuff for such a cute girl! Your trip is getting so close!!

 

[pipersmom]

Mary, there should be an update for you tomorrow too..they're going faster now that I figured out the RIGHT way to put them up, LOL. We loved and appreciated what you sent so much, but I don't want to spoil it so I'll stop there!

 

[pipersmom]

Okay, last post before bed! This package was from Dawn & Caitlin, they more things for her to do in the hospital and should TRULY be the last hospital one, LOL. Thank you all for bearing with me!

Opening the package:

Reading the note:

Ohhh...magic ink..these are always a huge hit with Piper!

Ohh..new slipper socks..these are very cute, we loved them, but still kind of big, so I've put them away for her, much to her chagrin! I figured if I let her wear them she would be bound to fall and break something right before the trip, and I'm not tempting Murphy that much! LOL.

And all the booty...

Thank you all so much! Piper has already finished the Incredibles Magic Ink book, and wanted to save the Monsters, Inc stuff for the trip. We can't wait to meet you...the trips are coming up soooo fast!

 

[Momofwishkid]

Great updates Amanda! Piper you got such wonderful gifts, Im glad they made your hospital stay a little easier.

 

[yinyanggirls]

Love the smiles on Piper's face. You guys were good sports waiting out the hospital stay.

 

[dawnbu40]

Love the pics of all the cards! It's great how many people were thinking of Piper and wishing her a speedy recovery! Also- love the Big Give stuff. Piper will be the best dressed girl in WDW

And can you believe in just over 2 weeks we'll be in WDW Can't wait to meet you guys

 

[pipersmom]

Great updates Amanda! Piper you got such wonderful gifts, Im glad they made your hospital stay a little easier.

They did make them easier! Lots more updates in the next couple of days.

Love the smiles on Piper's face. You guys were good sports waiting out the hospital stay.

Honestly, when I started getting down all it took was thinking about the families that had been there for monthes. At the same time though, it always amazes me how many parents that don't stay with or visit their kids daily. I do realize people have to work, I just couldn't do that.

Love the pics of all the cards! It's great how many people were thinking of Piper and wishing her a speedy recovery! Also- love the Big Give stuff. Piper will be the best dressed girl in WDW

And can you believe in just over 2 weeks we'll be in WDW Can't wait to meet you guys

It was very incredible! And I think Piper will be the best dressed :. Tomorrow is two weeks exactly for us..I might be freaking out a little at this point...

 

[noahsketomom]

Amanda,
I am sooooooo happy Piper and you are back home!!

I am amazed at all the wonderful Big Give gifts (WOW WOW WOW!) AND also that you have found the time to upload so many pics!!!!

Thanks for sharing so much and allowing us to follow along with your journey!

Thinking of you guys and praying for a WONDERFUL, amazing, pixiedust-filled trip!!!!!

Blessings to you and yours,

 

[pipersmom]

Thank you so much, Beth! I appreciate what the Big Give is doing for Piper more than I could say, the least I feel I can do is get the updates done as soon as I can. It was killing me not being able to update while she was in the hospital! We're enjoying this process so much, it almost makes me want to have longer before we leave! LOL. Okay, maybe not, I think Miss Piper would kill me...

 

[kellyw8863]

I LOVE all the pictures, especially how thoughtful Piper is as she reads all of the notes, cards, and letters. You guys are getting sooooo close! How is Piper feeling these days?

 

[Wee Annie]

I thought I was subscribed to your PTR, but apparently not! Better late than never, I always say!!

Love seeing the Big Give pictures, and Piper is absolutely adorable! Looking forward to your trip!

Ann

 

[Granna4679]

Amanda and Piper -
I am so happy you received the package and that the outfit fits well. Thank you for posting all of the pictures. I had tears in my eyes when I saw the pictures and that the outfit looked so cute on her. This was my first time to do a BIG GIVE but it has truly blessed me to do that for Piper. I have two more coming up that I am working on. I am so glad I found out about the BIG GIVES and that I can contribute.

I read your post about the other families not staying at the hospital with their children. My youngest (now 23) was in the hospital when she was 8 months for a full month with a bone infection. I was also amazed at the children that were there alone. I worked then too but had to take off the whole month and be with her. I couldn't leave her there either. It was a huge sacrifice financially but it was the only way I could cope with it. I pray that God blesses and blesses you for the sacrifice you make to be with Piper. She is a beautiful little girl and even though I don't know you personally, I feel like I do. I will continue to keep both of you in my prayers.

Enjoy your trip. We were there in December and had the times of our lives. I know you will too. Congrats on all the beautiful outfits and Pixie dust coming your way (oh and for the send off party and the penguin meet also). Sounds like a MAGICAL Trip in the making.

 

[englishrose47]

Good Morning Amanda and Piper !!! Loving all the GIFTS!!!!

 

[eandesmom]

Love all the pics and the gifts it is so fun to "watch" Piper open them!

 

[yinyanggirls]

Honestly, when I started getting down all it took was thinking about the families that had been there for monthes. At the same time though, it always amazes me how many parents that don't stay with or visit their kids daily. I do realize people have to work, I just couldn't do that.

When Phoebe had RSV she was hospitalized for a week because her sats were too low. We had a shared room, only kids with RSV, of course, and they would come and go in a day or two while we sat around waiting for Phoebe to get over it. Anyway, I slept on the window sill cushion every night. Uncomfortable, yes, but I was barely willing to leave the room to shower once that week, and I was completely unwilling to go down to the cafeteria for food. (We were out of state at the time and were only able to have one visit from family members so no relief either.) Anyway.....Phoebe was 4 months old at the time. There was a newborn that came in, the parents got him settled and then left. I never talked to them so I don't know their personal situation but I did see two parents. They never returned until he was released two days later. Maybe they had serious problems at home to deal with, maybe they thought it was free babysitting? All I know is that when his pulse-ox was beeping I had to ring for the nurses because there was no one else to do it for him. I thought it was so sad.

This was my first time to do a BIG GIVE but it has truly blessed me to do that for Piper. I have two more coming up that I am working on. I am so glad I found out about the BIG GIVES and that I can contribute.

I'm not "kissing up", I swear! But I just had to say that reading this, about how glad you are to have found the Big Gives, made me teary-eyed. It is not so much the "stuff" that makes it wonderful to be part of the Gives, but the love that inspires them. So thank YOU for becoming part of them.

 

[StefaniLyn]

So glad to hear that you guys are home from Club Med. What a long extended stay, but it's so wonderful that Piper has such an amazing mommy who will stay by her side and keep her entertained the entire time! Thank you for sharing the amazing photos of the Big Give extravaganza. The gifts are as always incredible and so creative!

I can't believe your trip is now just 2 weeks away!!! Where has all the time gone??? Are you busy packing yet? Making lists, and checking them twice? Have fun and both of you stay healthy! I can't wait to read more!!

 

[froggy33]

And a much better pairing, though I still may try to look and find something else to go with it...

That was me. I totally forgot to put a note in I was so worried about getting it shipped out! My husband shipped it for me from work. I didn't even think about the fact that people may think it was infusion supplies! I'm glad she liked it. I made it "pretty colors" (instead of just white) so that she could wear it by itself or under dresses to make them fluffy! Also, just to let you know the waist band is adjustable, so it should fit for a while!

I hope you have a wonderful time on your trip!!! Won't it be nice to get away from all the cold and snow?!

Jessica

 

[pipersmom]

I LOVE all the pictures, especially how thoughtful Piper is as she reads all of the notes, cards, and letters. You guys are getting sooooo close! How is Piper feeling these days?

Thank you, Kelly! Piper is doing well, her lung function is at about 61%..hoping it will go up more before the trip, but it's much better than 31% ! She actually went out and played in the snow for about 30 min yesterday..I have to admit I'm being over-protective right now, I want her good and healthy for the trip!

I thought I was subscribed to your PTR, but apparently not! Better late than never, I always say!!

Love seeing the Big Give pictures, and Piper is absolutely adorable! Looking forward to your trip!

Ann

Ann, and thank you! The trip is coming up on us waaaay too quickly!

Amanda and Piper -
I am so happy you received the package and that the outfit fits well. Thank you for posting all of the pictures. I had tears in my eyes when I saw the pictures and that the outfit looked so cute on her. This was my first time to do a BIG GIVE but it has truly blessed me to do that for Piper. I have two more coming up that I am working on. I am so glad I found out about the BIG GIVES and that I can contribute.

I read your post about the other families not staying at the hospital with their children. My youngest (now 23) was in the hospital when she was 8 months for a full month with a bone infection. I was also amazed at the children that were there alone. I worked then too but had to take off the whole month and be with her. I couldn't leave her there either. It was a huge sacrifice financially but it was the only way I could cope with it. I pray that God blesses and blesses you for the sacrifice you make to be with Piper. She is a beautiful little girl and even though I don't know you personally, I feel like I do. I will continue to keep both of you in my prayers.

Enjoy your trip. We were there in December and had the times of our lives. I know you will too. Congrats on all the beautiful outfits and Pixie dust coming your way (oh and for the send off party and the penguin meet also). Sounds like a MAGICAL Trip in the making.

Thank you so much, Anita..we both absolutely love the outfit and headband, you did such a wonderful job! She just looks adorable in it. It's so neat to be the first Give so many people have done, I'm hoping to get involved once our trip is done and the dust has settled! I truly understand people who can't stay at the hospital, but it's never been an option for me, especially knowing she probably won't have a typical lifespan. Thank you for the kind words and prayers, they truly help. This trip is going to be so wonderful for us..we can't wait!

Good Morning Amanda and Piper !!! Loving all the GIFTS!!!!

Thank you, Rosie!

Love all the pics and the gifts it is so fun to "watch" Piper open them!

Thank you, Cynthia..I'm uploading more as I type this, I should have 3 or 4 more updates up shortly

 

[pipersmom]

When Phoebe had RSV she was hospitalized for a week because her sats were too low. We had a shared room, only kids with RSV, of course, and they would come and go in a day or two while we sat around waiting for Phoebe to get over it. Anyway, I slept on the window sill cushion every night. Uncomfortable, yes, but I was barely willing to leave the room to shower once that week, and I was completely unwilling to go down to the cafeteria for food. (We were out of state at the time and were only able to have one visit from family members so no relief either.) Anyway.....Phoebe was 4 months old at the time. There was a newborn that came in, the parents got him settled and then left. I never talked to them so I don't know their personal situation but I did see two parents. They never returned until he was released two days later. Maybe they had serious problems at home to deal with, maybe they thought it was free babysitting? All I know is that when his pulse-ox was beeping I had to ring for the nurses because there was no one else to do it for him. I thought it was so sad.





I'm not "kissing up", I swear! But I just had to say that reading this, about how glad you are to have found the Big Gives, made me teary-eyed. It is not so much the "stuff" that makes it wonderful to be part of the Gives, but the love that inspires them. So thank YOU for becoming part of them.

Melissa, it doesn't surprise me anymore, because I saw the same thing on the infants unit when Piper was diagnosed. Before we knew it was CF she was in a room with about 5 other cribs in it, some had parents there a lot, and some didn't. I'm with you, I don't know what the circumstances were, but when one of the babies alone would start crying, it took everything I had not to pick them up! It was heartbreaking to me.

I also completely agree with you, what makes me cry as Piper opens her packages is that so many people have taken her into their hearts, and "adopted her" as I would explain it to the Nurses and such at the hospital. It has truly blessed us soooo much.

So glad to hear that you guys are home from Club Med. What a long extended stay, but it's so wonderful that Piper has such an amazing mommy who will stay by her side and keep her entertained the entire time! Thank you for sharing the amazing photos of the Big Give extravaganza. The gifts are as always incredible and so creative!

I can't believe your trip is now just 2 weeks away!!! Where has all the time gone??? Are you busy packing yet? Making lists, and checking them twice? Have fun and both of you stay healthy! I can't wait to read more!!

I have not started packing or made a list *bad mommy*. I did look at the ultimate packing list, and it scared me so badly I clicked it shut pdq! I'll prob get started a bit later in the week when all the updates are done. :

That was me. I totally forgot to put a note in I was so worried about getting it shipped out! My husband shipped it for me from work. I didn't even think about the fact that people may think it was infusion supplies! I'm glad she liked it. I made it "pretty colors" (instead of just white) so that she could wear it by itself or under dresses to make them fluffy! Also, just to let you know the waist band is adjustable, so it should fit for a while!

I hope you have a wonderful time on your trip!!! Won't it be nice to get away from all the cold and snow?!

Jessica

Jessica, thank you so much! A normal family prob wouldn't have thought about the infusion thing, but Piper stays on so many meds..LOL. I was just afraid that either I or my mom had lost a note! I'm glad it wasn't that. At any rate, we LOVE the petti-skirt, and I did notice the drawstring waist, which is awesome! Let me ask you though..when I wash it, should I just throw it in a pillowcase? I do that with a lot of delicates and it seems to work well, but I wasn't sure?

It's snowing hard right now as I type this, and it will be wonderful to get away with it..I'm just hoping FL gets a lot warmer than what it has been lately..at least mid-high 60's would be nice!