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

[StefaniLyn]

So sorry to hear about Piper's latest test results. Don't beat yourself up about it thought, you know there is no way to predict how these kids will go. I hope the new treatment works and she doesn't end up inpatient. But if she does . . . . I HOPE THEY HAVE WI FI in the hospital!

What wonderful family you have! Sounds like Auntie and Uncle spoil both of you!!!

 

[All7OfUs]

Ah nuts! IP doesn't sound fun at all! But like you say, it isn't the worst thing in the world, either. Steph has it right!!!!!! Hope they have Wi Fi!!

 

[pipersmom]

First of all I'm sorry to hear about Piper but she will definitely be in my prayers!!!! Please keep us updated on her status!!

YAY for special treats and goodies!!!!!!

Thank you, Jen!

Sending special thoughts and prayers to you and sweet Piper. I'll be thinking of you and hoping that the neb and IV's do the trick.

Glad you got some goodies today.

Thank you, Lea ..we're def hoping for the improvement, but 7 days isn't a very long time to get it in. The goodies def helped keep me upbeat for a while, and helped me get back upbeat after I got home and had my breakdown, lol.

sorry to hear about piper. will continue to pray for the 2 of you.

moxie == i just googled it...i love soda so I'm sure I'll be trying it soon. There's a specialty soda store down the street. i'll have to go check it out.

Thank you, Jordan I love Moxie, I have heard haters describe it as tasting like cough syrup though. I would compare it to a mix of root beer and Dr Pepper.. definitely an acquired taste!

So sorry to hear about Piper's latest test results. Don't beat yourself up about it thought, you know there is no way to predict how these kids will go. I hope the new treatment works and she doesn't end up inpatient. But if she does . . . . I HOPE THEY HAVE WI FI in the hospital!

What wonderful family you have! Sounds like Auntie and Uncle spoil both of you!!!

Thank you, Stefani! They do have wi-fi, but I don't have a laptop, lol. They do have a family computer, but it's only open until 8pm (seems like they'd want it open after the kids are asleep, kwim?) so I'd be able to update some, just not as much as if we were in Roanoke. Auntie and Uncle do spoil us, as well as the rest of the family. We all met at my Mom's, and everyone got goodies..although I'm the only one who likes Moxie in my family..lol.

 

[pipersmom]

Ah nuts! IP doesn't sound fun at all! But like you say, it isn't the worst thing in the world, either. Steph has it right!!!!!! Hope they have Wi Fi!!

I am so going to be jonesing for my disboards if we end up there, lol. However I will take some piccies, and I'm sure Piper will be telling anyone who will listen all about her trip, the people who care about her on the boards (I've finally let her read some of the pre-trip and she couldn't believe how many people liked her gingerbread houses and think she's cute, lol), and the big give. (She was over the moon excited when I told her about it..the first thing out of her mouth was "Oohh Mommy..I loooove them!") LOL. She'll also be happy to see her friends (the nurses, rt's, teacher, art and music therapists) and her favorite Dr..Nico, the German Fellow that works with the CF Docs. A couple of clinics ago when we went, she insisted on wearing a dress. When Lauren, our NP told Piper how pretty she looked, Piper threw out.."Oh..I wore this for Nico..do you think he'll like it?" And you think you have problems with your son, Liesa!

 

[Momofwishkid]

Im so sorry Piper's appointment didnt go well. I was hoping she would be better. Hope the neb works but hey it dosent sound like Piper will be to upset to be IP with Dr Nico To cute! She'll be in my thoughts.

 

[pipersmom]

Im so sorry Piper's appointment didnt go well. I was hoping she would be better. Hope the neb works but hey it dosent sound like Piper will be to upset to be IP with Dr Nico To cute! She'll be in my thoughts.

We're still at the point now that it upsets me a lot more than it upsets her to go to Club Med. That's a good thing though, I hope it will continue for as long as possible! I was hoping it would be better as well, but with her O2 where it's been, I had a pretty good idea the numbers would be bad, just not as bad as they were. Thank you for the positive thoughts!

 

[yinyanggirls]

I'm so sorry about the sats. How funny that she dresses up for the doc. I guess you both have a sweet tooth.

 

[MAGICFOR2]

So sorry Piper's lung function is down. Prayers and for you both!

 

[Millie12591]

I am so going to be jonesing for my disboards if we end up there, lol. However I will take some piccies, and I'm sure Piper will be telling anyone who will listen all about her trip, the people who care about her on the boards (I've finally let her read some of the pre-trip and she couldn't believe how many people liked her gingerbread houses and think she's cute, lol), and the big give. (She was over the moon excited when I told her about it..the first thing out of her mouth was "Oohh Mommy..I loooove them!") LOL. She'll also be happy to see her friends (the nurses, rt's, teacher, art and music therapists) and her favorite Dr..Nico, the German Fellow that works with the CF Docs. A couple of clinics ago when we went, she insisted on wearing a dress. When Lauren, our NP told Piper how pretty she looked, Piper threw out.."Oh..I wore this for Nico..do you think he'll like it?" And you think you have problems with your son, Liesa!

Wish these stupid bugs would go away!! Darn those bugs! Tell Piper Mackenzie and I are pulling for her getting well.

We're still at the point now that it upsets me a lot more than it upsets her to go to Club Med. That's a good thing though, I hope it will continue for as long as possible! I was hoping it would be better as well, but with her O2 where it's been, I had a pretty good idea the numbers would be bad, just not as bad as they were. Thank you for the positive thoughts!

Here's to hoping they work it out and then when her trip comes around she will be on top of everything so she won't have to be on O2 or antibiotics. She's too cute about Dr. Nico, I love that she's already learning to dress to impress. To precious!
Try not to worry Amanda, I know that's easier said than done, she's in good hands, by someone who loves her more than you do. I know that sounds impossible, trust me it's something I can't even wrap my mind around, but true none the less. You've got your Family and your Dis Family to get you through, I'd say your one blessed mama.

 

[dawnbu40]

I'm so sorry to hear Piper isn't doing better!

How cute that she dressed up for her doctor!

And for an aunt and uncle bringing special treats!

and prayers for you both!

 

[pipersmom]

I'm so sorry about the sats. How funny that she dresses up for the doc. I guess you both have a sweet tooth.

Thanks hon, and thank you for the ear (eyes) last night.

So sorry Piper's lung function is down. Prayers and for you both!

Thank you, Tammie!

Wish these stupid bugs would go away!! Darn those bugs! Tell Piper Mackenzie and I are pulling for her getting well.

Here's to hoping they work it out and then when her trip comes around she will be on top of everything so she won't have to be on O2 or antibiotics. She's too cute about Dr. Nico, I love that she's already learning to dress to impress. To precious!
Try not to worry Amanda, I know that's easier said than done, she's in good hands, by someone who loves her more than you do. I know that sounds impossible, trust me it's something I can't even wrap my mind around, but true none the less. You've got your Family and your Dis Family to get you through, I'd say your one blessed mama.

Thanks, Camille..Piper will love that Mackenzie is pulling for her! We talked about it yesterday and will do another round of IVs in mid-Feb to try to get her really healthy for the trip. We are definitely blessed, and I do realize that, for the most part I do really well with avoiding the reality of her disease, it's just harder to do when her health takes a downturn.

 

[MagicMomentsMom]

Oh no, I am so sorry about Piper's test results--I'm saying a prayer for her and you both! It's harder on Mommma during the club med visits than the kiddo's--it's second nature to our kids--they have lived it since birth--all the club med visits, the meds, the docs. GenevaClaire has more "friends" at the childrens hospital than she does here in our own neighborhood and talks about her docs and nurses all the time. But it doesn't make it any easier on you..hugs, hugs and more hugs!

Yummy goodies but I'm not so sure about that soda, sounds kinda of funky, lol. Now the donuts, mmmmm...makes my tummy rumble


Veronica and GenevaClaire

 

[pipersmom]

I'm so sorry to hear Piper isn't doing better!

How cute that she dressed up for her doctor!

And for an aunt and uncle bringing special treats!

and prayers for you both!

Thank you, Dawn! Piper definitely comes up with some doozies. At another visit after that one, Dr Froh sent two interns in...they may have been 21-22..at any rate, they walk in and Piper says "Now why are you two cute boys coming to see me?" One of them took it in stride, but the other turned the color of a lobster..it was hilarious. As my Aunt would say, she doesn't hold back!

Oh no, I am so sorry about Piper's test results--I'm saying a prayer for her and you both! It's harder on Mommma during the club med visits than the kiddo's--it's second nature to our kids--they have lived it since birth--all the club med visits, the meds, the docs. GenevaClaire has more "friends" at the childrens hospital than she does here in our own neighborhood and talks about her docs and nurses all the time. But it doesn't make it any easier on you..hugs, hugs and more hugs!

Yummy goodies but I'm not so sure about that soda, sounds kinda of funky, lol. Now the donuts, mmmmm...makes my tummy rumble


Veronica and GenevaClaire

Thank you, Veronica! Piper does love Club Med..they spoil her rotten! I had a Moxie last night..yummy! And a donut with my coffee this morning..I needed the sugar rush..stayed up way too late to be getting up early and starting IVs!! The Princess is still asleep, by the time she got to bed last night it was 10:30..(we got home around 8 and still had to do meds). Trying to figure out how I'm going to coerce her into a nap later..

 

[yinyanggirls]

..stayed up way too late to be getting up early and starting IVs!! The Princess is still asleep, by the time she got to bed last night it was 10:30..(we got home around 8 and still had to do meds). Trying to figure out how I'm going to coerce her into a nap later..

I hear you on that one. I always get my hopes up that after my 4 hrs before getting Phoebe ready for the bus, I'll be able to go back to sleep, but usually Tessa has other ideas. We're up bright (um, dark) and early today.

 

[pacrosby]

Thank you, Dawn! Piper definitely comes up with some doozies. At another visit after that one, Dr Froh sent two interns in...they may have been 21-22..at any rate, they walk in and Piper says "Now why are you two cute boys coming to see me?" One of them took it in stride, but the other turned the color of a lobster..it was hilarious. As my Aunt would say, she doesn't hold back!

oooooh that Piper's got some spunk huh? Good for her!! And re: this Moxie??? I'm a native New Englander and have never heard of the stuff. Precisely what part of NE is it supposed to be common to???

Pamela

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607

Matty's Wish Trip TR "Mom, Dad, 3 Kids and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

 

[pipersmom]

I hear you on that one. I always get my hopes up that after my 4 hrs before getting Phoebe ready for the bus, I'll be able to go back to sleep, but usually Tessa has other ideas. We're up bright (um, dark) and early today.

You are up early! I think I'm good for a nap later, Piper finally got up at 9, but she's still yawning

oooooh that Piper's got some spunk huh? Good for her!! And re: this Moxie??? I'm a native New Englander and have never heard of the stuff. Precisely what part of NE is it supposed to be common to???

Pamela

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607

Matty's Wish Trip TR "Mom, Dad, 3 Kids and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

Our whole family is originally from Maine, Pamela..We've always been able to find it there, and I had kind of assumed it could be found at least somewhat further South? It's bottled in NH. I can't believe you've never heard of it!

 

[DisMomAmy]

Sorry to hear about Piper.

I know Moxie! I am in the hate camp though... I haven't seen it around in a long time, but I remember my dad used to drink it when I was a kid - I haven't had it in a long time but I definitely don't like it.

 

[eliz991]

Only in Texas could you get away with that. There may be disputes, but football is the common language spoken here, and if your team isn't winning then you cheer on the Texas team who is....but only for that game.

Right on! Which is why I will be rooting for the longhorns tonight!

And as for moving to Austin...sounds good to me! I do work for the state after all!

Okay, so bad news first so I can get it over with and think about more pleasant things! We had the appt with Piper's CF Doc today and her lung function was down to 33% again. ....


A case of Moxie soda and 5 dozen Mrs. Dunster's donuts!! I am in heaven and am about ready to break into a can of Moxie as we speak.

Sorry about Piper's stats I know you must be worried, even though she is used to it, it doesn't make it easy on momma.

Yay for the treats; never heard of Moxie but a donut sounds good! Dang New Year's diet....

Thank you, Dawn! Piper definitely comes up with some doozies. At another visit after that one, Dr Froh sent two interns in...they may have been 21-22..at any rate, they walk in and Piper says "Now why are you two cute boys coming to see me?" One of them took it in stride, but the other turned the color of a lobster..it was hilarious. As my Aunt would say, she doesn't hold back!

Go Piper!

 

[kayrosek]

So sorry to hear that Piper's not doing so well. You will both definatley be in my prayers. How cute that she dressed up for the doc. Glad you got spoiled sounds like you needed it.

 

[pipersmom]

Sorry to hear about Piper.

I know Moxie! I am in the hate camp though... I haven't seen it around in a long time, but I remember my dad used to drink it when I was a kid - I haven't had it in a long time but I definitely don't like it.

Thanks, Amy. I'm glad someone else has heard of it! My grandmother is the one who got me started on it. Incredibly enough, Piper also likes it.

Sorry about Piper's stats I know you must be worried, even though she is used to it, it doesn't make it easy on momma.

Yay for the treats; never heard of Moxie but a donut sounds good! Dang New Year's diet....
Go Piper!

Thank you, Elizabeth I'm trying to lose some weight as well, and as much as I love the donuts and moxie..it doesn't help..

So sorry to hear that Piper's not doing so well. You will both definatley be in my prayers. How cute that she dressed up for the doc. Glad you got spoiled sounds like you needed it.

Thank you, Kay