I'm Not Riding THAT! A Trip With Character! Piper's Wish Trip 3/2-8 - Upd-4/20

Good morning all! Just a quickie while Piper is doing treatments. We're doing well..I've either picked up a head cold or have allergy stuff going on, been taking loratidine for a few days, and that seems to be helping. Piper is doing well, her pft's were up to 44% on Thursday, so we're heading in the right direction, albeit slowly. Yesterday I was able to attend the CF Family Education day that our clinic puts on, touched base with some old friends, and met some new ones. I was able to go to workshops on lung transplantation and behavior issues in kids with chronic illnesses. They also had an update on what's going on research-wise..it was a good day, and nice to escape knowing I didn't have to worry about her meds and such.

She's still enjoying getting the e-cards..Amy..she did get yours, and several others that were sent the day before we got here, so no worries on that end. I'm going to gear up for Easter this week, get her basket shopping done and such. We've had a couple "there might be a spot at Kluge" opportunities, but so far no dice. If she doesn't get in sometime early this week, we won't bother..no sense packing everything twice in a week. Thank you all for the continued prayers and positive thoughts.
 

We are happy to hear from you too, Amanda! You guys are in our thoughts and prayers!

Glad to hear things are improving. Hope you guys get to get out soon!!
 
Glad to hear things are going in the right direction!!!!

Thanks for the update....

I hope you feel better too Amanda. :goodvibes
 
Feel Better, Amanda! Glad to hear that Piper is slowly getting better!
 
Good morning, all! I am feeling much better than I was and Piper continues to improve slowly. Her lung function yesterday was up to 46%, so we're getting there. It looks like we're going to be moving to Kluge tomorrow! We're waiting on the "final word" but we heard it from the discharge coordinator this time, so it's a pretty sure thing. In other news.. :lmao: I got an air mattress yesterday and slept much better last night, although it took me a bit to adjust to actually being able to roll over and stretch out! I was also able to do some Easter shopping for Piper and Gram. If we do get moved to Kluge, they'll forward any e-cards and mail over there, hooray! I'll post once I know for sure. :goodvibes: Thank you all for the continued prayers and positive thoughts! :grouphug:
 
Piper's moving! Yay!:banana: I'm glad she'll be more comfortable until she goes home. Air mattress - wow! Must feel like luxury compared to the chair! I am continuing to pray!:hug:
 
Congrats on the air mattress Amanda! That must be so much better than that chair! It sounds like you will definitely get to move - I hope that stays the case! I bet Piper is excited for Easter!
 
Yay for the potential move and everyone improving!

Yikes for mail...watch for the package...maybe (fingers crossed) it will arrive tomorrow before you all leave!

Lynn
 
Hi Amanda and Piper.. I have miss you both. Sorry you weren't feeling well either Amanda :( So glad to here Piper is improving and yeah on the air mattress.. Do they not have any rooms with some kind of bed or couch for you? :( I HATE those chairs :(
I'd love to send Piper cards to.. Let me know where to send them :-)
:hug::hug::hug:
 












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