Thank you for coming over! And no worries, I've made myself misty eyed too, lol. Piper and I are both very excited about her trip, although our hair stylist almost gave it away today !
I've spoken with most people about the surprise aspect, so when Piper was talking to her, I didn't think too much about it until I heard Becky say "2011..that's an awfully long time, I thought they always got done quicker than that!" I was all.."no, no..they needed the extra time to plan" LOL. Becky's daughter has had a wish granted, so she knew the usual time frame, I'll have to call her next week and explain..lol.I do love your interview. Did you happen to get it on video? I should do something like that with Matty.
Pamela
Matty's Wish Trip http://www.disboards.com/showthread.php?t=2325607
It's okay though, because things could always be a lot worse! She started homebound tonight, her teacher is actually the guidance counselor from her school, who Piper loves! She was very excited, and I was as well, now we'll just have regular "homework" type work to do in between as they'll meet M, T, and F for 2 hrs at a time. 
I can stop being the medicine and schoolwork nag, and go back to being just the medicine nag..
Hi Pamela! We don't have a video camera, so I couldn't record it. Once we get to GKTW I'm going to borrow one from them if there's one available so we can get some footage there. We had fun with the interview, though I felt a bit like a court reporter all typing while she answered questions...
Update: After checking Piper's O2 yesterday am, we had to put her back on..her sat was running 94, which is okay, but her pulse was going 125 trying to keep it there. It's been the same today, which makes me think the other day was probably just a fluke.
well im sorry she had to go back on the o2, but I it will get all worked out I just know it will soon. I actually think Alyssa may have needed oxygen earlier today if we had some. I am seriously going to talk to them this week, about closer monitoring. Her heart just seems to get excited more than it used to but I can only tell by counting her beats and thats hard and then she is getting scared so it just get worse.
Thank God for homebound though!!!!!!!!! I dont know what i would do with out Alyssas teacher, she is my lifeline I swear!! I dont even think she realizes how important she is too us. Sometimes it is so nice just to know that Alyssa is in the room with her and I can hear her laugh and learn. She makes it fun and it breaks up our day. For the hour she is here I am rolling girl! I get more done in that hour than I do all day! It great in so many ways! Im glad you are all set with that!
You should ask them about a pulse ox with Alyssa's lung functions being what they are. We got ours when Piper was a baby, and we were still using Cincinnati Childrens..they were all about parents being informed and being able to monitor their kids effectively. I'll be honest and tell you, until this last admission I don't think her current Dr would have ordered one just because I said I wanted it. She didn't even seem to want her to have O2 at home. I'm not sure if it's a control issue or something else. I haven't been completely happy with her clinic for the past yr or so, a lot of mixed messages and unreturned phone calls. It's just odd because we've always gotten such good care there. 
They might just be getting tired of me, lol.Im sorry Piper is back on O2. It sounds like homebound school is a wonderful thing. Im looking forward to Gavin starting sometime in the next month or so. So far he hasnt done any school at all this year and I cant wait to get it all worked out. Glad Piper got a teacher she likes.
How wonderful that Piper and her teacher could connect and have such a beautiful bond! I love to hear when teachers really go the extra mile!!
Hello there...I just found and caught up with your PTR! I am very excited about your upcoming trip and can't wait to follow along. Your daughter is beautiful and you seem like an incredibly strong and loving mother.
I have laughed and teared up so far reading.
I don't have any experience with CF but can relate on a smaller scale as my oldest child has asthma and my youngest has RAD. So nebulizers and peak flow readings and hospital visits are a part of our life as well. Our upcoming visits to WDW are during the best breathing months for my kids and are complete with steriods and antibiotics and epi pens on top of their regular meds. Still nothing compared to your daughters illness... but I have felt great fear at times and lots of blame.
Anyway, mom to mom, my prayers are with you each day.
! Thank you for the compliments Asthma parents probably have the best understanding outside of CF families as to what we go through. To me, in some ways, asthma is scarier, simply because the attacks can seemingly come out of nowhere. I usually have a good idea of when Piper is going into an exacerbation and we can be proactive. Prayers are always appreciated, especially this time of year! I'm excited you guys are leaving so soon..I'm going to have to go check out your PTR if you have one going. ! Hooray! Welcome aboard punkin! 
:
Maybe they are bank robbers or something and just haven't told me.
I will look for unmarked bills. 
I'll be Twittering mostly but may do a food report. We are traveling with family that is afraid of any info being put on the internet.
If you find some of those unmarked bills..send some our way...
I look at it as "you do what you have to do" kind of thing, I can't imagine doing anything differently. I occasionally hear about parents who don't stick to their children's treatment regimens, and it kills me. How could you not do something that will ultimately prolong your child's life? I'd love to see that picture! I have one of Piper at about that age when she fell asleep in a plate of spaghetti! Seriously though, I couldn't do what I do if Piper didn't have the personality that she does..I would go crazy. She keeps me on my toes enough that I don't have too much time for what-ifs and whens.
