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pipersmom
10-14-2009, 06:43 AM
Welcome to our journey! I’ve never written a PTR, and a month ago couldn’t have told you what a PTR is, so you may have to bear with me at times, but here goes.

The Cast:

Piper: my sweet, lovely, giving, caring 8 yo dd who I’d occasionally like to chuck out the closest window. :rotfl: Piper is the reason for this trip, but more about that in a few. I've chosen a sweet picture, and one I love for the irony...
http://i577.photobucket.com/albums/ss211/piperspics/2008-07PiperPics036.jpg
http://i577.photobucket.com/albums/ss211/piperspics/2008-07PiperPics057.jpg


Gram: my mother, who would do absolutely anything for us (and has), that I admittedly sometimes also want to chuck out the closest window..probably more often than Piper.

Myself: 37 yo divorced nurse, cook, maid, personal entertain….err..ok, that list could go on forever, so let’s just say..Mom. Now..Piper isn’t quite old or strong enough to chuck me out a window yet, but between she and Gram, I’m sure the thought has been there.



The Backstory:
Since we’re still early in the MAW process, I figured I’d use the next few entries to give you all some background, and explain why this trip means so much to us.

Like a lot of women, I always wanted to have children. When the ex and I married I was 27, and we immediately stopped using any form of birth control. When two years rolled by with no bundle of joy, we were sent to a Reproductive Endocrinologist to try to get the show on the road. We were lucky that I had excellent insurance at the time, that would pay for every aspect of AI (artificial insem) except the drugs, up to a limit. After two unsuccessful attempts, we had just enough left for one more try. After that appointment, the Dr told us that the chances of me conceiving from it were less than 1%. When the testing window opened, and I took a home pregnancy test, I was floored. I had completely braced myself to give up any hope of ever getting pregnant. When I went to the Dr’s office, they were almost as shocked as I was..lol.

So the standard nine months goes by and Piper met the world. At birth, she was taken to be put on oxygen, she was only on it for a few hours, and we were told it was pretty normal. She was 9 lbs, 2 oz..21 in long, full head of hair..perfect little girl. After about six weeks of struggling with breast feeding, and Piper not gaining weight, her Pediatrician (who had been highly recommended to me) says: “Well obviously something in your body is just screwed up since you’re breastfeeding and she isn’t gaining weight. You just have to stop breastfeeding and switch completely to formula.” Now, news like this is not something easy to hear to begin with, without being told that it’s your fault. That cured me of that Pediatrician, and we switched offices. To add the cherry on top, when I didn’t make a return appt with him, he called Social Services and had them knocking on my door!

When Piper was three months, she started showing some respiratory symptoms..runny nose, cough, the usual. I took her to the new Ped, he told us she had pneumonia, and put her on the necessary drugs. When there was no improvement after a week, I took her to a follow-up, only to be told I shouldn’t expect to see immediate improvement, and that it could take 3 weeks to a month. So, another week goes by..still no improvement..we go back, and the Dr pretty much lectures me that he already told me that there wouldn’t be immediate improvement, the drugs are working, etc. So after another 4 days (by this point I was convinced she was getting worse), I call, and her Dr isn’t available but we can see a Nurse Practitioner. The NP walked into the room, saw Piper, and immediately went to get a pulse oximeter (measures oxygen in the blood). Piper’s sats were down to 85%. A “normal” number is 100%. Anything below 93 or so is not a good thing, particularly for a baby. I thank God for that NP..she immediately sent us to the Children’s Hospital in Cincinnati. Piper had a partially collapsed left lung. Needless to say, she was admitted, which started another journey altogether.


To be continued....

pipersmom
10-14-2009, 08:16 AM
Piper had been in the hospital for about a week and a half on IV’s (the line was in her scalp..at the time, I thought it was the most horrible thing I had ever seen, even though they said it was actually less painful there than it would be somewhere else) she still was not improving the way they thought she should be. After a few days of various tests, they brought up doing a test for Cystic Fibrosis. Ironically enough, as a teenager I had worked at a camp for children with special needs, several of whom had CF. As an adult for almost ten years I worked managing group homes for adults with MR/DD. Special needs were something I was more than familiar with. When the tests came back positive for CF I was both relieved (we finally knew what was going on) and heartbroken. No mother wants the thought in the back of her head that there’s a good chance she’s going to outlive her child. I gave myself 24 hrs or so to be upset, and started doing research. We spent the next two and a half months in the hospital, getting discharged just before Christmas.

We were relatively lucky for the next 5 yrs. Piper had another admission when she was just over a year old. We became accustomed to doing her meds and treatments, she was staying healthy. When Piper was 3, I divorced and moved back home (Virginia). We lived with Gram for about 2 yrs before getting into a place of our own. Piper started kindergarten without a hitch, and the school year went well even though she had started culturing MRSA in her lungs. Things started going downhill when Piper was in first grade. She was hospitalized twice for IV antibiotics. I became an expert at dealing with a PICC line and keeping up with IV schedules. Last year she ended up missing about four months of school between hospitalizations and being on home IVs. When she was admitted last October, we finally had a port placed, which was something I had been pushing for. She already missed the first four weeks of school this year, but at this point I’m no longer surprised when she has to go on IVs, it’s become our new “normal”. Right now her lung function is about 55%. We spend at least 3 hrs a day doing nebs and her chest vest to try to keep her as healthy as possible. Although I have always been super open with Piper about her CF it has gotten harder over the past year or so. She’s started asking more questions about things like her own mortality, whether she’ll be able to have a family, etc. When she has to do homebound schooling and such, I’m very grateful that she’s such an intelligent girl…when she starts asking those types of questions, well, not so much. ;) There’s an essay someone gave to me shortly after Piper was diagnosed, which I think describes the journey of a special needs family perfectly…

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Make A Wish

We were told about MAW, and that Piper would qualify, a long time ago. My goal had been to wait until she was 10 or so to actually let her go through the process, thinking she would be old enough then to make a good decision. With everything she’s gone through over the past couple of years, I changed my mind. I contacted MAW a few weeks ago and am waiting right now for the ppwk to go through. We’ve talked about wish trips in the past, and there’s no doubt in my mind that Piper is going to ask to go to WDW. I found the Dis boards about a month ago and started lurking around, reading PTRs, and trip reports, and found the Wish Trippers Unite thread. I’ve learned so much already, and know that when the time for her trip rolls around, we’ll be as ready as it’s possible to be. I stay at home with Piper so that when she’s in hosp, I can be there. While it gives us an extremely limited income, I find the trade-off to be worth it, it just means that things like trips to WDW will only happen with help (like MAW), and makes me want to take full advantage of forums like this so she can literally have the trip of a lifetime. As we get closer, and have more details, I may just drive everyone crazy with questions, but I figure that’s okay. Ohh..and the fun part..Piper knows that I’ve started the process for a Wish trip..so we can go in two years *grins*. My actual hope is to be able to go in March, and I’m planning on surprising her with the dates at Christmas. Keep your fingers crossed that I can pull it off. :scared1:


Quick Links!
Introduction Pt 1 & 2 and CF 101- this page (1)
Home Again! (http://www.disboards.com/showpost.php?p=34149924&postcount=51)
The Wish Granters are Coming! (http://www.disboards.com/showpost.php?p=34180961&postcount=57)
Meeting the Wish Granters! (http://www.disboards.com/showpost.php?p=34238267&postcount=66)
An Interview with Piper! (http://www.disboards.com/showpost.php?p=34301667&postcount=92)
Vest Pics! (http://www.disboards.com/showpost.php?p=34346657&postcount=135)
Good News! (http://www.disboards.com/showpost.php?p=34375751&postcount=147)
Surprise Update! (http://www.disboards.com/showpost.php?p=34427148&postcount=158)
Paperwork is Signed! (http://www.disboards.com/showpost.php?p=34473887&postcount=168)
Mini Thanksgiving Update! (http://www.disboards.com/showpost.php?p=34511926&postcount=185)
New Haircut! (http://www.disboards.com/showpost.php?p=34555669&postcount=215)
Christmas Fun! (http://www.disboards.com/showpost.php?p=34569552&postcount=228)
Sometimes You Just Need a Man! (http://www.disboards.com/showpost.php?p=34605932&postcount=273)
We're Getting Dates!! (http://www.disboards.com/showpost.php?p=34639218&postcount=313)
Gingerbread House Comparisons! (http://www.disboards.com/showpost.php?p=34646068&postcount=336)
We Have Dates!!!!! (http://www.disboards.com/showpost.php?p=34676911&postcount=375)
ADRs! (http://www.disboards.com/showpost.php?p=34703057&postcount=436)
My Funny Girl! (http://www.disboards.com/showpost.php?p=34727567&postcount=510)
Progress & Random Kindness! (http://www.disboards.com/showpost.php?p=34737811&postcount=526)
Christmas Pics!! (http://www.disboards.com/showpost.php?p=34775441&postcount=574)
More Christmas Pics & Video!! (http://www.disboards.com/showpost.php?p=34786006&postcount=596)
A New Year!! Ramblings (http://www.disboards.com/showpost.php?p=34825048&postcount=631)
Exciting News!! (http://www.disboards.com/showpost.php?p=34869787&postcount=672)
Here's the Plan, Stan! (http://www.disboards.com/showpost.php?p=34882917&postcount=732)
Drs Appts & Fun! (http://www.disboards.com/showpost.php?p=34906715&postcount=777 Drs Appt & Fun!)
SeaWorld Fun! (http://www.disboards.com/showpost.php?p=34915970&postcount=802)
The Big Give Starts! (http://www.disboards.com/showpost.php?p=34973665&postcount=898)
Happy Piper!! Not So Happy Mommy! (http://www.disboards.com/showpost.php?p=34981696&postcount=929)

maroo
10-14-2009, 08:32 AM
Another Wish Pre-Trip Report!!!! :) Woo Hoo!!

popcorn::

2specialkids
10-14-2009, 09:29 AM
She is absolutely beautiful! princess:
You are doing a wonderful job with her (and I'm sure that there are times they do want to chuck you out the window-mine do to :lmao: ).
I can't wait to read more and I hope you get the dates you want. They were great about getting ours when I hoped for. We leave in 20 days ( :woohoo: :scared1: ) so I've got to get busy but I'll try to keep up with your planning too. popcorn::

kdzbear
10-14-2009, 12:10 PM
Great introduction and start to your report. The IV in her scalp brought back memories of my son when we was just born and that is where they placed his. I love the poem you posted. I would be glad to answer any questions that you might have if I can. Welcome! princess:

stacy347
10-15-2009, 06:17 AM
I can't wait to hear more about Piper's MAW trip, she's so precious :cutie: ~ sending good wishes that you hear back from them soon! :goodvibes

yinyanggirls
10-15-2009, 12:25 PM
Although I have always been super open with Piper about her CF it has gotten harder over the past year or so. She’s started asking more questions about things like her own mortality, whether she’ll be able to have a family, etc.

Wow, what a miracle Piper is! We were told we had virtually no chance to conceive either and because of our lack of insurance we found a different path to parenthood. Piper must have really wanted to get here. :goodvibes


Piper knows that I’ve started the process for a Wish trip..so we can go in two years *grins*. My actual hope is to be able to go in March, and I’m planning on surprising her with the dates at Christmas. Keep your fingers crossed that I can pull it off. :scared1:

What a fun surprise! I haven't told Tessa that we are going yet, but I have shown her some of the travel books and the Youtube videos. She always says she wants to go somewhere, usually CA to see Gramma at the beach. She's going to love this trip, maybe even more than Phoebe, which is why I'm trying to figure out how to explain to her that it really is for Phoebe. As a sister of a special needs child, she deserves some fun days too, but I want to make sure she understands why Phoebe is the star.

pipersmom
10-15-2009, 02:58 PM
Another Wish Pre-Trip Report!!!! :) Woo Hoo!!

popcorn::

Now Maroo...how did I know you'd be the first one here?? :rotfl: Seriously though, thank you..hopefully I won't bore everyone to death.

She is absolutely beautiful! princess:
You are doing a wonderful job with her (and I'm sure that there are times they do want to chuck you out the window-mine do to :lmao: ).
I can't wait to read more and I hope you get the dates you want. They were great about getting ours when I hoped for. We leave in 20 days ( :woohoo: :scared1: ) so I've got to get busy but I'll try to keep up with your planning too. popcorn::

I'm so excited that you all are leaving so soon! I've been trying to keep up with everyone's planning too, it's almost as good as going yourself :goodvibes

Great introduction and start to your report. The IV in her scalp brought back memories of my son when we was just born and that is where they placed his. I love the poem you posted. I would be glad to answer any questions that you might have if I can. Welcome! princess:

Thank you..and I'm sure I'll be taking you up on the answers offer. I went to WDW twice as a kid, but that was a looooong time ago.

I can't wait to hear more about Piper's MAW trip, she's so precious :cutie: ~ sending good wishes that you hear back from them soon! :goodvibes

Thanks Stacy..I'm not the most patient person, and it's driving me craaaaazy. :guilty:


Wow, what a miracle Piper is! We were told we had virtually no chance to conceive either and because of our lack of insurance we found a different path to parenthood. Piper must have really wanted to get here. :goodvibes




What a fun surprise! I haven't told Tessa that we are going yet, but I have shown her some of the travel books and the Youtube videos. She always says she wants to go somewhere, usually CA to see Gramma at the beach. She's going to love this trip, maybe even more than Phoebe, which is why I'm trying to figure out how to explain to her that it really is for Phoebe. As a sister of a special needs child, she deserves some fun days too, but I want to make sure she understands why Phoebe is the star.

I understand what you mean about Tessa, I'll try to think about it, but with Piper being a "lonely only" I haven't had to deal with that sort of thing. The easiest way may just be doing it straightforwardly, telling her about Phoebe's conditions without going into too much detail. I started telling Piper more when she was about 3..very laid back approach, how it was important to do her meds and why, etc. Tessa may surprise you :) I pm'ed you before I read your response here, so you have one in your box too :goodvibes

kdzbear
10-15-2009, 10:03 PM
I forgot to add earlier that I love Piper's name. It is what I wanted to name my oldest, but my husband vetoed the name! She is beautiful and her name fits her! princess:

pipersmom
10-15-2009, 11:03 PM
An Overview:
Cystic Fibrosis is the "most common" of rare diseases, with about 30,000 people in the US living with the disease. It's genetic, a gene must be passed from both parents. Even when both parents are carriers, there's only a 25% chance the child will have CF, a 50% chance the child will be a carrier, and a 25% chance the child will be unaffected. It causes unusually thick mucus due to a faulty salt/water exchange at the cellular level. The thick mucus can cause problems in the respiratory, digestive, and reproductive systems. Fifty years ago when a child was diagnosed with CF chances were good they wouldn't make it to their 21st birthday. Now, because of medical advances, the median age of survival is 38 years. Unfortunately, that number doesn't tell the whole story. There are "degrees" of CF, from mild to severe..some CFers may go their whole life with few hospitalizations, while others with a more severe form could be hospitalized or on IVs more often than they're not. Each lung infection leaves collateral damage, which builds up until finally a transplant is the only option. Digestive issues used to be just as complicated but have become somewhat better with the advent of pancreatic enzymes and better knowledge. There are still children who require g-tubes or tpn feeds, but we've been lucky in that Piper hasn't had weight gain issues since she was diagnosed and started on the needed meds.

A Day in the life..

Because of the amount of lung damage Piper has, and the amount of exacerbations (infections) she's had, we have a pretty rigorous schedule of treatments. On a typical school day we're up and at it by 5:30am to start her therapies. She uses a chest vest to vibrate her lungs for an hour, during which we're also doing 4-5 nebs and inhalers to help keep her airways clear. After the nebs and vest are done we spend an additional 10-15 minutes doing breathing exercises to encourage her to cough.

After her vest and nebs are done she does her am meds, she takes a special "super" vitamin, pancreatic enzymes, prilosec, ibuprofen, loratadine, bactrim, and azithromycin. One of her biggest thrills when she's in the hospital is when she has a new nurse come in to give her meds and sees Piper pop 5-6 pills in her mouth at a time without any problem. Usually we get the "mouth drop" effect just because most children really don't like taking pills. Piper is at the point now where she'd rather have pills than liquid..she's figured out pills usually don't have a taste and liquids can taste pretty nasty. :rolleyes:

Once she gets home from school and has a quick snack, we're back to repeating her morning therapies, getting homework done, having dinner and doing the respiratory therapies once more before bed. I can honestly say we both absolutely live for the weekend and sleeping in until 7 or so. When Piper is on home IVs are all bets are pretty much off. Between the IVs and respiratory treatments she's pretty much hooked up to something all day. The nice thing is that now most IV meds are available in med-balls, which don't require a pump and can even fit into some of her pockets. They're pressure-fed so they can go anywhere she goes!


Next time: An interview with Piper!

pipersmom
10-15-2009, 11:09 PM
I forgot to add earlier that I love Piper's name. It is what I wanted to name my oldest, but my husband vetoed the name! She is beautiful and her name fits her! princess:

Thank you :) We really wanted something different since we both have popular names and grew up having a lot of people in our classes with the same name. I also wanted something that really didn't lend itself to a nickname, lol..I'm sure it will happen somewhere down the road, but there aren't too many insulting things to rhyme with "Piper" (although we did go through the "diaper" thing with a boy in her kindergarten class)..sometimes you just can't win!

chrissid7
10-15-2009, 11:39 PM
OMG ok so while our stories started so differently they started to have a lot in common. 1st I must say Piper is beautiful and you are amazing and I know this because I just do!!!

I was going to post some of my story here for ya but I tell ya what im going to go ahead tonight and tomorrw and finish my ptr introduction! I will tell ya though our daughters have a lot in common it sounds like (schedule, meds, mine also only went the 1st week of school, pill poppers teehee, and brave and stronger than we can put into words).

Im so happy to read your ptr and I cant wait to hear more!! I can t wait also to learn more about piper! :hug:

pipersmom
10-16-2009, 06:14 AM
OMG ok so while our stories started so differently they started to have a lot in common. 1st I must say Piper is beautiful and you are amazing and I know this because I just do!!!

I was going to post some of my story here for ya but I tell ya what im going to go ahead tonight and tomorrw and finish my ptr introduction! I will tell ya though our daughters have a lot in common it sounds like (schedule, meds, mine also only went the 1st week of school, pill poppers teehee, and brave and stronger than we can put into words).

Im so happy to read your ptr and I cant wait to hear more!! I can t wait also to learn more about piper! :hug:

Thank you :lovestruc Woohoo..I've been keeping up with your ptr anyway, so I'll look forward to reading more :banana:

maroo
10-16-2009, 01:12 PM
Goodness!!!

I used to work at a camp for disabled children and we had a week for each different disability or disease, including CF.

Back then (this was years ago) they had to take a TON of enzymes with every meal, even a cracker. And they would put a bunch of those pills in their mouth. It was a major http://i460.photobucket.com/albums/qq324/mblaine/jawdrop.gif experience for me, too!

Lauren has a similar schedule - her stuff is stretching and just the extra time it takes to get junk done. But I can relate to what that looks like every day...so hugs to all of you!

I can not WAIT to see the interview with Piper!! :)

pipersmom
10-17-2009, 09:24 AM
Goodness!!!

I used to work at a camp for disabled children and we had a week for each different disability or disease, including CF.

Back then (this was years ago) they had to take a TON of enzymes with every meal, even a cracker. And they would put a bunch of those pills in their mouth. It was a major http://i460.photobucket.com/albums/qq324/mblaine/jawdrop.gif experience for me, too!

Lauren has a similar schedule - her stuff is stretching and just the extra time it takes to get junk done. But I can relate to what that looks like every day...so hugs to all of you!

I can not WAIT to see the interview with Piper!! :)

We just upped Piper's enzyme strength a few months ago so she's only taking 3 with each meal..before that she was taking 7 ! My favorite part is when she's drinking a bottle of water or gatorade and accidentally loses a pill in the bottle..lol..nothing like fishing out wet slimy capsules :rolleyes:

pipersmom
10-18-2009, 12:07 AM
Piper has been battling a cold most of this week, but her o2 sats had stayed pretty good. Since yesterday those numbers have started to drop, with them getting too low for comfort this evening. After speaking with her Dr, we're going to probably start her on oxygen and home IV's on Monday. A hospitalization right now is just too risky with H1N1 running so rampant. Please keep her in your thoughts/prayers..we were supposed to leave for a mini-vacation in DC Friday, and she's going to be very disappointed. Since we'll be doing everything at home, I'll try to update frequently..

stacy347
10-18-2009, 08:07 AM
Prayers said for Piper. :hug:

jordanyosh
10-18-2009, 12:10 PM
okay..i'm in....

kdzbear
10-18-2009, 12:21 PM
More prayers coming your way! :wizard:

maroo
10-18-2009, 12:40 PM
Praying!!

We r sure it is not H1N1, right? Praying for u guys!!

yinyanggirls
10-18-2009, 02:19 PM
Piper has been battling a cold most of this week, but her o2 sats had stayed pretty good. Since yesterday those numbers have started to drop, with them getting too low for comfort this evening. After speaking with her Dr, we're going to probably start her on oxygen and home IV's on Monday. A hospitalization right now is just too risky with H1N1 running so rampant. Please keep her in your thoughts/prayers..we were supposed to leave for a mini-vacation in DC Friday, and she's going to be very disappointed. Since we'll be doing everything at home, I'll try to update frequently..

Man, that stinks. At least you can stay home. I hate living in the hospital. I hope she recovers quickly!

pipersmom
10-18-2009, 03:41 PM
Prayers said for Piper. :hug:

More prayers coming your way! :wizard:

Praying!!

We r sure it is not H1N1, right? Praying for u guys!!

Man, that stinks. At least you can stay home. I hate living in the hospital. I hope she recovers quickly!

Thanks for the prayers guys, every little bit counts! We're 99% sure it's not H1N1, she's had no vomiting, nausea, diarrhea, etc, and her temp hasn't gone over 100. We'd been hoping to avoid the home oxygen thing as long as possible, but knew it would be happening at some point. Good thing for now is that she won't need it all the time :) Staying busy today, Dr wanted us doing 5!! treatments during the daylight hrs, which basically comes down to finishing one and starting another within 2 hrs. Hopefully it will keep her from getting worse though.

pipersmom
10-18-2009, 03:45 PM
okay..i'm in....

Thanks Jordan :goodvibes Hopefully I can keep you somewhat as entertained as you kept me last night :angel: Seriously though guys, his ptr is very very entertaining..would definitely check it out if you have time.

2specialkids
10-18-2009, 04:31 PM
Prayers and hugs...atleast you can be at home. :hug: That should keep everyone a bit more comfortable.

chrissid7
10-18-2009, 10:53 PM
Oh My gosh! Most definitely in my prayers. I know we have touched on the similarities, but Alyssa is fighting off this cold too. It was not the dreaded H1N1 but colds are so scarey in our house too. I wish I could help with a treatment or 2. They really do eat up your days. Hang in the there and we are praying for a speedy recovery. Im glad they let you be home right away, our docs make us wait a couple of days so they can test her levels. Its a pain. :hug:

Talk to ya soon

jordanyosh
10-18-2009, 11:47 PM
Piper has been battling a cold most of this week, but her o2 sats had stayed pretty good. Since yesterday those numbers have started to drop, with them getting too low for comfort this evening. After speaking with her Dr, we're going to probably start her on oxygen and home IV's on Monday. A hospitalization right now is just too risky with H1N1 running so rampant. Please keep her in your thoughts/prayers..we were supposed to leave for a mini-vacation in DC Friday, and she's going to be very disappointed. Since we'll be doing everything at home, I'll try to update frequently..

Will be praying!

H1N1 is a doozie. I had it in August.....not good, especially to those with respiratory issues. I think I actually had pneumonia too, but couldn't take any more time off from work.....

pipersmom
10-19-2009, 08:12 AM
Prayers and hugs...atleast you can be at home. :hug: That should keep everyone a bit more comfortable.

Oh My gosh! Most definitely in my prayers. I know we have touched on the similarities, but Alyssa is fighting off this cold too. It was not the dreaded H1N1 but colds are so scarey in our house too. I wish I could help with a treatment or 2. They really do eat up your days. Hang in the there and we are praying for a speedy recovery. Im glad they let you be home right away, our docs make us wait a couple of days so they can test her levels. Its a pain. :hug:

Talk to ya soon

Will be praying!

H1N1 is a doozie. I had it in August.....not good, especially to those with respiratory issues. I think I actually had pneumonia too, but couldn't take any more time off from work.....

Thanks all for the prayers and positive thoughts, she was sat'ting last night at 90, which is much better than the 86 of Sat night. I'm probably going to end up keeping her home today and tomorrow on the 5 treatment schedule, and hopefully kick this thing in the butt. The good news is after updating her Dr yesterday, it looks like we're going to hold off on the IVs unless things take a downturn again. We're lucky in that her Drs know that I know what I'm doing and trust my instincts as far as when something more serious is going on as opposed to just a cold or bug she's picked up. Keeping my fingers crossed now that we may not have to cancel DC.

jordanyosh
10-19-2009, 01:20 PM
Good news! Well let's all hope she continues to get better!

pipersmom
10-19-2009, 09:23 PM
Good news! Well let's all hope she continues to get better!

Thanks Jordan :)

pipersmom
10-19-2009, 09:32 PM
Okay, unfortunately by limbo I do not mean the walk tall and carry a big stick you can duck underneath limbo.

So we get up this morning and get her treatment regime going..9am goes by...10am goes by, still no phone call from her Dr..11..12...I call and speak to Wendy (the secretary), explain I'm not trying to harass Lauren, but wondering what's going on. Wendy explains Lauren seems to be making some kind of arrangements and will call shortly. So Lauren calls about ten minutes later..I explain everything going on (again) and hear..."Well, Dr Froh wants to admit her". For those of you following my updates, Dr Froh was not on call this weekend so I was working with another Dr from the CF Center..they usually tend to agree on treatment options, but obviously this was not the case. So I go into the whole no vomiting mucus--lovely picture, eh?--no lack of appetite, ie none of the normal exacerbation symptoms that Piper shows normally. So Lauren says she'll get back in touch with Dr Froh..and give me a call back. Well, the call back has yet to happen, and won't until sometime tomorrow, apparently. In the meantime Piper's numbers have started to dip again, both awake and asleep.. :confused3 Frustrated would be an appropriate word right now. Please continue to keep her in your prayers and thoughts and I'll update when I know more..

jordanyosh
10-19-2009, 09:39 PM
okay. thanks for keeping us in the loop.

maroo
10-19-2009, 10:01 PM
Okay, unfortunately by limbo I do not mean the walk tall and carry a big stick you can duck underneath limbo.

So we get up this morning and get her treatment regime going..9am goes by...10am goes by, still no phone call from her Dr..11..12...I call and speak to Wendy (the secretary), explain I'm not trying to harass Lauren, but wondering what's going on. Wendy explains Lauren seems to be making some kind of arrangements and will call shortly. So Lauren calls about ten minutes later..I explain everything going on (again) and hear..."Well, Dr Froh wants to admit her". For those of you following my updates, Dr Froh was not on call this weekend so I was working with another Dr from the CF Center..they usually tend to agree on treatment options, but obviously this was not the case. So I go into the whole no vomiting mucus--lovely picture, eh?--no lack of appetite, ie none of the normal exacerbation symptoms that Piper shows normally. So Lauren says she'll get back in touch with Dr Froh..and give me a call back. Well, the call back has yet to happen, and won't until sometime tomorrow, apparently. In the meantime Piper's numbers have started to dip again, both awake and asleep.. :confused3 Frustrated would be an appropriate word right now. Please continue to keep her in your prayers and thoughts and I'll update when I know more..


Gosh. I am so sorry!

I hope you guys get an answer soon!

I am praying for you guys!! :hug:

2specialkids
10-19-2009, 10:37 PM
praying for health, answers and no hospital..:grouphug:
Keep us updated as you can.

chrissid7
10-20-2009, 10:10 AM
Oh my gosh girl I am feeling for ya. That is so frustrating when not everyone is on the same page. I hope she is feeling better today! I think I will be asking for a pulse ox reader. Our last doctor wouldnt prescribe 1 because he thought I would worry too much. I think our new doc would do it because its not worry its being informed. I think you are doing a great job being proactive for your daughter. I am calling around today trying to find the vaccine too.

Good luck with all of it I know your hands are full. :hug:

pipersmom
10-20-2009, 12:13 PM
Okay, so Piper is doing a treatment right now and then we'll be headed to Roanoke to get her admitted. I'll update as I can but I can't remember how the net access works up there and I have no laptop. Please keep her in your prayers and thoughts!

stacy347
10-20-2009, 12:52 PM
Aww...:hug: and prayers for both of you.

2specialkids
10-20-2009, 01:08 PM
Daggone it! I was really praying she'd get to stay home.:sad1: Take care and let us know how she's doing as you can. :hug: I'll keep praying.

yinyanggirls
10-20-2009, 11:50 PM
Oh bummer. I hope it helps her recover faster, if she has to be stuck in there anyway. Updates when you can.

chrissid7
10-21-2009, 12:38 AM
I know how crazy it is but please let us know how she is doing. Im so sorry she had to go in but hopefully it will turn her around quickly! Praying for you all tonight and I hope you are able to get some rest as well. :hug: I was wondering too and Ill send you a pm but I would like for Alyssa to maybe draw her a picture and send it to her. Alyssa loves person things especially when she is admitted and I would love for her to do it if its ok. You can pm me the info if its ok. Im going to pm you my email.

:cheer2: Get well quickly Piper :cheer2:

maroo
10-21-2009, 09:19 AM
Oh no! Admitted?!? That stinks!


I am praying for you guys. Hang in there!

pipersmom
10-21-2009, 03:26 PM
Thanks all for the prayers and good wishes, just posting a quick update since I had to be out and about picking up schoolwork and such. Piper is having an exacerbation, but we caught it earlier than normal, her x-rays are showing just a small spot of pneumonia. In the meantime her glucose levels were also high, so we're going to start a diabetic diet to hopefully hold off CF related diabetes as long as possible. Right now she's on 2 ltrs of O2, once we can get her weaned off that and her lung function up (she's at about 45%), we'll come home on the IVs. I've pm'ed our snail mail addy to maroo and chrissi, not sure how long we'll be at the hospital, so that will be the easiest way if anyone would like to send cards and such..someone from the family will be visiting weekends, and I'll need to make periodic trips home to feed the hermit crabs ...

jordanyosh
10-21-2009, 05:48 PM
Thanks all for the prayers and good wishes, just posting a quick update since I had to be out and about picking up schoolwork and such. Piper is having an exacerbation, but we caught it earlier than normal, her x-rays are showing just a small spot of pneumonia. In the meantime her glucose levels were also high, so we're going to start a diabetic diet to hopefully hold off CF related diabetes as long as possible. Right now she's on 2 ltrs of O2, once we can get her weaned off that and her lung function up (she's at about 45%), we'll come home on the IVs. I've pm'ed our snail mail addy to maroo and chrissi, not sure how long we'll be at the hospital, so that will be the easiest way if anyone would like to send cards and such..someone from the family will be visiting weekends, and I'll need to make periodic trips home to feed the hermit crabs ...

Thanks Amanda.

Will continue praying!:grouphug:

chrissid7
10-22-2009, 12:20 AM
Pipers mom also wanted to post, but ran out of time that PIPER WAS APPROVED FOR HER TRIP WOOOHOOO!

I hope that you get too meet with them soon and start the "other" balls rolling!!

Praying for Piper tonight, I hope that you are able to hold of the diabetes as long as possible (forever hopefully). We have had a couple of scares with that but thankfully nothing progressed.

Sending love to you and Piper!!

(BTW a friend of ours with CF was admitted to our local hospital tonight too, also stats dropping, but he says he feels fine. lowest he has been in 2 years)

stacy347
10-22-2009, 07:45 AM
Will continue praying for Piper.

I'm so happy for you guys about the trip ~ hopefully that will keep her spirits up while she is going through this! :grouphug:

maroo
10-22-2009, 09:47 AM
I am so glad you guys caught this one early.

Way to go!

I am continuing to pray for you guys. My prayer list has gotten so long that I have had to write it down. (Yeah, I know...I can usually remember every one of them.) But with the H1N1 kids, wish kids, etc, etc...gotten to be more than I can just remember. So - you are on THE LIST. :)

I have cleaned out my PM box so that I can receive PM's from you guys if you need her address! Feel free to let me know! :)

pipersmom
10-22-2009, 10:35 PM
Thanks Amanda.

Will continue praying!:grouphug:

Thanks you for the continued prayers Jordan :lovestruc

Pipers mom also wanted to post, but ran out of time that PIPER WAS APPROVED FOR HER TRIP WOOOHOOO!

I hope that you get too meet with them soon and start the "other" balls rolling!!

Praying for Piper tonight, I hope that you are able to hold of the diabetes as long as possible (forever hopefully). We have had a couple of scares with that but thankfully nothing progressed.

Sending love to you and Piper!!

(BTW a friend of ours with CF was admitted to our local hospital tonight too, also stats dropping, but he says he feels fine. lowest he has been in 2 years)

Thanks Chrissi, according to the RTs here, there are more bugs going around than they've seen for a long time. We're hoping the glucose levels were only elevated because she's sick, but won't know until she's well and we can get a baseline. Praying that Alyssa stays healthy!

Will continue praying for Piper.

I'm so happy for you guys about the trip ~ hopefully that will keep her spirits up while she is going through this! :grouphug:

Thank you, Stacy, Piper actually takes it all in stride, she loves all the attention..I usually have to bribe her with ice cream the day she's discharged!


I am so glad you guys caught this one early.

Way to go!

I am continuing to pray for you guys. My prayer list has gotten so long that I have had to write it down. (Yeah, I know...I can usually remember every one of them.) But with the H1N1 kids, wish kids, etc, etc...gotten to be more than I can just remember. So - you are on THE LIST. :)

I have cleaned out my PM box so that I can receive PM's from you guys if you need her address! Feel free to let me know! :)

Thank you, maroo, as I said up there ^^^ the RTs here have said this is the worst few months they've seen in a long time, even aside from h1n1. Hopefully once the colder weather sets in some of the bugs will die down.



Piper News (lol) We're pretty much just going through the routine here, her O2 is down to 1 ltr, which is definitely a good thing. She's been doing a lot of crafts and playing new video games (the child life dept here is awesome), and doing homework when I make her..much to her chagrin! Hopefully by the middle of next week we'll be ready to get out of here, for some reason she's spent an awful lot of Halloween seasons in the hospital. Again, thank you to everyone for the prayers and positive thoughts.

Uuaww
10-23-2009, 06:33 AM
read your trip report, good luck on everything from the islands!

2specialkids
10-23-2009, 09:37 PM
:grouphug: Hugs to Piper and you. It never ceases to amaze me how strong these little ones are. They just take it all in stride. I suppose it's the norm for them so they get to expect it but it can make a momma crazy. Prayers are still going up here.

maroo
10-24-2009, 02:52 PM
Hugs to you guys!

Still praying for you guys!

I am glad that she is comfortable and it sounds like they are taking great care of you guys - and keeping you entertained! :thumbsup2

chrissid7
10-26-2009, 01:40 AM
Just thinking about you! I hope you and Piper had a good weekend. Has been weaned down anymore? Fingers are crossed and saying a prayer for better PFT's this week. :hug: Hang in there girls!

pipersmom
10-30-2009, 10:18 PM
We were just released today :banana::banana: Piper is still on oxygen, but only a half liter. Her PFTs are still only around 46%, but we're hoping that will go up as she continues the IV's at home. Right now we're not sure what the prognosis is going to be on the O2, her chest x-rays have actually improved a lot, so the fact she's still requiring the O2 could mean that her blood flow has started to bypass the worst part of the damage in her lungs, and the O2 is going to be an indefinite thing. It's just a matter of waiting to see what happens. She did not want to leave (what else is new??), but the thought of trick-or-treating seemed to help that along. ;)

On the trip front, we got the names of her wish granters, and should be getting a phone call any day now to set up a meeting with them, hooray! The child life specialist at the hosp asked Piper if she had made a wish yet, and Piper's immediate response was "no, but I'm asking to go to disney in 2011!" She then immediately started telling Jill everything she wanted to do at the World. I'm thinking the surprise is definitely going to work considering she still hasn't caught on ..lol.

Thanks again all for all the thoughts and prayers, and I apologize for not updating sooner, someone :rolleyes1 was very impatient this time with Mommy leaving her for more than 10 minutes.

yinyanggirls
10-30-2009, 11:11 PM
I'm glad that TrickorTreating gave her some incentive. :) So happy you are finally home!

chrissid7
10-31-2009, 01:00 AM
YAY!!!!!! So glad yall are home!!! I got her letter back in the mail today, it was my fault, I wrote the addy down for Alyssa to write it and I was rushing and well lesson learned. We will be resending it on Monday because Alyssa actually had something that she wanted to add so I need a bigger envelope.

What is she going to be for Halloween? Alyssa is an "elegant Witch". Just a cute lil witch. We are having a costume party so My husband and I are going as Dog the Bounty hunter and his wife beth lol. Have a great weekend! :cool1:

jordanyosh
10-31-2009, 01:01 AM
glad you're home!:thumbsup2

kdzbear
10-31-2009, 09:18 AM
Yeah! I am so glad that Piper is home! Have fun trick or treating! princess:

maroo
10-31-2009, 12:37 PM
Have fun trick-or-treating! :)

Keep us updated on Piper. Praying for you guys!

pipersmom
11-02-2009, 04:52 PM
Okay, boring things first..lol..health update...Piper's still doing O2 pretty much 24 hrs a day, the exception being during treatments. After speaking with her Dr about my concerns today, she will not be going back to school until spring. We'll do some combination of homeschool & homebound schooling. I am a bit apprehensive about this because with it being just the two of us, we sometimes drive each other crazy, but healthwise, I know it is the best choice for her right now.

Now for the fun stuff! I got a call from her wish granters today and we're meeting with them Thurs evening..woohoo :banana::banana: I know it's going to feel more real after that happens, for me anyway. One of them is actually from my small town, which really surprised me, but I think is so cool:) I will take some pictures when they're here, and will be sure to update :goodvibes

Halloween went really well..Piper dressed up as Hermione from Harry Potter..she was very cute! ( I don't have pics..bad mommy) We went to a Trunk or Treat event..it was drizzling and we knew that would be relatively quick. What I didn't think about was her costume. I heard several people commenting (seeing the back of her costume) that she was a witch. Now, I know Hermione is technically a witch, but I truly didn't think about it that way..was thinking more of the literary character thing, I guess. At any rate, Piper didn't notice, and no one approached us directly, so I guess it was okay. She got a ton of candy between that and our immediate neighbors, and not too much choccy (which she can't have, and I don't need, lol). So it was a great night, and she loved being able to trick or treat on Halloween!

Thanks all for the continued prayers and positive thoughts :grouphug:

Maryrn11168
11-02-2009, 07:28 PM
Hi....I am new to this thread, but not the boards. A little background info..I too am an RN. I have been a labor and Delivery nurse for close to 20 years!! I was shocked during my first pregnancy when I was told that I was a CF carrier. My OB assured me that since they started testing a year before not ONE of his patients spouses had also come back a carrier and not to worry...well 2 weeks later I got the call that my DH was also a carrier. Amnio showed no CF. Pregnancy #2 (wanted a 2nd!!) DD is a carrier...then came surprise baby number 3!!! Brian was born 17 months after DD, the sweetest most energetic little boy who happens to suffer from CF:love::love:. The first 18 months were rough in and out of the hospital until his port was placed. That lasted him for 5 years. It became infected labor day weekend....he was admitted and eventually they removed the port. 5 days after the site became infected, wound opened and new fun started!!! The wound infection was gone, and the wound almost completely healed when the coughing started...very agressive b/c now we have no port and his latest hosptial stay proved he has very bad veins (9 attemps for an IV and they still cpuld not get the line in!!!). Dr sends for an x-ray and he has pneumonia!!!! :scared1::scared1:Now we have a PICC line and he has missed another week of school!!! I think thats 4 weeks so far this year!!

Now to how I found this thread!! We have been to disney numerous times...we actually own in DVC! But I called MAW today b/c Brian wants to go on the new Disney Cruise Ship the Dream. So I started to surf the boards came across this thread and read the story of Piper and was truly touched!!! MAW was faxing the papers to his doctor today and I hope he will get approved. The last 8 weeks have been a nightmare, but he is a trooper and really keeps me upbeat!!! Sometimes I enjoy going to work,,,I have less medications to give and I may get a break!!! Well he has just informed me his medication is complete and he is ready for the next one!! So I woll be going, but will be back soon

pipersmom
11-02-2009, 08:28 PM
Hi....I am new to this thread, but not the boards. A little background info..I too am an RN. I have been a labor and Delivery nurse for close to 20 years!! I was shocked during my first pregnancy when I was told that I was a CF carrier. My OB assured me that since they started testing a year before not ONE of his patients spouses had also come back a carrier and not to worry...well 2 weeks later I got the call that my DH was also a carrier. Amnio showed no CF. Pregnancy #2 (wanted a 2nd!!) DD is a carrier...then came surprise baby number 3!!! Brian was born 17 months after DD, the sweetest most energetic little boy who happens to suffer from CF:love::love:. The first 18 months were rough in and out of the hospital until his port was placed. That lasted him for 5 years. It became infected labor day weekend....he was admitted and eventually they removed the port. 5 days after the site became infected, wound opened and new fun started!!! The wound infection was gone, and the wound almost completely healed when the coughing started...very agressive b/c now we have no port and his latest hosptial stay proved he has very bad veins (9 attemps for an IV and they still cpuld not get the line in!!!). Dr sends for an x-ray and he has pneumonia!!!! :scared1::scared1:Now we have a PICC line and he has missed another week of school!!! I think thats 4 weeks so far this year!!

Now to how I found this thread!! We have been to disney numerous times...we actually own in DVC! But I called MAW today b/c Brian wants to go on the new Disney Cruise Ship the Dream. So I started to surf the boards came across this thread and read the story of Piper and was truly touched!!! MAW was faxing the papers to his doctor today and I hope he will get approved. The last 8 weeks have been a nightmare, but he is a trooper and really keeps me upbeat!!! Sometimes I enjoy going to work,,,I have less medications to give and I may get a break!!! Well he has just informed me his medication is complete and he is ready for the next one!! So I woll be going, but will be back soon

Welcome Mary..and thanks for reading. I should explain, I'm not a nurse, that was more part of a chief cook and bottlewasher type of explanation..maybe I should have put a :rolleyes: behind that...so hard online sometimes to tell inflections on here. Anyway! I'm glad you found the thread, obviously you know exactly what we're going through right now. One of my biggest fears is Piper's port becoming infected, it's just such a nice change from PICCs and IV's. When she got her port, I had asked about getting her one and was told they prefer not to do it on kids her age. So the next day they try to place a PICC (8 attempts, I was in the room watching and NOT a happy camper by the end) and no luck. The same surgeon came to see me again, and I must say was a bit sheepish when admitting maybe Piper needed a port. :rolleyes:

I very much prefer Piper being home rather than at Club Med, it's a lot more work for me, but so much more relaxing in general. I do all her needle changes, etc myself. I know a lot of people use home care, but honestly, I prefer doing it to having strangers in and out of my house and being on their schedule instead of our own. I also think it makes it easier on Piper. Even when she's in hosp, I do her port accessing and changes, per her request. We've had a few nurses get bent out of shape about it, but I really don't care. Okay, enough blabbing from me, lol..will look forward to getting to know you and your 3 better. You may want to swing by the community board, there's a thread just for wish trippers!

Wish Trippers Unite! Volume Two (http://www.disboards.com/showthread.php?t=2039777)

maroo
11-02-2009, 10:27 PM
Okay, boring things first..lol..health update...Piper's still doing O2 pretty much 24 hrs a day, the exception being during treatments. After speaking with her Dr about my concerns today, she will not be going back to school until spring. We'll do some combination of homeschool & homebound schooling. I am a bit apprehensive about this because with it being just the two of us, we sometimes drive each other crazy, but healthwise, I know it is the best choice for her right now.

Now for the fun stuff! I got a call from her wish granters today and we're meeting with them Thurs evening..woohoo :banana::banana: I know it's going to feel more real after that happens, for me anyway. One of them is actually from my small town, which really surprised me, but I think is so cool:) I will take some pictures when they're here, and will be sure to update :goodvibes

Halloween went really well..Piper dressed up as Hermione from Harry Potter..she was very cute! ( I don't have pics..bad mommy) We went to a Trunk or Treat event..it was drizzling and we knew that would be relatively quick. What I didn't think about was her costume. I heard several people commenting (seeing the back of her costume) that she was a witch. Now, I know Hermione is technically a witch, but I truly didn't think about it that way..was thinking more of the literary character thing, I guess. At any rate, Piper didn't notice, and no one approached us directly, so I guess it was okay. She got a ton of candy between that and our immediate neighbors, and not too much choccy (which she can't have, and I don't need, lol). So it was a great night, and she loved being able to trick or treat on Halloween!

Thanks all for the continued prayers and positive thoughts :grouphug:

First - the health update - Bless your heart. Still on O2 all day. That is a bummer. I think you made a GREAT decision to keep her home for the winter. Hopefully you guys can find some safe ways to keep her safe and well but also able to hang out with some other folks - as I totally understand getting on each others nerves after a while.

Woo Hoo on the wish granters coming!!!

Hermione! How cool is THAT! You guys have totally got to see the World of Harry Potter at Universal. It isn't open yet...but hopefully it will be by the time you guys get her wish granted!

Still praying for you guys.


Hi....I am new to this thread, but not the boards. A little background info..I too am an RN. I have been a labor and Delivery nurse for close to 20 years!! I was shocked during my first pregnancy when I was told that I was a CF carrier. My OB assured me that since they started testing a year before not ONE of his patients spouses had also come back a carrier and not to worry...well 2 weeks later I got the call that my DH was also a carrier. Amnio showed no CF. Pregnancy #2 (wanted a 2nd!!) DD is a carrier...then came surprise baby number 3!!! Brian was born 17 months after DD, the sweetest most energetic little boy who happens to suffer from CF:love::love:. The first 18 months were rough in and out of the hospital until his port was placed. That lasted him for 5 years. It became infected labor day weekend....he was admitted and eventually they removed the port. 5 days after the site became infected, wound opened and new fun started!!! The wound infection was gone, and the wound almost completely healed when the coughing started...very agressive b/c now we have no port and his latest hosptial stay proved he has very bad veins (9 attemps for an IV and they still cpuld not get the line in!!!). Dr sends for an x-ray and he has pneumonia!!!! :scared1::scared1:Now we have a PICC line and he has missed another week of school!!! I think thats 4 weeks so far this year!!

Now to how I found this thread!! We have been to disney numerous times...we actually own in DVC! But I called MAW today b/c Brian wants to go on the new Disney Cruise Ship the Dream. So I started to surf the boards came across this thread and read the story of Piper and was truly touched!!! MAW was faxing the papers to his doctor today and I hope he will get approved. The last 8 weeks have been a nightmare, but he is a trooper and really keeps me upbeat!!! Sometimes I enjoy going to work,,,I have less medications to give and I may get a break!!! Well he has just informed me his medication is complete and he is ready for the next one!! So I woll be going, but will be back soon

AWESOME that you found this thread!! :goodvibes

I will PM you...just to make sure you see this. But I want to personally invite you to come join us on the Wish Trippers Thread - we are all over there planning wish trips (both cruises and Disney trips) and would love to have you. We also live life and I have honestly met some lifelong friends over there! Glad you found this thread!

Oh...and my name is Mary but people in real life call me Maroo. I am not a nurse...I do insurance for a medical clinic (oncology) and work as a CNA during the week for 2 different young ladies. I went to NP school at Vanderbilt for one semester and hated it (it was Fall of 2001 and 9/11 made me pretty homesick) - so I just play nurse now. :rotfl:

Welcome Mary..and thanks for reading. I should explain, I'm not a nurse, that was more part of a chief cook and bottlewasher type of explanation..maybe I should have put a :rolleyes: behind that...so hard online sometimes to tell inflections on here. Anyway! I'm glad you found the thread, obviously you know exactly what we're going through right now. One of my biggest fears is Piper's port becoming infected, it's just such a nice change from PICCs and IV's. When she got her port, I had asked about getting her one and was told they prefer not to do it on kids her age. So the next day they try to place a PICC (8 attempts, I was in the room watching and NOT a happy camper by the end) and no luck. The same surgeon came to see me again, and I must say was a bit sheepish when admitting maybe Piper needed a port. :rolleyes:

I very much prefer Piper being home rather than at Club Med, it's a lot more work for me, but so much more relaxing in general. I do all her needle changes, etc myself. I know a lot of people use home care, but honestly, I prefer doing it to having strangers in and out of my house and being on their schedule instead of our own. I also think it makes it easier on Piper. Even when she's in hosp, I do her port accessing and changes, per her request. We've had a few nurses get bent out of shape about it, but I really don't care. Okay, enough blabbing from me, lol..will look forward to getting to know you and your 3 better. You may want to swing by the community board, there's a thread just for wish trippers!

Wish Trippers Unite! Volume Two (http://www.disboards.com/showthread.php?t=2039777)

Well...you already gave her the link. You rock! :)

And you are totally a nurse...maybe not an "RN" - but you are a nurse day in and day out for your precious child. :love:

pipersmom
11-02-2009, 10:49 PM
First - the health update - Bless your heart. Still on O2 all day. That is a bummer. I think you made a GREAT decision to keep her home for the winter. Hopefully you guys can find some safe ways to keep her safe and well but also able to hang out with some other folks - as I totally understand getting on each others nerves after a while.

Woo Hoo on the wish granters coming!!!

Hermione! How cool is THAT! You guys have totally got to see the World of Harry Potter at Universal. It isn't open yet...but hopefully it will be by the time you guys get her wish granted!

Still praying for you guys.



Well...you already gave her the link. You rock! :)

And you are totally a nurse...maybe not an "RN" - but you are a nurse day in and day out for your precious child. :love:

Thank you, Maroo..you almost made me cry...I def need more sleep..they scheduled her IVs totally off this time, so I'm up til 12:30-1:00am and then back up at 6 to start the cycle all over again..lol...I am just an 8 hr kinda girl, I guess. I had completely forgotten about the World of Harry Potter coming to Universal, and yes, Piper would love it, the girl is a voracious reader (don't know where she gets that :rolleyes1) and has read up to Book 6. And thank you for the prayers, it means a lot .:lovestruc

stacy347
11-03-2009, 08:16 AM
Hugs to you and Piper :hug: ~ hopefully this winter will fly by for you guys! :goodvibes

pipersmom
11-03-2009, 09:28 AM
Hugs to you and Piper :hug: ~ hopefully this winter will fly by for you guys! :goodvibes

Thank you Stacy..I'm hoping it will too.:goodvibes :hug:

chrissid7
11-03-2009, 11:54 PM
ok Piper lil envelope went back in the mail today. I had 4 lil girls here who wanted to make a picture. I hope it makes her smile. Alyssa was more than happy to do it and wants to do it more. Maybe they could do a lil pen pal thing if piper is into it. :flower3:

pipersmom
11-04-2009, 12:13 AM
ok Piper lil envelope went back in the mail today. I had 4 lil girls here who wanted to make a picture. I hope it makes her smile. Alyssa was more than happy to do it and wants to do it more. Maybe they could do a lil pen pal thing if piper is into it. :flower3:

Chrissi..Piper would love that! I was thinking something along those same lines. When she was in 1st they had pen pals and were going to meet on the field trip..you can guess what happened I'm sure. Piper had been so excited to meet her. Especially with the two having so much in common, I think it could be a great thing!

pipersmom
11-06-2009, 10:30 PM
What could possibly be more exciting than meeting two people who are going to be making your dream come true? Not much! Our wish granters are two very special ladies named Mary and Jean. Jean called me on Monday to make arrangements to meet while Piper and I were at Burger King. Those of you following along know that Piper does not know we're planning the trip for March, so needless to say when I was on the phone in front of Piper at BK I couldn't mention the secret plan! I called Jean back and explained the surprise situation, and we actually moved the meeting to the local library as Jean was having some health issues and could not do stairs at all anyway.

:banana:Piper was very excited all day yesterday,:banana: kept asking if it was time to go yet. :) We got to the library about five minutes early, and Miss Thing definitely had ants in her pants! She needed to know how the wish granters would recognize her (I just assured her they would, not mentioning she was the only child in the library wearing O2..:rolleyes1), where we would sit down and talk to them, and if they would be nice. I said "Well Piper, do you think mean people would want to go around helping making children's wishes come true?" She said "Oh..I hadn't thought of that". That was very odd as Piper is very outgoing in general, participates in our hospital's telethon every year, has done newspaper and magazine articles! I think the fact that she was nervous just shows how important this is to her.

Evidently the anxiety wasn't going to last long! When Mary and Jean walked in, I immediately knew who they were..they had that "searching for someone" look on their faces. I pointed them out to Piper and she immediately got up, took herself and her O2 machine over to them and gave them absolutely huge hugs..almost enough to make Mommy jealous! Of course, this was the point that I started to mist up...luckily it was a public place so I quickly sucked the tears back in, but evidently nerves and emotion got to me as well, because I realized after we all sat down that I hadn't even introduced myself..sheesh.:confused:

As soon as we all got settled, (Piper had to have Jean sit next to her, which was so cute) Mary reached into her bag and pulled out...wait for it....


Make A Wish Barbie! Piper was very excited and ready to rip into the package immediately! I told her maybe after we were done, but that's a whole 'nother story that I'll talk about further down. We got down to business, we did all the Mommy ppwk first, ie..I won't sue MAW or GKTW should Piper be her usual graceful self and break a limb or stub a toe. Then we got to the Piper ppwk. The ladies each had their own copy, asking things like her favorite color, etc. They had asked about three questions when Piper asked Jean if she could see the sheet, then if she could fill it out! Jean and Mary both started laughing, and handed Piper a pen. I think doing it herself made Piper feel very important, and Jean told her that was the first time they'd ever had a wish kid who filled out her own paperwork!

I have to admit I was a bit anxious that Piper would change her wish request at the last minute, lol, just because it's the type of girl she is. Don't get me wrong, I want Piper to have whatever wish she wants, but boy would I have felt idiotic with all the plans I already have going in my head! So WDW and GKTW was her first choice wish, and for her second choice, she wants to meet Miranda Cosgrove (iCarly). Once everything was completed, I asked Mary and Jean if they would mind if I took a picture with them and Piper, and they were more than happy to comply. Once Piper took ten minutes to find "the perfect spot", I whipped out my camera. Now, my camera has been PMS'ing for the last few months, and I never really know when I turn it on how many pictures I'll actually get out of the deal. I got one taken, and got ready to take the second, when sure enough, it crapped out on me..grr!:headache: I am glad to have gotten the one good picture, but...eh. (We also got her haircut on Tues, so it's a new 'do!

http://i577.photobucket.com/albums/ss211/piperspics/10-14-09102-1.jpg

Mary, Piper, and Jean


When we went back to the table to gather our things, Mary says, innocently enough.."Well, Piper, I think we're all set for you to get your wish." Piper thought about it for about a millisecond, and suddenly pops out in the most perturbed voice...."Yes, in 2011!" I looked at Mary and Jean, they looked at me, and it was all we could do not to fall over laughing. :rotfl2: The surprise plan is still very much under wraps, apparently! So once everything was wrapped up, I thanked Jean and Mary for about the 200th time, Piper gave her hugs, and the ladies headed for the door. And suddenly..It's track star Piper! :car: That girl took after Mary and Jean like a lion after a fat, juicy gazelle! No joke, she took off so fast it tore the cannula right off her face! When they turned around at hearing the patter (ermm..pounding may be a better word) of Piper feet, she about tackled them and started hugging them again. She was just so appreciative of them.....makes me misty just thinking about it.


Okay, the MAW Barbie conundrum. I am not a "look at it, but don't play with it" parent, but the thing that keeps going through my head is that when Piper gets a bit older, I think she would really enjoy having the Barbie in mint condition as a nice reminder of her special MAW experience. Thus, we haven't opened it yet. Now, if Piper was a Barbie fanatic, I would have been more inclined, but to be honest Barbies are something she pulls out maybe once a year, and then she's done. If I thought I could get her another MAW Barbie, I would also let her open it in a heartbeat. Any opinions??[/COLOR]

StefaniLyn
11-07-2009, 12:23 AM
It sounds like you had a wonderful experience with Piper's Wish Granters! I'm glad they were able to assist you in keeping the secret a surprise for Piper!

I would say keep the barbie in the box. I agree that it is something she will apprciate it when she is older. There are several toys that I have kept for my girls like that. I put them in their baby box for safe keeping. However, when I do that, I usually try and buy them something comprable to it that they are allowed to play with. I'm sure Piper is old enough to understand if you decide to keep Make A Wish Barbie in the box. Let me know if you do find them for sale somewhere - I'd like to get Bella one as well!

And I love the new haircut! She looks adorable!

yinyanggirls
11-07-2009, 01:05 AM
Love the new 'do! And if your camera was only willing to take one shot, it got a good one. :thumbsup2

You'll have to tell your wish granters that you have Barbie stalkers hunting you down and ask them where we can get one.:rolleyes1 I would assume they got it from the chapter. Our wish granter seemed to have bought the gifts at WalMart before she came, but we are a pretty rural area. She lives near us, but we don't live near an office. It was very sweet of her to bring gifts.

Momofwishkid
11-07-2009, 01:18 PM
subbing- That is so sweet that Piper was so excited to meet her wish granters and the surprise is still intact!! It looks like we may be there in March also. :banana:

chrissid7
11-07-2009, 04:10 PM
OMG that is so sweet!!! Im so glad the meeting went great. Our girls are too funny!! I had the exact issue wih the Barbie. Alyssa got 1 too, she is not into barbie that much. She has a couple and of course she loved it when she saw it but I was thinking to myself that she wouldnt tear it open right away. I was wrong, she opened it. I managed to convince her when they left that we should just keep everything together in the box when she is not playing with it. So she put it in the box that night. She has only played with it once so Im hoping I can put it up for her soon.

I love her hair!!!! Sh eis such a cutie. You can see in her eyes how excited she is. I CANNOT WAIT FOR THE SURPRISE DAY!!!!:banana::banana::banana:

pipersmom
11-07-2009, 09:23 PM
It sounds like you had a wonderful experience with Piper's Wish Granters! I'm glad they were able to assist you in keeping the secret a surprise for Piper!

I would say keep the barbie in the box. I agree that it is something she will apprciate it when she is older. There are several toys that I have kept for my girls like that. I put them in their baby box for safe keeping. However, when I do that, I usually try and buy them something comprable to it that they are allowed to play with. I'm sure Piper is old enough to understand if you decide to keep Make A Wish Barbie in the box. Let me know if you do find them for sale somewhere - I'd like to get Bella one as well!

And I love the new haircut! She looks adorable!

Thank you! Good to know I'm not just being a mean momma! :laughing:

Also, I did some research last night, and found out Mattel made 6000 of these for wish kids only. I checked e-bay, etc, and there were none to be had. You might want to check with your chapter...

Love the new 'do! And if your camera was only willing to take one shot, it got a good one. :thumbsup2

You'll have to tell your wish granters that you have Barbie stalkers hunting you down and ask them where we can get one.:rolleyes1 I would assume they got it from the chapter. Our wish granter seemed to have bought the gifts at WalMart before she came, but we are a pretty rural area. She lives near us, but we don't live near an office. It was very sweet of her to bring gifts.

Thank you! We're very rural also, I would assume the chapter mailed them to the wish granters?

subbing- That is so sweet that Piper was so excited to meet her wish granters and the surprise is still intact!! It looks like we may be there in March also. :banana:

That would be very cool, I'm hoping at least one other fam on the boards will be there the same time that we are. I really thought Piper would be suspicious by now, but so far, so good.


OMG that is so sweet!!! Im so glad the meeting went great. Our girls are too funny!! I had the exact issue wih the Barbie. Alyssa got 1 too, she is not into barbie that much. She has a couple and of course she loved it when she saw it but I was thinking to myself that she wouldnt tear it open right away. I was wrong, she opened it. I managed to convince her when they left that we should just keep everything together in the box when she is not playing with it. So she put it in the box that night. She has only played with it once so Im hoping I can put it up for her soon.

I love her hair!!!! Sh eis such a cutie. You can see in her eyes how excited she is. I CANNOT WAIT FOR THE SURPRISE DAY!!!!:banana::banana::banana:

Thank you Chrissi, me too! And it is funny, I think a part of it is just being all wrapped up in the excitement of the moment. Tell Alyssa to be looking for mail later next week too ;)

pacrosby
11-09-2009, 02:23 PM
aha.....found you too!

I'm just trying to find all you wonderful ladies who were so quick to welcome me the other day! Haven't had a chance to go through your PTR yet but it's on my list. I did catch a picture of your Piper.....she's doll.

I'll try to catch up

Pamela:santa:

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

maroo
11-09-2009, 03:20 PM
How on EARTH did I miss THAT update!?!?!?!?!

I could just squeeze Piper's cheeks! She is so stinkin' cute!!!

2011!! :rotfl2: She is so cute!

Lauren can't even play with Barbie's at all and she wanted to open hers...and she is 16! I can't imagine trying to keep her from opening it!

I have no idea what the right answer is...but I feel for ya! :hug:

The update is wonderful! I can't wait for her to find out it is going to be SOON! :)

kdzbear
11-09-2009, 05:51 PM
I love the picture of Piper meeting with her Wish granters. It sounds as if you all had fun meeting one another!

pipersmom
11-09-2009, 08:34 PM
aha.....found you too!

I'm just trying to find all you wonderful ladies who were so quick to welcome me the other day! Haven't had a chance to go through your PTR yet but it's on my list. I did catch a picture of your Piper.....she's doll.

I'll try to catch up

Pamela:santa:

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

Thank you, Pamela! We're still very much in the early planning stages, don't have dates yet, but are shooting for early March.

How on EARTH did I miss THAT update!?!?!?!?!

I could just squeeze Piper's cheeks! She is so stinkin' cute!!!

2011!! :rotfl2: She is so cute!

Lauren can't even play with Barbie's at all and she wanted to open hers...and she is 16! I can't imagine trying to keep her from opening it!

I have no idea what the right answer is...but I feel for ya! :hug:

The update is wonderful! I can't wait for her to find out it is going to be SOON! :)

LOL Maroo...I suspect you missed it cause we had a ton of new families sign on over the weekend (Hooray!!) Def a good reason :goodvibes I decided not to let Piper open the Barbie. But..she also has not so much as mentioned poor MAW Barbie since the day she got it.:rotfl:


I love the picture of Piper meeting with her Wish granters. It sounds as if you all had fun meeting one another!

Thank you! One of the great things about Piper is that she is so enthusiastic about almost everything, and that enthusiasm is contagious. Between the two of us we prob could have lit the town for the night with our excited energy!

dawnbu40
11-10-2009, 03:28 PM
Hi Amanda!

Piper is adorable! Her appreciation for her Wish Granters is so precious! I am subscribing so I can hear all about your plans and your trip! March will be here before you know it! :goodvibes

pipersmom
11-10-2009, 03:54 PM
Hi Amanda!

Piper is adorable! Her appreciation for her Wish Granters is so precious! I am subscribing so I can hear all about your plans and your trip! March will be here before you know it! :goodvibes

Thank you, Dawn! She has always been very appreciative of the things people do for her, big or small. I think a part of is just her personality, and also knowing that we don't always do/get everything we want (budget), so when special things come up, she just appreciates them all the more.

karenwwu
11-10-2009, 04:12 PM
Coming out of lurkdom to say hello and to tell you what a wonderful mom you are and how you have raised the sweetest little girl with the biggest of hearts. I love that picture in the library. You can just see the excitement and love oozing out of Piper. Thanks for sharing your story and I look forward to reading updates.

PS I live in Roanoke and if you and Piper should ever have to come back (which I would not want for obvious reasons), let me know and I can host you two and visit/meet you.

pipersmom
11-10-2009, 06:46 PM
Coming out of lurkdom to say hello and to tell you what a wonderful mom you are and how you have raised the sweetest little girl with the biggest of hearts. I love that picture in the library. You can just see the excitement and love oozing out of Piper. Thanks for sharing your story and I look forward to reading updates.

PS I live in Roanoke and if you and Piper should ever have to come back (which I would not want for obvious reasons), let me know and I can host you two and visit/meet you.

:welcome: Karen! Thank you so much for the sweet words, and coming out of lurkdom! I had originally started the PTR as a journal of sorts, that I could keep and Piper could see as she gets older, but I'm really enjoying meeting all the people who have come aboard as well.

We're actually in and out of Roanoke at least once a month (Dr's appts, shopping, etc) and I'll definitely let you know next time we come in for a long haul hosp trip. Piper would love having visitors, and an adult to talk to is always welcome, lol.

stacy347
11-10-2009, 07:15 PM
I'm so happy for you guys!!:grouphug: It's going to be so exciting the day you let the news out about WDW in 2010 ~ make sure you get a good pic of Piper's face that day!

pipersmom
11-10-2009, 08:31 PM
I'm so happy for you guys!!:grouphug: It's going to be so exciting the day you let the news out about WDW in 2010 ~ make sure you get a good pic of Piper's face that day!

Thank you, Stacy :lovestruc I can't wait to see her face either, she asks something else about WDW on an almost daily basis! I'll have my camera, and my mom will have hers, so between the two of us, we should nail it. What I'd really like is to get video (!) but going to have to work out how we could do it..I don't think anyone in the fam has a video camera. Oh well, still plenty of time to figure it out. :)

pacrosby
11-10-2009, 11:37 PM
I had originally started the PTR as a journal of sorts, that I could keep and Piper could see as she gets older, but I'm really enjoying meeting all the people who have come aboard as well.


That's why I initially did it too. I do enjoy a bit of, what husband likes to refer to as, creative writing LOL so this seemed like a great way to journal our experience and have some fun. Never in a million years did I expect to meet so many wonderful people. This has been quite a start to what will likely turn out to be the most amazing vacation experience ever!

Just another note.....my Matty is like your Piper. So incredibly enthusiastic about EVERYTHING and it is infectious. He has us in stitches around this house sometimes he is such a little goof ball (around us anyway, he's a bit reserved around those he doesn't know but that is slowly starting to change). I hear that alot, about kids with some serious medical condition or another. They ARE amazing!

Pamela :santa:

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

pipersmom
11-10-2009, 11:55 PM
Just another note.....my Matty is like your Piper. So incredibly enthusiastic about EVERYTHING and it is infectious. He has us in stitches around this house sometimes he is such a little goof ball (around us anyway, he's a bit reserved around those he doesn't know but that is slowly starting to change). I hear that alot, about kids with some serious medical condition or another. They ARE amazing!

Pamela :santa:

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

Piper is a bit like Anthony Bourdain...she has no reservations! :rotfl: Shortly after we moved back here (she was 3 1/2 or so...) we went to the grocery store, and the clerk was talking to her, telling her how cute she was, etc. So the clerk says, "well, you just stay here and I'll take you home with me". Piper immediately pops out with.. "OK!". It was one of those moments that cracked me up and gave me serious reservations about her friendliness at the same time..lol. I guess things never change though, 'cause at the grocery store a couple of days ago, we're checking out, I put my personal hygiene items on the belt (there's a lady checking out, and a line behind me of 3 or 4 people) and out she comes with "Mommy..why are you buying Playtex?" LOL..my immediate response was "So you can ask me embarrassing questions in the checkout line." Everyone laughed, but I know my face had to have been red! Gotta love outgoing kids!

chrissid7
11-11-2009, 12:50 AM
OMG thats funny!!! :rotfl2: from the mouths of babes!


Piper is a bit like Anthony Bourdain...she has no reservations! :rotfl: Shortly after we moved back here (she was 3 1/2 or so...) we went to the grocery store, and the clerk was talking to her, telling her how cute she was, etc. So the clerk says, "well, you just stay here and I'll take you home with me". Piper immediately pops out with.. "OK!". It was one of those moments that cracked me up and gave me serious reservations about her friendliness at the same time..lol. I guess things never change though, 'cause at the grocery store a couple of days ago, we're checking out, I put my personal hygiene items on the belt (there's a lady checking out, and a line behind me of 3 or 4 people) and out she comes with "Mommy..why are you buying Playtex?" LOL..my immediate response was "So you can ask me embarrassing questions in the checkout line." Everyone laughed, but I know my face had to have been red! Gotta love outgoing kids!

Momofwishkid
11-11-2009, 02:01 AM
That is so funny and embarassing at the same time :rotfl2: Reminds me of my youngest DS he's always coming of with new ways to make us laugh with his outgoingness.

yinyanggirls
11-11-2009, 02:11 AM
Piper is a bit like Anthony Bourdain...she has no reservations! :rotfl: Shortly after we moved back here (she was 3 1/2 or so...) we went to the grocery store, and the clerk was talking to her, telling her how cute she was, etc. So the clerk says, "well, you just stay here and I'll take you home with me". Piper immediately pops out with.. "OK!".

A couple of months ago I was at the store with Tessa and after a long shopping trip full of tantrums and attitude I threatened to send her home with the family in front of me. As they started to leave the store she said she wanted to go with them and threw yet another tantrum when I wouldn't let her!

pipersmom
11-11-2009, 07:35 AM
OMG thats funny!!! :rotfl2: from the mouths of babes!

That is so funny and embarassing at the same time :rotfl2: Reminds me of my youngest DS he's always coming of with new ways to make us laugh with his outgoingness.

A couple of months ago I was at the store with Tessa and after a long shopping trip full of tantrums and attitude I threatened to send her home with the family in front of me. As they started to leave the store she said she wanted to go with them and threw yet another tantrum when I wouldn't let her!

She definitely keeps me on my toes! Melissa, I don't dare say anything like that to Piper, she'd be apt to want to do the same thing, lol.

maroo
11-11-2009, 09:49 AM
Oh my!

You guys have me totally cracking up this morning!

Playtex! :rotfl:

Sending your kids home with other famiilies. :rotfl2:

pipersmom
11-11-2009, 10:12 PM
Oh my!

You guys have me totally cracking up this morning!

Playtex! :rotfl:

Sending your kids home with other famiilies. :rotfl2:

I had such a good time with everyone late last night and this morning. Methinks we need to figure out how to do a Wish family chat one night, or maybe one night a month, something. So much fun talking to people live! (Or close to it)

chrissid7
11-11-2009, 10:16 PM
I had such a good time with everyone late last night and this morning. Methinks we need to figure out how to do a Wish family chat one night, or maybe one night a month, something. So much fun talking to people live! (Or close to it)

I agree! I have enjoyed meeting everyone so much that I think I will never leave here!

:worship: DISBOARDS:worship:

jordanyosh
11-11-2009, 10:21 PM
great meeting of wish granters! it's great that Piper is truly appreciative! What a great daughter.

I'm pleasantly surprised she is completely in the dark. You are a good secret keeper.

pipersmom
11-11-2009, 10:28 PM
First a short update! Piper is off IVs and deaccessed as of this evening, hooray!! :banana::banana::dance3::woohoo::worship: Which means more sleep for, and a more pleasant Mommy! She was also off O2 part of the day with a sat of 95. I'll monitor her throughout the day tomorrow with cautious optimism that maybe we can just go to O2 when she's asleep!

Now..onto the fun stuff! I had promised this interview before all the ballyhoo:sick: and hospital stay, etc..and actually had it all ready to go before life intervened! So without further ado..an interview with Piper...


What is the first ride you want to ride when you get to WDW? I want to ride Space Mountain..I've been dreaming about it.


Are there any rides you don't want to ride? No, but I'll only ride the rides that catch my eye.


What character do you want to meet the most? The Genie.


What is your favorite Disney movie? Aladdin (Are we seeing a theme here?)


What is your favorite Disney song? You Ain't Never Had a Friend Like Me


What is the best thing about having CF? Being on tv. ( I am very much a silver lining type of person, and am doing my best to instill the same thing in her. She looked at me like I was nuts when I asked her that, but it didn't take her long to come up with an answer!)


What is the worst thing about having CF? The needles.


If you could pick anything to happen to you at WDW what would it be? For one of the characters to ride a ride with me.


What's the best thing that ever happened to you? Getting out of the hospital and going to get ice cream!


What's your favorite tv show? i-Carly and Spongebob (we don't have cable, and she has dvds of these. There are times when she'll pop out with.."Can we go to Gram's so I can watch cable?" lol)


Favorite color? Pink!


What's your favorite thing to do? Read and play my DS.


Favorite food? Pasta


Favorite restaurant? Chinese (So someone tell me why it is whenever I ask her where she wants to eat...I get McNastys? lol)


Favorite Subject? Science


And last but not least...What do you want to be when you grow up? A marine biologist/artist/orinthologist/naturalist. (I think I'm going to have a very busy girl! LOL)


We are at the point now where we talk about Disney and GKTW at least once a day..she brings it up. She's very excited about all the parties and things to do at GKTW aside from all the Disney/US/Seaworld stuff. She was very serious during the whole "interview", I kept waiting for her to pop out with something funny, and no dice! That's what I get for putting the poor thing on the spot.

jordanyosh
11-11-2009, 10:33 PM
I'm glad to hear Pipers on the mend:thumbsup2

Your girl is adventurous. I like that.

yinyanggirls
11-11-2009, 10:35 PM
Too cute! What a little smarty pants! How cute that she sadi getting out and getting ice cream was the best thing that ever happened to her!:rotfl: Makes you think...

pipersmom
11-11-2009, 10:41 PM
great meeting of wish granters! it's great that Piper is truly appreciative! What a great daughter.

I'm pleasantly surprised she is completely in the dark. You are a good secret keeper.

I'm glad to hear Pipers on the mend:thumbsup2

Your girl is adventurous. I like that.

Thanks, Jordan :) I think the only reason I'm being able to keep the surprise element going is that she knows we're planning the trip, she just doesn't know the dates! I would never be able to keep it secret that we're going, I get too excited, lol. I'm very glad the O2 situation seems to be getting better, I was honestly afraid we may be looking at a permanent situation after 3 weeks on it with little improvement. I was just picturing doing WDW with an O2 tagalong..I know there are people who have to do it, but I was dreading the thought of it, to be honest. Then again...we could have always taken pictures of the machine in front of all the touristy sights..get a picture of Cinderella hugging it, etc, :rotfl: Who knows, we may still end up needing it.

pipersmom
11-11-2009, 10:43 PM
Too cute! What a little smarty pants! How cute that she sadi getting out and getting ice cream was the best thing that ever happened to her!:rotfl: Makes you think...

I know..all the things we've done, and that's what she's come up with...then again, she had only been out for about 2 weeks, and that time was her first visit to a Ben & Jerry's, so she had been very excited! (We occasionally buy B & J's pints at the grocery for a special treat..)

jordanyosh
11-11-2009, 10:44 PM
you could dress it up too...;)

pipersmom
11-11-2009, 10:47 PM
Laughing out loud at that one, thank goodness she's asleep! Plan the outfits around the parks..oh geez! The sad thing is though..she would LOVE it..LOL. I think she spends way too much time with me for her own good to appreciate something like that!

jordanyosh
11-11-2009, 10:57 PM
Laughing out loud at that one, thank goodness she's asleep! Plan the outfits around the parks..oh geez! The sad thing is though..she would LOVE it..LOL. I think she spends way too much time with me for her own good to appreciate something like that!

Sense of humor is a great quality!

Name to O2 tanks!

yinyanggirls
11-11-2009, 11:19 PM
Oh you guys are silly. :rolleyes:
I just wanted to share with Pipersmom this TR:
http://disboards.com/showthread.php?t=2287203
I don't know exactly how long the Flower and Garden Festival goes, but since you and I are definitely going in spring it should be a good one to check out. I have read some of it, but the pics weren't showing. The author just replied that the pics should be back up tomorrow.

pipersmom
11-11-2009, 11:49 PM
Thanks, Melissa! Just as I was getting ready to go to bed too :lol: we both know how that story goes! Will check out the first few pages tonight unless I get completely hooked..after all..I did have a nap today with Piper!

chrissid7
11-12-2009, 12:59 AM
I am so happy to hear the great news!!!!!!!!! Now sleep lady sleep! Thats awesome about the o2.... just curious at what point or level for Piper do they require her to be on 02. Thats something that only seems to be taking place in the hospital for Alyssa but I have been wondering why we dont monitor o2 at home, especially with her lung function being so low. Im asking this week.

95-96 is her baseline.:sad2:

I have been wanting to do an interview with Alyssa for months now but honestly we have talked about disney so much now I could answer all of the questions for her, but you have inspired me to do it! I loved pipers responses to them, I swear I am going to burst before you guys go! I am so excited for you both! :cheer2:

Momofwishkid
11-12-2009, 01:03 AM
Yay for Piper!! It sounds like she is having a good day. The interview was so cute. Dont you just love the answers they come up with. It seems their always serious when your expecting sillyness and vise versa. :rotfl:

pipersmom
11-12-2009, 08:37 AM
I am so happy to hear the great news!!!!!!!!! Now sleep lady sleep! Thats awesome about the o2.... just curious at what point or level for Piper do they require her to be on 02. Thats something that only seems to be taking place in the hospital for Alyssa but I have been wondering why we dont monitor o2 at home, especially with her lung function being so low. Im asking this week.

95-96 is her baseline.:sad2:

I have been wanting to do an interview with Alyssa for months now but honestly we have talked about disney so much now I could answer all of the questions for her, but you have inspired me to do it! I loved pipers responses to them, I swear I am going to burst before you guys go! I am so excited for you both! :cheer2:

Good morning! I did get some sleep, lol, threatened Piper with death if she woke me up before 8! She normally wakes up around 7 or so, so I just made sure to leave her a snack and the remote...lazy mommy!

Piper's baseline used to be 99-100 (before this summer) and they want her at least 95 during the day without her pulse being in 120-130s. Nighttime number needs to be the same, but she really dips at night, so :confused3 I know..I can't wait for you guys to go too!! Especially being from our chapter, you'll have the inside scoop! Are they renting a vest for Alyssa while you're down there, or are you having to haul yours?

Yay for Piper!! It sounds like she is having a good day. The interview was so cute. Dont you just love the answers they come up with. It seems their always serious when your expecting sillyness and vise versa. :rotfl:

She did have a good day. Thank you! And yes, there's no predicting at any time what will pop out of her mouth, God love her!

kdzbear
11-12-2009, 09:08 AM
I am so happy that Piper is feeling better and you both can plan your trip together! :banana:

dawnbu40
11-12-2009, 09:13 AM
I love the interview with Piper! I'm with her, I want to ride a ride with a character too :goodvibes

pipersmom
11-12-2009, 09:24 AM
I am so happy that Piper is feeling better and you both can plan your trip together! :banana:

I am too! We had planned a trip to DC that we had to cancel when she got sick, and she really loves looking through the guidebooks, etc. It's going to be a blast!

I love the interview with Piper! I'm with her, I want to ride a ride with a character too :goodvibes

She wants to ride Aladdin's Flying Carpets with the Genie (I think she would marry him if she could), and I'm going to try to see what I can figure out when we get closer..I know it's not an unheard of thing to happen.

maroo
11-12-2009, 09:41 AM
I love the interview questions!

We need some more of those! popcorn::

You could do her must do's for each park! :rolleyes1


I love the idea of dressing up the O2 - if you have to have it with you - or get the characters to autograph a cover for it...? Something you can take off and put back on. That would be cool!

chrissid7
11-12-2009, 09:54 AM
You know thats a good question about the vest. Alyssa has refused to use the vest since she got the MIC-Key G-tube. She is afraid it will mess it up and with all of the other things we had going on at the time I didnt stress it. So I have been doing all of the therapies by hand (she prefers it too but it takes sooooo much time out of our day). I have been talking to her about trying the vest and I think today she might actually do it. We only used it for treatments in th morning, but it sure did make a difference haveing that extra 20-30 before she went off to school. :rainbow:

pipersmom
11-12-2009, 10:20 AM
I love the interview questions!

We need some more of those! popcorn::

You could do her must do's for each park! :rolleyes1


I love the idea of dressing up the O2 - if you have to have it with you - or get the characters to autograph a cover for it...? Something you can take off and put back on. That would be cool!

Such a cool idea for the O2 if we need it, Maroo..I will def make a cover when the time comes if we need to do that! And must-dos is a great idea, I think we'll do that after she knows the dates and can be more involved with the planning. :goodvibes

You know thats a good question about the vest. Alyssa has refused to use the vest since she got the MIC-Key G-tube. She is afraid it will mess it up and with all of the other things we had going on at the time I didnt stress it. So I have been doing all of the therapies by hand (she prefers it too but it takes sooooo much time out of our day). I have been talking to her about trying the vest and I think today she might actually do it. We only used it for treatments in th morning, but it sure did make a difference haveing that extra 20-30 before she went off to school. :rainbow:

Holy guacamole, Chrissi! :scared1: My admiration for you just went up at least ten fold! I hadn't thought about the g-tube issue..Piper hates using hers with her port accessed, but we just leave the left shoulder unbuckled. If you loosened the bottom strap or padded the MIC-Key do you think that would make any difference to her? We started doing the vest on Piper when she was 2.5, there have been very few times I've had to go back to hand CPT and it killed me! Do you at least use a percussor or something? Piper does the vest for 50 min at a time, I can't imagine trying to do it that long by hand....

karenwwu
11-12-2009, 10:21 AM
We're actually in and out of Roanoke at least once a month (Dr's appts, shopping, etc) and I'll definitely let you know next time we come in for a long haul hosp trip. Piper would love having visitors, and an adult to talk to is always welcome, lol.

:thumbsup2

chrissid7
11-12-2009, 02:08 PM
Such a cool idea for the O2 if we need it, Maroo..I will def make a cover when the time comes if we need to do that! And must-dos is a great idea, I think we'll do that after she knows the dates and can be more involved with the planning. :goodvibes



Holy guacamole, Chrissi! :scared1: My admiration for you just went up at least ten fold! I hadn't thought about the g-tube issue..Piper hates using hers with her port accessed, but we just leave the left shoulder unbuckled. If you loosened the bottom strap or padded the MIC-Key do you think that would make any difference to her? We started doing the vest on Piper when she was 2.5, there have been very few times I've had to go back to hand CPT and it killed me! Do you at least use a percussor or something? Piper does the vest for 50 min at a time, I can't imagine trying to do it that long by hand....


Alyssa sisnt even get the vest untill she was 7 so I had already been doingit by hand for 5 years. I do 5 minutes per side so it ends up taking us about 30 mins 4xday. That doesnt include her nebs. I dont use a percusser either because I can actually get a great "pop" with my hand that just works better.

When she got the vest we started using it 2 times a day and I did the other 2. When she is in school though we rarely get 4 in, so I like to use the vest in the morning, I do the evening and night time one. I actually started thinking about how to sew a beld that would have a nice lil padded pillow that could be placed over the tube and tied so that the vest doesnt rub.:confused3

We are alos trying to come up with something that she can cover it with while at Disney because we are worried about it getting hit or pulled on by lap bars and things coming over and over all just for protection.

I think I am going to post that question on the WTU page too. :idea:

BTW she backed out on the vest this morning so I am going to try again for the later treatment. Her new Mic-key button came today too so now sheis all upset because we have go in and have it changed. I havent done it yet and would rather have someone there just in case. He is pretty upset about it. :sad2:

chrissid7
11-12-2009, 02:09 PM
jeeeze sorry for all of the typo's. I think I need a new keypad!:headache:

maroo
11-12-2009, 02:34 PM
Wow.

I, too, am in awe of all the hand CPT. That hurts. And quite time consuming! :eek:

pipersmom
11-12-2009, 09:07 PM
jeeeze sorry for all of the typo's. I think I need a new keypad!:headache:

I can be the typo queen..I'm just very ermm..uptight about my typos, so I usually double check, lol.


Alyssa sisnt even get the vest untill she was 7 so I had already been doingit by hand for 5 years. I do 5 minutes per side so it ends up taking us about 30 mins 4xday. That doesnt include her nebs. I dont use a percusser either because I can actually get a great "pop" with my hand that just works better.

When she got the vest we started using it 2 times a day and I did the other 2. When she is in school though we rarely get 4 in, so I like to use the vest in the morning, I do the evening and night time one. I actually started thinking about how to sew a beld that would have a nice lil padded pillow that could be placed over the tube and tied so that the vest doesnt rub.:confused3

We are alos trying to come up with something that she can cover it with while at Disney because we are worried about it getting hit or pulled on by lap bars and things coming over and over all just for protection.

I think I am going to post that question on the WTU page too. :idea:

BTW she backed out on the vest this morning so I am going to try again for the later treatment. Her new Mic-key button came today too so now sheis all upset because we have go in and have it changed. I havent done it yet and would rather have someone there just in case. He is pretty upset about it. :sad2:

I don't blame you for wanting someone there, the first couple times I accessed Piper's port I did the same thing. I'm sorry she's so upset about it, it sucks when our kids need something like that done, it has to be done, and there's really no making it easy. We've actually tried dosing Piper with versed before I access her, but it did not help at ALL! When the stress level is at a certain point I think there's nothing we can do short of knocking them out completely, but of course with CF lungs, can't do that either.. :headache: I don't know what kind of vest you all use, but Hill-Rom makes a pad specifically for things like ports and Mic-Keys, if you call them they'll send it free as well..it's about 1.5-2 inches thick dense foam. Might be worth a shot, you could probably attach some sort of strap to it.

Wow.

I, too, am in awe of all the hand CPT. That hurts. And quite time consuming! :eek:

It does hurt..my forearms killed me for the week I had to do it on Piper..and being the :littleangel: that she is, she HATES hand CPT, which just added to the fun, lol.

chrissid7
11-13-2009, 12:33 AM
I can be the typo queen..I'm just very ermm..uptight about my typos, so I usually double check, lol.




I don't blame you for wanting someone there, the first couple times I accessed Piper's port I did the same thing. I'm sorry she's so upset about it, it sucks when our kids need something like that done, it has to be done, and there's really no making it easy. We've actually tried dosing Piper with versed before I access her, but it did not help at ALL! When the stress level is at a certain point I think there's nothing we can do short of knocking them out completely, but of course with CF lungs, can't do that either.. :headache: I don't know what kind of vest you all use, but Hill-Rom makes a pad specifically for things like ports and Mic-Keys, if you call them they'll send it free as well..it's about 1.5-2 inches thick dense foam. Might be worth a shot, you could probably attach some sort of strap to it.

Thanks for the tip I will call them tomorrow. I guess Im just used to it becuase honestly I have family that gets nervous when Im doing CPT lol they say it sounds like im going to crack a rib on her but she really likes it when I do it and I do feel like I can really get those junky lobes good. Sometimes she can feel it and tell me where to hit her harder lol, weird but true.



It does hurt..my forearms killed me for the week I had to do it on Piper..and being the :littleangel: that she is, she HATES hand CPT, which just added to the fun, lol.

It must just be because ive done it so much and for so long, but when she is in the hospital and they are doing it all, when I get home I have to get readjusted to it all, I will get really sore.

jordanyosh
11-13-2009, 02:00 AM
I like Maroo's idea if you have the O2 tank to get autographs.

All7OfUs
11-13-2009, 04:58 AM
Hey There, Hi There, Ho There!!

Finally making my way over here to join in the fun! Sorry it has taken me so blessed long! I admit I didn't read too much of the in-between chit-chat, but did catch the interview! Great ??s :thumbsup2

Piper is such a cutie pie! What a super mom you are!

pipersmom
11-13-2009, 08:47 AM
I like Maroo's idea if you have the O2 tank to get autographs.

I really do too Jordan, and will definitely do that if she has to take it along!

Hey There, Hi There, Ho There!!

Finally making my way over here to join in the fun! Sorry it has taken me so blessed long! I admit I didn't read too much of the in-between chit-chat, but did catch the interview! Great ??s :thumbsup2

Piper is such a cutie pie! What a super mom you are!

:welcome: I'm glad you made it over! Thank you for the sweet words.:lovestruc Piper is cute and just a good kid in general..there are times I have to remind myself of that as I think about throttling her...lol. She just really deserves this trip :)

GreatBiscuit
11-13-2009, 06:19 PM
What an amazing story! You had me misty eyed more than once. I'm so excited about Piper's MAW trip! I can't wait to see how it all turns out!

pacrosby
11-13-2009, 08:44 PM
I do love your interview. Did you happen to get it on video? I should do something like that with Matty.

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

pipersmom
11-13-2009, 09:06 PM
What an amazing story! You had me misty eyed more than once. I'm so excited about Piper's MAW trip! I can't wait to see how it all turns out!

:welcome: 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 !:scared: 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:santa:
Matty's Wish Trip http://www.disboards.com/showthread.php?t=2325607

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...:rotfl:



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. :sad1: 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. :goodvibes I can stop being the medicine and schoolwork nag, and go back to being just the medicine nag..:lmao:

chrissid7
11-13-2009, 11:56 PM
:welcome: 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 !:scared: 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.




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...:rotfl:



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. :sad1: 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. :goodvibes I can stop being the medicine and schoolwork nag, and go back to being just the medicine nag..:lmao:

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!:cheer2:

pipersmom
11-14-2009, 12:03 AM
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!:cheer2:

I didn't realize Alyssa was on homebound as well :) 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. :headache: They might just be getting tired of me, lol.

Momofwishkid
11-14-2009, 12:08 AM
[QUOTE=pipersmom;34325682



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. :sad1: 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. :goodvibes I can stop being the medicine and schoolwork nag, and go back to being just the medicine nag..:lmao:[/QUOTE]

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. :)

pipersmom
11-14-2009, 12:11 AM
Piper was only in school for a total of 3 weeks this year, and with winter coming, it just wasn't worth the stress. It is nice, Piper's teacher had actually come to visit Piper in the hosp several times, and is the only school employee who ever took the time to do that. She truly cares about her, and is so wonderful with her. I almost cried when I found out that was who would be doing the homebound. Sheesh..I'm way too sappy..lol.

yinyanggirls
11-14-2009, 01:31 AM
Oh man, that stinks. I was so happy to hear she was off. I can't imagine having that type of condition and NOT having a pulse-ox. My grandmother is living with pulmonary fibrosis and she has that thing on her finger most of the day. My mom has to turn up her air whenever she gets up to eat, use the bathroom, get dressed, undressed, etc. It's also handy (for her) as a teaching tool. By watching what her oxygen does she can learn to control it. She was doing well until about a year ago so she's still kind of learning how to live outside the hospital. Sorry to turn this into my family, it's the closest thing I have to relate. I know it's a constant worry and something you always have to be aware of. Does this mean more late nights?

jordanyosh
11-14-2009, 01:35 AM
Glad she is getting someone she likes and can learn from!

All7OfUs
11-14-2009, 07:04 AM
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!!:teacher::love:

pipersmom
11-14-2009, 08:06 AM
Oh man, that stinks. I was so happy to hear she was off. I can't imagine having that type of condition and NOT having a pulse-ox. My grandmother is living with pulmonary fibrosis and she has that thing on her finger most of the day. My mom has to turn up her air whenever she gets up to eat, use the bathroom, get dressed, undressed, etc. It's also handy (for her) as a teaching tool. By watching what her oxygen does she can learn to control it. She was doing well until about a year ago so she's still kind of learning how to live outside the hospital. Sorry to turn this into my family, it's the closest thing I have to relate. I know it's a constant worry and something you always have to be aware of. Does this mean more late nights?

No, we don't constantly monitor, it's a several times during the day thing. When we do monitor she's sitting on her bed usually, so if it's low there, it's usually lower when she's up and about.


Glad she is getting someone she likes and can learn from!

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!!:teacher::love:

We were both extremely excited when we found it who it was. It can really make homebound into a wonderful experience or a PITA depending on the teacher. We've had classroom teachers in the past that it would take two weeks to get a weeks worth of assignments from, and homebound teachers who didn't care about Piper's schedule and were not flexible at all about the timing.

MomsOf2boys
11-14-2009, 10:33 AM
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. :surfweb:

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.:hug:

punkin413
11-14-2009, 12:14 PM
i'm joining in....be back later to catch up!

pipersmom
11-14-2009, 09:11 PM
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. :surfweb:

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.:hug:

:welcome: ! 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. :goodvibes :hug:

i'm joining in....be back later to catch up!

:welcome:! Hooray! Welcome aboard punkin! :banana:

MomsOf2boys
11-15-2009, 09:23 PM
:welcome: ! 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. :goodvibes :hug:
:

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. :laughing: Maybe they are bank robbers or something and just haven't told me.:confused3 I will look for unmarked bills. :rotfl2:

pipersmom
11-15-2009, 09:26 PM
I'm trying to stay pretty active by posting every 4-5 days, even with our trip still in early stages. I'd also like all of you reading to feel like you know us, even just a little bit. Soo..without further ado some pictures of Piper with one of her top sleep inducers..her vest! Even though she's been doing the vest for 6 yrs, it still cracks me every time I see her sleeping with it on. I've approximated her age in these..pay no attention to the date stamp, I ermm..haven't fooled around with the cam enough to get it fixed or turned off :laughing:
http://i577.photobucket.com/albums/ss211/piperspics/sosweet-1-1.jpg

About 5 yrs old here..I miss this age!
http://i577.photobucket.com/albums/ss211/piperspics/10-14-09030-1.jpg

About 7 here...asleep sitting up! Wish I could do that :)

http://i577.photobucket.com/albums/ss211/piperspics/10-14-09.jpg

8 yrs old! Yes..this one is from last night..still makes me giggle every time!












7 yrs old..sitting up on the floor asleep..I wish I could sleep like that!

8 yrs old..yes..this one was from last night! LOL

pipersmom
11-15-2009, 09:34 PM
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. :laughing: Maybe they are bank robbers or something and just haven't told me.:confused3 I will look for unmarked bills. :rotfl2:

I saw your twitter page! I don't do any text on my cell, but will look forward to seeing the food report if you decide to do it! :rotfl: If you find some of those unmarked bills..send some our way...

chrissid7
11-16-2009, 12:39 AM
The pics of piper are just to cute! Alyssa would try to fal asleep with her on but always complained that she was too hot. It doesnt take much though to make her hot. I have to admit that if I laid beside her when she does her I start to doze off too lol. Its that steady motion like a car ride I guess lol. How was pipers O2 over the weekend? I hope she is feeling well! Ive been missing the boards this weekend. I did a couple peeks but not my usual.

All7OfUs
11-16-2009, 12:49 AM
I just can't imagine the hard work you've put into Piper's health!! You're my super-hero!!

Sweet pictures!! I have one of my daughter when she was about 3 that is a little similar. We were at some friends' house, and they had one of those bouncy spring horses. She was getting off and fell asleep half on it/ half off. It was so funny!!

pipersmom
11-16-2009, 08:47 AM
The pics of piper are just to cute! Alyssa would try to fal asleep with her on but always complained that she was too hot. It doesnt take much though to make her hot. I have to admit that if I laid beside her when she does her I start to doze off too lol. Its that steady motion like a car ride I guess lol. How was pipers O2 over the weekend? I hope she is feeling well! Ive been missing the boards this weekend. I did a couple peeks but not my usual.

Good morning! I think everyone is quieter during the weekend on here, proves that we DO have lives..lol. Right now we're oxygen-free, last night asleep she was satting about 95...this morning 96-97. I'm hopeful, but after last time, I am not counting on anything!

I just can't imagine the hard work you've put into Piper's health!! You're my super-hero!!

Sweet pictures!! I have one of my daughter when she was about 3 that is a little similar. We were at some friends' house, and they had one of those bouncy spring horses. She was getting off and fell asleep half on it/ half off. It was so funny!!

Thank you :) 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? :headache:

Kids are so great at sleeping at the drop of a dime...until you try to get them to go to bed, anyway...:laughing: 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.

maroo
11-16-2009, 10:43 AM
She is so stinkin' cute!!!

:lovestruc

I have never seen a vest working... is it loud? Does it just shake her all up? I can't believe she could sleep with that thing on? :eek:

jordanyosh
11-16-2009, 10:49 AM
What does the vest do? Does it have to do with her O2?

by the way, I am a fan of sleeping pix....;)

Momofwishkid
11-16-2009, 10:55 AM
Piper is so adorable! Love the sleepy pics.

pipersmom
11-16-2009, 11:10 AM
She is so stinkin' cute!!!

:lovestruc

I have never seen a vest working... is it loud? Does it just shake her all up? I can't believe she could sleep with that thing on? :eek:

What does the vest do? Does it have to do with her O2?

by the way, I am a fan of sleeping pix....;)

Good morning! I don't think the vest is particularly loud, but I'm used to it..when it's going I can hear it from anywhere, but we're in a singlewide trailer, so it's not like the noise has far to travel..lol. Basically the machine sends oscillations of air into the vest, which vibrates her lungs to try to keep the mucus moving the way it should rather than all sticking to the walls of her lungs. It was designed to replace doing CPT by hand (the pounding on the chest and back with a cupped hand.) I'm trying to think of what to compare it to on a vibration level...I don't know if you've ever seen one of the old exercise machines where the belt went around your hips, then it supposedly "jiggled" the fat away? That type of vibration, but without the actual movement. When she sings with it on, she has the greatest falsetto..lol.

Jordan..I had completely forgotten about all the sleeping pics you take, too funny! At least I'm in good company. ;)

Piper is so adorable! Love the sleepy pics.

Thank you! Eventually I'll post a few more "normal" pics, lol.

jordanyosh
11-16-2009, 11:39 AM
Thanks for the detailed explanation. It helped me get a visual and also is helping me get to know how much work it takes to care for her.

Great mom you are

StefaniLyn
11-16-2009, 11:40 AM
those pictures are priceless. I especially like to see the progression in age. Too stinkin cute! Sorry to hear about the setback with O2 and I hope she is able to be off it again soon!

pipersmom
11-16-2009, 02:54 PM
Thanks for the detailed explanation. It helped me get a visual and also is helping me get to know how much work it takes to care for her.

Great mom you are

those pictures are priceless. I especially like to see the progression in age. Too stinkin cute! Sorry to hear about the setback with O2 and I hope she is able to be off it again soon!

Thanks guys! I love seeing the age progression pics as well, almost makes me want to do it again. Stefani, it was too funny, when Piper and I were looking at your report earlier, all of a sudden Piper pops out with..."Man, I'm jealous"..I thought for a minute and couldn't figure it out..asked her what she was jealous of..she says "they're leaving in 2 weeks and 3 days!". Gotta love tickers!

pipersmom
11-17-2009, 10:06 PM
Good News Tonight!! :love::woohoo::dance3::cheer2::banana:

First..Piper lost a tooth today..hooray! No more tormenting Mommy by popping it out of its' socket to hang by a thread. It's ironic..I can poke the kid with needles and watch her minor surgeries, but a loose tooth grosses me out! :scared: Then tonight she announces..."Mommy..will the tooth fairy know I want all quarters for my tooth ?!? So, I get to go on a quarter scavenger hunt here shortly..:headache:

Second.. I don't know what kind of influence you all have with the Man upstairs, but it must be good...

Her PFTs were 70% !?!?!?! That is up from 46% less than a month ago. Now admittedly we have been working our butts off with treatments, but that kind of jump in numbers is NOT common! So thank you all!! :grouphug: That also means her Dr is willing for her to be off O2 unless her sats drop below 93, which believe it or not, is a lot different from the 95 we were having to maintain. She is now off the O2 until she gets sick again, pretty much.

I think this calls for a "goofy" Piper pic!
http://i577.photobucket.com/albums/ss211/piperspics/10-14-09056-1.jpg

Yes..that is a googly eye in the middle of her forehead..she thought it was hilarious, which it was!


*What would have been funnier? If I hadn't noticed when this posted that there was a BRA! right in the background of the pic from where I had been folding laundry!! I know you guys like me, but I wouldn't do that to you...although..Jordan does show off his chonies(boxers) all over his PTR!*

jordanyosh
11-17-2009, 10:10 PM
Great news!:thumbsup2

yinyanggirls
11-17-2009, 10:21 PM
First..Piper lost a tooth today..hooray! No more tormenting Mommy by popping it out of its' socket to hang by a thread. It's ironic..I can poke the kid with needles and watch her minor surgeries, but a loose tooth grosses me out! :scared: Then tonight she announces..."Mommy..will the tooth fairy know I want all quarters for my tooth ?!? So, I get to go on a quarter scavenger hunt here shortly..:headache:

The loose teeth gross me out too. I have to make DH pull them, otherwise Phoebe eats hers with her morning cheerios. :sad2: Speaking of which she lost her 8th (last of the front ones) tooth over the weekend. What a coinkydink. We pulled it so we have it for the tooth fairy. In our house the tooth fairy does not necessarily come the night the tooth is lost. Since Phoebe has no use for money she gets a small toy (bouncy ball or something) and the visit tends to coordinate with the the WalMart fairy. :lmao:

I'm happy to hear she's doing so much better. I love her goofy pic. Her chubby cheeks remind me of Phoebe. Slender girl, chubby cheeks. :cutie:

pipersmom
11-17-2009, 10:24 PM
Great news!:thumbsup2

The loose teeth gross me out too. I have to make DH pull them, otherwise Phoebe eats hers with her morning cheerios. :sad2: Speaking of which she lost her 8th (last of the front ones) tooth over the weekend. What a coinkydink. We pulled it so we have it for the tooth fairy. In our house the tooth fairy does not necessarily come the night the tooth is lost. Since Phoebe has no use for money she gets a small toy (bouncy ball or something) and the visit tends to coordinate with the the WalMart fairy. :lmao:

I'm happy to hear she's doing so much better. I love her goofy pic. Her chubby cheeks remind me of Phoebe. Slender girl, chubby cheeks. :cutie:

You guys are waaaaaay too quick!! You'll notice something is now missing from the picture! :rotfl:

yinyanggirls
11-17-2009, 10:33 PM
You guys are waaaaaay too quick!! You'll notice something is now missing from the picture! :rotfl:

I was wondering.....:rotfl2:

maroo
11-17-2009, 10:56 PM
Oh...I am just in tears!!

That is WONDERFUL! Fantastic news!!! That much of a jump up sounds like a God thing if you ask me!

WoW!!!!

We will just keep on praying! :thumbsup2

chrissid7
11-18-2009, 01:31 AM
OMG yall are cracking me up!!!!!!!!!

I cant stand a hanging tooth and I flat out refuse to go near it!! hahahaha the walmart fairy!!!!!!!!!!!! :lmao:

:cheer2: GREAT NEWS 72% SUPER FABULOUS STUPENDOUS FANTASTIC!!!!!:cheer2:


I am sooooo happy for you guys!!!!!!!

I tell alyssa all of the time that if we hit 60 again I will do cartwheels out of the doctors office!!!!!!!:woohoo::cheer2::dance3:

pacrosby
11-18-2009, 02:07 AM
:yay: Yay for good news!!!

ewwwww the tooth thing grosses me out too. Why is it that they all seem to like to gross out their moms with such nastiness?????? Tooth fairy gets all mixed up at our house. Sometimes we think she forgets completely but then, later in the day, we find the quarters under the bed, or in the pillow case or under the mattress :confused3:confused3:confused3

Pamela :santa:

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

pipersmom
11-18-2009, 06:09 PM
I was wondering.....:rotfl2:

It was so bad..I did the whole post, clicked post..and I always look at them after, thank goodness! I saw it right away and immediately went to photobucket to edit it! I had my fingers crossed that no one would be reading yet, but we both know how that turned out! LOL

Oh...I am just in tears!!

That is WONDERFUL! Fantastic news!!! That much of a jump up sounds like a God thing if you ask me!

WoW!!!!

We will just keep on praying! :thumbsup2

Maroo..I completely agree! And thank you. :goodvibes

OMG yall are cracking me up!!!!!!!!!

I cant stand a hanging tooth and I flat out refuse to go near it!! hahahaha the walmart fairy!!!!!!!!!!!! :lmao:

:cheer2: GREAT NEWS 72% SUPER FABULOUS STUPENDOUS FANTASTIC!!!!!:cheer2:


I am sooooo happy for you guys!!!!!!!

I tell alyssa all of the time that if we hit 60 again I will do cartwheels out of the doctors office!!!!!!!:woohoo::cheer2::dance3:

I took Piper to Toys R Us afterward..couldn't spend much, but she LOVES that store, and we might go twice a year since it's an hr away.


:yay: Yay for good news!!!

ewwwww the tooth thing grosses me out too. Why is it that they all seem to like to gross out their moms with such nastiness?????? Tooth fairy gets all mixed up at our house. Sometimes we think she forgets completely but then, later in the day, we find the quarters under the bed, or in the pillow case or under the mattress :confused3:confused3:confused3

Pamela :santa:

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

LOL..Piper would absolutely kill me if the tooth fairy forgot! She was quite excited to show me her $3.oo worth of quarters this morning. I was digging out sofa cushions and burrowing under car seats last night to find them!! I guess I need to be more prepared :goodvibes

MomsOf2boys
11-18-2009, 07:34 PM
I missed the BRA incident so the editing did help. :lmao: But it is funny.

So very happy to hear that prayers are working!!!!!!!! :thumbsup2

pipersmom
11-22-2009, 12:12 AM
I missed the BRA incident so the editing did help. :lmao: But it is funny.

So very happy to hear that prayers are working!!!!!!!! :thumbsup2

In think my mouth dropped open when I saw it hanging out in the background, lol. Thank you for the prayers and good wishes, it's great having another network of people that you know care!

pipersmom
11-22-2009, 12:20 AM
So the surprise package Piper will get on Christmas day is coming together! Our customized maps came in today, as did some pixie dust. My Aunt found her a Mickey & Minnie kissing snowglobe on clearance at JCP..Piper collects snowglobes, so she'll love it! The same day she went to K-Mart and found a huge stuffed Mickey in Christmas regalia..Santa hat, cute scarf, etc. She also sent a postcard type thing she had gotten from Disney with a picture of Alice and the White Rabbit (backs turned like they were walking to the MK) that says "Have we got some important dates for you!" Once you open it there's a front view of them and then a message about coming to Disney, etc. My plan is to paste white paper over their message, and then put my own on it with our trip dates. I don't dare post pics yet in case Piper should see me on the thread, but I will after Christmas. She had also enclosed some home depot Mickey Heads that I'll use with the countdown calendar. Funnily enough, there were no lime green ones, so someone in Bangor must Dis too!! I think just about every other color was there, lol. Now if we could just get some dates, we'd be all set.... :rotfl:

chrissid7
11-22-2009, 12:40 AM
So the surprise package Piper will get on Christmas day is coming together! Our customized maps came in today, as did some pixie dust. My Aunt found her a Mickey & Minnie kissing snowglobe on clearance at JCP..Piper collects snowglobes, so she'll love it! The same day she went to K-Mart and found a huge stuffed Mickey in Christmas regalia..Santa hat, cute scarf, etc. She also sent a postcard type thing she had gotten from Disney with a picture of Alice and the White Rabbit (backs turned like they were walking to the MK) that says "Have we got some important dates for you!" Once you open it there's a front view of them and then a message about coming to Disney, etc. My plan is to paste white paper over their message, and then put my own on it with our trip dates. I don't dare post pics yet in case Piper should see me on the thread, but I will after Christmas. She had also enclosed some home depot Mickey Heads that I'll use with the countdown calendar. Funnily enough, there were no lime green ones, so someone in Bangor must Dis too!! I think just about every other color was there, lol. Now if we could just get some dates, we'd be all set.... :rotfl:

YAY!!!!!!!!! Gotta love progress especially when its something as cool as this!!!
My oldest (shayna) Collects snow globes too!
I love the stuffed mickey idea.... did i mention how excited I am for Piper and her huge surprise! :cheer2:

My sister in laaw picked up the Mickey head paint chips for me today. I told alyssa it was to make a count down for here (club Med). But I actually secretly need her to pick her paint color!

Now lets hear it for dates!!!

StefaniLyn
11-22-2009, 01:07 AM
So the surprise package Piper will get on Christmas day is coming together! Our customized maps came in today, as did some pixie dust. My Aunt found her a Mickey & Minnie kissing snowglobe on clearance at JCP..Piper collects snowglobes, so she'll love it! The same day she went to K-Mart and found a huge stuffed Mickey in Christmas regalia..Santa hat, cute scarf, etc. She also sent a postcard type thing she had gotten from Disney with a picture of Alice and the White Rabbit (backs turned like they were walking to the MK) that says "Have we got some important dates for you!" Once you open it there's a front view of them and then a message about coming to Disney, etc. My plan is to paste white paper over their message, and then put my own on it with our trip dates. I don't dare post pics yet in case Piper should see me on the thread, but I will after Christmas. She had also enclosed some home depot Mickey Heads that I'll use with the countdown calendar. Funnily enough, there were no lime green ones, so someone in Bangor must Dis too!! I think just about every other color was there, lol. Now if we could just get some dates, we'd be all set.... :rotfl:

What a great idea! Piper is giong to have the best Christmas present ever! Here is another idea you could add to it if you are feeling ambitious or bored :rotfl2:. Our first trip was a Christmas gift from Grandpa and Grandma and to surprise our girls I made them this video:
http://www.youtube.com/watch?v=a_AQFjtpEhY
The video was super easy and took me less than 20 minutes to make it using windows movie maker. We then put it into an envelope and it was "delivered" it to our home on Christmas Eve. Here is a video of the girls watching that video and finding out they were going to DISNEYWOLRD!
http://www.youtube.com/user/StefaniLynG#p/u/18/_L67Ym_kNq4
This was the first time ever in her entire life that AJ (then 7) was speechless!

pipersmom
11-22-2009, 08:48 AM
YAY!!!!!!!!! Gotta love progress especially when its something as cool as this!!!
My oldest (shayna) Collects snow globes too!
I love the stuffed mickey idea.... did i mention how excited I am for Piper and her huge surprise! :cheer2:

My sister in laaw picked up the Mickey head paint chips for me today. I told alyssa it was to make a count down for here (club Med). But I actually secretly need her to pick her paint color!

Now lets hear it for dates!!!

Ohh..I want to hear about what color she picks for her room! Between the surprise of the dates, and the fact that my mom got her a Wii..I'm afraid she's either going to pee in her pants or pass out, one. LOL

What a great idea! Piper is giong to have the best Christmas present ever! Here is another idea you could add to it if you are feeling ambitious or bored :rotfl2:. Our first trip was a Christmas gift from Grandpa and Grandma and to surprise our girls I made them this video:
http://www.youtube.com/watch?v=a_AQFjtpEhY
The video was super easy and took me less than 20 minutes to make it using windows movie maker. We then put it into an envelope and it was "delivered" it to our home on Christmas Eve. Here is a video of the girls watching that video and finding out they were going to DISNEYWOLRD!
http://www.youtube.com/user/StefaniLynG#p/u/18/_L67Ym_kNq4
This was the first time ever in her entire life that AJ (then 7) was speechless!

Good morning, Stefani! I will try to watch the video on you tube, but I'm on dial-up, and normally the video won't even load (love slow connections). Definitely going to try to borrow a cam though, to at least catch her opening the package!

Momofwishkid
11-22-2009, 01:03 PM
She is going to be so surprised! Gavin also collects snow globes. The last time I was at Walgreens they had some big ones that had mickey, tiger and Im pretty sure one of the princesses in their christmas outfits for $12 Im thinking about getting him one for Christmas but honestly it's pretty big and his dresser is getting full. :) Im surprised to see 2 others that collect them!

pipersmom
11-22-2009, 08:14 PM
So funny all the kids collecting snowglobes! Piper's only come out at the appropriate holidays, right now we just don't have room to display them all the time. Maybe when she gets older. I noticed wal-mart is going to have a bunch of pj's on black friday for $3 a pair (disney themes)..I haven't decided if I'm going to brave it or not! LOL

All7OfUs
11-22-2009, 11:49 PM
Everything does sound like it's coming together very nicely!!! I know she will love the snowglobe and huh?? What's this? No lime green Mickey heads? Now that's a strange one. You need to get to know your neighbors- maybe you DO have another DIS-er nearby!

pipersmom
11-23-2009, 07:14 AM
My Aunt actually lives in Maine, and we're in VA. She's always been very good to us. I haven't looked for them around here just because the nearest home depot is about an hr away. Maybe while Piper is gone I can do that :)

maroo
11-23-2009, 10:00 AM
Oh! I just can't wait to hear about her surprise!!

I hope you guys set up a video camera to catch it! Priceless!

pipersmom
11-25-2009, 10:56 PM
Oh! I just can't wait to hear about her surprise!!

I hope you guys set up a video camera to catch it! Priceless!

I know..it's killing me and we still have a month to go! I'm going to do my best to borrow a cam!

pipersmom
11-25-2009, 11:12 PM
I got a call from MAW this morning, asking me to have my mom sign all the ppwk I had signed so she can go on the trip with us! Which means she's definitely approved to go. (I asked to make sure I was understanding correctly, lol) So Gram is now officially a part of the cast..hooray. :banana::banana: Piper was very excited, and I was as well, because one of the only things I was worried about was losing patience with her at some point in the trip since it's always just the two of us without any buffer. I think having another adult along will help.

I think a lot of you know that Piper is at her Dad's for Thanksgiving. I drove her to WVa today to meet him halfway. I had asked him three weeks ago to send me a copy of his license for MAW and never received it. Sooo..to ensure the ppwk got signed and returned, I had them fax me a copy of it all, and yesterday called and asked him again, to bring a copy of his license with him today when he met us. Needless to say, he did not bring a copy of his license...sooooo..I made him come inside with me and the folks at the friendly neighborhood fast food joint took it into their office and made a copy for me. :rolleyes1 So now allllll the paperwork is complete, will be submitted on Friday..and we can finally get some dates!!! Woohooo..I cannot state in words how relieved I feel. I won't say too much more, other than I just don't understand. :confused3

So I have the next 3.5 days to myself..I plan on getting the countdown calendar made (to the extent that I can), working on the invitation some, and hopefully getting my Christmas shopping done for her! On that note, I hope everyone has a wonderful Thanksgiving. :grouphug:

jordanyosh
11-25-2009, 11:17 PM
:banana::banana::banana:

:woohoo::woohoo::woohoo:

Nice to have company on the trip as well a bit of help.....:thumbsup2

Is it nice to have the time to yourself?

pipersmom
11-25-2009, 11:23 PM
:banana::banana::banana:

:woohoo::woohoo::woohoo:

Nice to have company on the trip as well a bit of help.....:thumbsup2

Is it nice to have the time to yourself?

I'm always really conflicted about the time to myself..I do take advantage of it thoroughly, this is the first time I have not had Piper with me for more than a school day since the end of August. I also worry a lot though, that she's not getting what she needs med-wise (it's always 50-50 there), which keeps me from enjoying it somewhat? And then the general guilt, lol. I do love being able to sleep in past 7am (she's an early riser) and being able to go do things without worrying about missing her treatment times! Ohh..and having the tv to myself..and the car radio..:rotfl: Maybe I spoil her a bit too much with those types of things. :rolleyes1

jordanyosh
11-25-2009, 11:29 PM
I'm always really conflicted about the time to myself..I do take advantage of it thoroughly, this is the first time I have not had Piper with me for more than a school day since the end of August. I also worry a lot though, that she's not getting what she needs med-wise (it's always 50-50 there), which keeps me from enjoying it somewhat? And then the general guilt, lol. I do love being able to sleep in past 7am (she's an early riser) and being able to go do things without worrying about missing her treatment times! Ohh..and having the tv to myself..and the car radio..:rotfl: Maybe I spoil her a bit too much with those types of things. :rolleyes1

enjoy your much deserved down time!

sleeping in is the BEST isn't it!

pipersmom
11-25-2009, 11:35 PM
enjoy your much deserved down time!

sleeping in is the BEST isn't it!

I don't know if I should admit this in type..but PP (pre-Piper) I had been known to sleep until 11-12 on weekends. In general I am just not much of a morning person. She isn't either though, even though she wakes up at the crack of dawn ...we usually spend the first hour of the morning grunting and growling at each other..:laughing:

jordanyosh
11-25-2009, 11:38 PM
I don't know if I should admit this in type..but PP (pre-Piper) I had been known to sleep until 11-12 on weekends. In general I am just not much of a morning person. She isn't either though, even though she wakes up at the crack of dawn ...we usually spend the first hour of the morning grunting and growling at each other..:laughing:

No shame there. I'd sleep that late if I could. I think I've slept until 10am recently......

pipersmom
11-25-2009, 11:42 PM
No shame there. I'd sleep that late if I could. I think I've slept until 10am recently......

All right..I'm off for bed, hopefully to sleep until at least 9..which shouldn't be a problem with the 5 hrs of driving today! Sleep well when you get there, Jordan!

jordanyosh
11-25-2009, 11:51 PM
All right..I'm off for bed, hopefully to sleep until at least 9..which shouldn't be a problem with the 5 hrs of driving today! Sleep well when you get there, Jordan!

Sleep well!

StefaniLyn
11-26-2009, 12:01 AM
I got a call from MAW this morning, asking me to have my mom sign all the ppwk I had signed so she can go on the trip with us! Which means she's definitely approved to go. (I asked to make sure I was understanding correctly, lol) So Gram is now officially a part of the cast..hooray. :banana::banana: Piper was very excited, and I was as well, because one of the only things I was worried about was losing patience with her at some point in the trip since it's always just the two of us without any buffer. I think having another adult along will help.

I think a lot of you know that Piper is at her Dad's for Thanksgiving. I drove her to WVa today to meet him halfway. I had asked him three weeks ago to send me a copy of his license for MAW and never received it. Sooo..to ensure the ppwk got signed and returned, I had them fax me a copy of it all, and yesterday called and asked him again, to bring a copy of his license with him today when he met us. Needless to say, he did not bring a copy of his license...sooooo..I made him come inside with me and the folks at the friendly neighborhood fast food joint took it into their office and made a copy for me. :rolleyes1 So now allllll the paperwork is complete, will be submitted on Friday..and we can finally get some dates!!! Woohooo..I cannot state in words how relieved I feel. I won't say too much more, other than I just don't understand. :confused3

So I have the next 3.5 days to myself..I plan on getting the countdown calendar made (to the extent that I can), working on the invitation some, and hopefully getting my Christmas shopping done for her! On that note, I hope everyone has a wonderful Thanksgiving. :grouphug:

I'm so happy to hear that Grandma is going on the trip with you! We are also bringing grandma along on our trip! Did you need Dad's licence because he is going on the trip too, or did he just need to sign off on it? How nice of the fast food people to make a copy for you.

I hope you aren't too lonely on Thanksgiving. I wish you lived closer - I'd have you over to my house!

chrissid7
11-26-2009, 12:07 AM
You go girl is all I can say lol.... take what ya need right. Tonight I am Thankful for the fast food office with a copier!!! I am so happy that your mom is getting to go with you... it will be nice I think for all of you. :cool1: Sometimes you really do need that buffer and Disney is no different, kids get tired, moms are sleep deprived and you want to make it great, I get it trust me.

I LOVE LOVE SLEEPING IN WHEN I CAN! Dont feel guilty at all you are doing everything right and you deserve breathing time. Take a long hot bath and dream disney lol! :wizard:

Everything is becoming so final and I am so excited for you and Piper. Alyssa asked me earlier how she was doing and told me when I get back on to Wish you both Happy Thanksgiving. Alyssa is such a worrier and her brain is a steel trap, not to mention she cares so deeply about people.

We are looking forward to a great dinner at Club Med. We love our "food lady" Monica. She is an amazing woman that really gives Alyssa some special attention and word is on the floor that we may start requesting to be admitted on Thanksgiving from now on because she puts on a grand feast for the families and patients, and the nurses and staff. Everyone up here have been raving about how fancy and over the top she goes with decor and the food. Our security guard insisted on working tomorrw so that he could be here for it! Monica stopped me in the hallway yesterday to go over the menu and make sure she could eat some things off of the menu. We were happy to find a lot of stuff. She said " I gotta make sure my baby gets to eat a great meal too". (im going to copy this part to my ptr so that I dont have to type it again lol sorry if you have to see it twice, im lazy and tired tonight)

yinyanggirls
11-26-2009, 02:52 AM
Woohoo for paperwork being done! Can't wait to hear your dates!

DH is working tomorrow (around noon til after midnight) so we are not doing T-giving. I'd offer to chat with you all day, but I will be trying to entertain two bored girls. I'm thinking the park (it's 75 here) and then Chinese take-out...

dawnbu40
11-26-2009, 04:31 AM
That's wonderful that grandma gets to go with you two!

Happy Thanksgiving!

pipersmom
11-26-2009, 07:44 AM
I'm so happy to hear that Grandma is going on the trip with you! We are also bringing grandma along on our trip! Did you need Dad's licence because he is going on the trip too, or did he just need to sign off on it? How nice of the fast food people to make a copy for you.

I hope you aren't too lonely on Thanksgiving. I wish you lived closer - I'd have you over to my house!

Good morning! I'm not real sure why they needed a copy of his driver's license. Maybe to ensure that he really signed the papers himself? :confused3 He is not going with us..I had steeled myself for Piper to want him to go, and she never so much as mentioned it. He has a lot of health problems, so maybe she knew he couldn't handle it?

Today should be fine, I'll go into my Mom's a bit later and we'll hang out for the day, check the BF ads, etc. Thank you for the kind thoughts though. We're going to do Thanksgiving on Sunday once Piper is back. :goodvibes


You go girl is all I can say lol.... take what ya need right. Tonight I am Thankful for the fast food office with a copier!!! I am so happy that your mom is getting to go with you... it will be nice I think for all of you. :cool1: Sometimes you really do need that buffer and Disney is no different, kids get tired, moms are sleep deprived and you want to make it great, I get it trust me.

I LOVE LOVE SLEEPING IN WHEN I CAN! Dont feel guilty at all you are doing everything right and you deserve breathing time. Take a long hot bath and dream disney lol! :wizard:

Everything is becoming so final and I am so excited for you and Piper. Alyssa asked me earlier how she was doing and told me when I get back on to Wish you both Happy Thanksgiving. Alyssa is such a worrier and her brain is a steel trap, not to mention she cares so deeply about people.

We are looking forward to a great dinner at Club Med. We love our "food lady" Monica. She is an amazing woman that really gives Alyssa some special attention and word is on the floor that we may start requesting to be admitted on Thanksgiving from now on because she puts on a grand feast for the families and patients, and the nurses and staff. Everyone up here have been raving about how fancy and over the top she goes with decor and the food. Our security guard insisted on working tomorrw so that he could be here for it! Monica stopped me in the hallway yesterday to go over the menu and make sure she could eat some things off of the menu. We were happy to find a lot of stuff. She said " I gotta make sure my baby gets to eat a great meal too". (im going to copy this part to my ptr so that I dont have to type it again lol sorry if you have to see it twice, im lazy and tired tonight)

I think it will be nice to have her with us as well, and a bit of a "thank you" to her as well. When I first separated, we lived with her for two years, in her small, 2 bedroom-kitchen-living room-bathroom (picture a square) apartment!

I'm glad they're doing a special Thanksgiving dinner for you guys! We've been in over Thanksgiving before and they did the same thing, but I was afraid to mention to you guys before because I didn't know if MCV did things like that or not! :love: Tell Alyssa we hope she has a great Thanksgiving as well! We actually called the gift shop there the other day hoping to send her a couple balloons, but they wanted a $35!!! minimum purchase to do anything by phone. You should be getting mail next week :)
Woohoo for paperwork being done! Can't wait to hear your dates!

DH is working tomorrow (around noon til after midnight) so we are not doing T-giving. I'd offer to chat with you all day, but I will be trying to entertain two bored girls. I'm thinking the park (it's 75 here) and then Chinese take-out...

Aww, thanks Melissa..Chinese sounds great to me too, always makes me think of "A Christmas Story" around the holidays, lol. Ohh..I would love 75! We're supposed to hit 55 today I think! Have a great day with your girls!


That's wonderful that grandma gets to go with you two!

Happy Thanksgiving!

Thank you, Dawn..as I mentioned to Chrissi above, she's done (and does) a lot for us, so I'm glad we're able to do this for her as well.

Happy Thanksgiving!!

chrissid7
11-26-2009, 11:04 AM
You are so sweet to have even looked into that.. jeeeze $35 dont they realize there is a dollar tree right up the road?? lol. And yes I would suggest that if you had pixie dus to send that you just send it to the house because i will just bring it here for her. Enjoy your day.... I was just excited to be able to sit on my butt today and actually watch the parade.

All7OfUs
11-26-2009, 12:25 PM
Just stopping by to wish you and Piper and super Happy Thanksgiving. I know she's not with you, but hope you both have a happy one anyways, wherever you are!

Blessings!

Liesa

maroo
11-30-2009, 10:14 AM
How are you guys doing? :)

pipersmom
11-30-2009, 10:26 AM
Just stopping by to wish you and Piper and super Happy Thanksgiving. I know she's not with you, but hope you both have a happy one anyways, wherever you are!

Blessings!

Liesa

Thank you, Liesa! I think we both did enjoy the holiday, Piper in particular, but more on that in a little further down.

How are you guys doing? :)

We're doing good, Maroo, thank you..going to update in the next post!

You are so sweet to have even looked into that.. jeeeze $35 dont they realize there is a dollar tree right up the road?? lol. And yes I would suggest that if you had pixie dus to send that you just send it to the house because i will just bring it here for her. Enjoy your day.... I was just excited to be able to sit on my butt today and actually watch the parade.

Chrissi, we will send it to the house, I didn't get a lot done while Piper is gone, but we'll get it sent out this week.

pipersmom
11-30-2009, 10:43 AM
Good morning, all! Just a mini-update. Piper is home, hooray! The traffic yesterday was AWFUL! I-81 was the worst, you're cruising along at 70, and suddenly you're in a bottleneck going 10mph. Only to find out....that's right...there was a minor fender-bender 30 min ago and everyone thinks they need to look!!! That drives me absolutely craaaaaaaazy! :headache: Luckily only about 50 min of the drive is on 81, then I hit the smaller roads. I don't mind bumper to bumper traffic as long as it's moving over 50, but the bottlenecks..ugh.

Piper came home very happy, because while she was at her Dad's they had Christmas. :confused: He's supposed to pick her up Dec. 26th for a week, and apparently decided it isn't worth doing that. So the good news is..she's home until spring break!! Hooray! She slept until 9:30 this morning, which is typical when she gets back. It prob doesn't help that I let her stay up and watch "A Dog Named Christmas" with me last night. I'm a sucker for the Hallmark movies, and I think we both enjoyed the cuddle-time.

I spent a lot of time with my Mom while she was gone, we're very close, and frankly, being in my empty house depresses me a bit. So Fri we actually went shopping, which is something we never do. I was able to get done with my Christmas shopping for Piper, score! Now I don't have to worry about shopping for her when she's with me...well..except for a couple more stocking stuffers, probably. We were also able to pick up a few more little things for her Advent calendar. It's one of the large wooden ones with drawers (shaped like a lighthouse) and this is the first year we've used it. We'll also put up a playmobil advent calendar (we collect them and have about 9..normally we would put up the new one from this year, and one older one). They actually did not come out with a new one this year, which kind of disappointed me. I also found some clearance stuff at Peebles for the trip..for me..lol. A couple pair of capris and 3 nice short sleeved cotton "hippie-type" shirts for less than $50 between the clearance and a 15% off coupon. I can't believe tomorrow is Dec. 1. :scared1: The time just goes by so quickly.

Hope everyone has a wonderful day!

dawnbu40
11-30-2009, 11:01 AM
Good to hear that Piper had a nice weekend and that you got to do something for yourself while she was away. :)

All7OfUs
11-30-2009, 11:14 AM
So great you both enjoyed the cuddle time! Everyone needs some of that once in a while!

Glad you get Piper until Spring break, although, I know she may miss her dad until then.

I"m impressed, you're already decorating. I haven't even thought about it yet. It's always so much work. Lovely, but a lot of work.

I just bought my trip capris too! I"m feeling some common wavelength going here.

jordanyosh
11-30-2009, 11:23 AM
Good morning, all! Just a mini-update. Piper is home, hooray! The traffic yesterday was AWFUL! I-81 was the worst, you're cruising along at 70, and suddenly you're in a bottleneck going 10mph. Only to find out....that's right...there was a minor fender-bender 30 min ago and everyone thinks they need to look!!! That drives me absolutely craaaaaaaazy! :headache: Luckily only about 50 min of the drive is on 81, then I hit the smaller roads. I don't mind bumper to bumper traffic as long as it's moving over 50, but the bottlenecks..ugh.

Welcome to the life of someone living in Southern Cal. The home of the worst traffic in the nation.

I'm glad you had your mom to fill in the gap.

I'm also glad that you got alot accomplished.

Not so happy about the ex not taking Piper over Christmas, but you know what? He was thoughtful enough to celebrate Xmas with her.

Momofwishkid
11-30-2009, 12:29 PM
Im glad Piper's home, did you get to do a Thanksgiving dinner with her over the weekend? :banana: for getting your shopping done!

pipersmom
11-30-2009, 03:12 PM
Good to hear that Piper had a nice weekend and that you got to do something for yourself while she was away. :)

Thank you, Dawn. :) I was a bit stressed about getting the Christmas shopping done for her since she's doing homebound, so it's good knowing it's done.


So great you both enjoyed the cuddle time! Everyone needs some of that once in a while!

Glad you get Piper until Spring break, although, I know she may miss her dad until then.

I"m impressed, you're already decorating. I haven't even thought about it yet. It's always so much work. Lovely, but a lot of work.

I just bought my trip capris too! I"m feeling some common wavelength going here.

The advent calendars are about the sum of my decorating so far, lol, because they start the 1st day of December!


Welcome to the life of someone living in Southern Cal. The home of the worst traffic in the nation.

I'm glad you had your mom to fill in the gap.

I'm also glad that you got alot accomplished.

Not so happy about the ex not taking Piper over Christmas, but you know what? He was thoughtful enough to celebrate Xmas with her.

I couldn't do the metropolitan thing again, Cincy was enough for me! The town we're outside of has a total of about 6 stoplights..traffic is rarely an issue, lol. And you're right, it is a good thing they did Christmas. I don't let Piper see any negativity coming from me as far as he's concerned, my parents' divorce was very bitter, and I would never want her to deal with that like I had to. I keep my thoughts in my head for the most part, though it is nice to vent sometimes. It is what it is, sometimes I have to remind myself of that.

pipersmom
11-30-2009, 03:15 PM
Im glad Piper's home, did you get to do a Thanksgiving dinner with her over the weekend? :banana: for getting your shopping done!

We had Thanksgiving dinner Sun night. :goodvibes When she's not here like that we always postpone, even at Christmas, we'll all get together and open a few things, then save the rest for when she's with us.

GreatBiscuit
11-30-2009, 03:35 PM
Horray for the extended cast! :cool1: And that you are able to make the most of a not so nifty situation. Hope you have a great Christmas!

pacrosby
11-30-2009, 11:28 PM
WOW So much has been going on in my extended absence! Hooray for the extended cast (gotta love those moms....I WISH we could take mine:love:), and the paperwork, and the homecoming, and the christmas shopping........

I laughed when you wrote about sleeping in 'til 11 or 12. Sounds perfect to me. I am NOT a morning person. Go to the dictionary and look under 'night owl'? There I shall be!

Pamela:santa:

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

jordanyosh
11-30-2009, 11:36 PM
I couldn't do the metropolitan thing again, Cincy was enough for me! The town we're outside of has a total of about 6 stoplights..traffic is rarely an issue, lol. And you're right, it is a good thing they did Christmas. I don't let Piper see any negativity coming from me as far as he's concerned, my parents' divorce was very bitter, and I would never want her to deal with that like I had to. I keep my thoughts in my head for the most part, though it is nice to vent sometimes. It is what it is, sometimes I have to remind myself of that.

That's small town.

I'm glad you have a good attitude (mostly;)) about your ex.

StefaniLyn
12-01-2009, 01:59 AM
I'm glad Piper made it home safely. Too bad dad bailed on the after-Christmas visit. It's so wonderful that you maintain a positive attitude towards him despite it all. That truly is so important for Piper!

yinyanggirls
12-01-2009, 02:25 AM
Welcome to the life of someone living in Southern Cal. The home of the worst traffic in the nation.


Thank you Jordan, for reminding me what I am NOT missing! DH and I both grew up in OC and every time we go back it takes a little adjusting. We live in a small town also (not by choice, it's a job thing) and I had to stop and count, but we just so happen to have 6 lights as well. We're getting another one this week and it's a good thing. We have snowbirds and the roads actually do get busy in the winter. Busy meaning, you have to wait for like 6 cars to go by before you can turn onto the hwy. :rotfl2:



I also found some clearance stuff at Peebles for the trip..for me..lol.


Hurray for shopping! I love shopping when I find good deals.


I laughed when you wrote about sleeping in 'til 11 or 12. Sounds perfect to me. I am NOT a morning person. Go to the dictionary and look under 'night owl'? There I shall be!


Pamela, you are not the only one! There seam to be several on the board. My family growing up used to fight over who had to wake me up when we were on vacation. I have really had to adjust since the kids came along, not happily I might add. I think I survived my full time jobs by having weekends off. Full time mom does not get such privileges. :sad1: (You know I wouldn't trade 'em though)

maroo
12-01-2009, 09:16 AM
I am glad she is home!

And so glad she doesn't have to go back till after Spring Break. :rolleyes:

Awesome getting all of that Christmas Shopping done!

And I can't believe it is December 1st either! I will be in DISNEY - today - two weeks from now! :eek:

pipersmom
12-02-2009, 07:53 AM
Horray for the extended cast! :cool1: And that you are able to make the most of a not so nifty situation. Hope you have a great Christmas!

WOW So much has been going on in my extended absence! Hooray for the extended cast (gotta love those moms....I WISH we could take mine:love:), and the paperwork, and the homecoming, and the christmas shopping........

I laughed when you wrote about sleeping in 'til 11 or 12. Sounds perfect to me. I am NOT a morning person. Go to the dictionary and look under 'night owl'? There I shall be!

Pamela:santa:

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

That's small town.

I'm glad you have a good attitude (mostly;)) about your ex.

I'm glad Piper made it home safely. Too bad dad bailed on the after-Christmas visit. It's so wonderful that you maintain a positive attitude towards him despite it all. That truly is so important for Piper!

Thank you all :) Ironically enough, while Piper was gone I was up by 8 and unable to go back to sleep..but she (and I) slept in until about 9:30 Mon morning! That doesn't happen very often with her, I think we both enjoyed it.

pipersmom
12-02-2009, 08:01 AM
Thank you Jordan, for reminding me what I am NOT missing! DH and I both grew up in OC and every time we go back it takes a little adjusting. We live in a small town also (not by choice, it's a job thing) and I had to stop and count, but we just so happen to have 6 lights as well. We're getting another one this week and it's a good thing. We have snowbirds and the roads actually do get busy in the winter. Busy meaning, you have to wait for like 6 cars to go by before you can turn onto the hwy. :rotfl2:




Hurray for shopping! I love shopping when I find good deals.



Pamela, you are not the only one! There seam to be several on the board. My family growing up used to fight over who had to wake me up when we were on vacation. I have really had to adjust since the kids came along, not happily I might add. I think I survived my full time jobs by having weekends off. Full time mom does not get such privileges. :sad1: (You know I wouldn't trade 'em though)

I love being back in a small town until I want to go to a movie or something like that, we have to drive at least 30 min to get to one, or Target, or a mall! I like to shop too when I know good sales are on, and even to window shop somewhere new, other than that, not much of a shopper. I think we're going to have to set an alarm while we're on her trip to make sure we're up and at it early enough each morning!


I am glad she is home!

And so glad she doesn't have to go back till after Spring Break. :rolleyes:

Awesome getting all of that Christmas Shopping done!

And I can't believe it is December 1st either! I will be in DISNEY - today - two weeks from now! :eek:

Woohooooo for two weeks! I'm glad she's home too, she inevitably comes back sick, which has happened again this time, more cough, runny nose.:sick: I'm hoping we'll be able to get rid of it before it escalates.

kdzbear
12-02-2009, 08:11 AM
I am glad that Piper is back home again! I think I am caught up again! :grouphug:

pooh'smate
12-03-2009, 12:03 AM
I came over from Jordan's ptr. Your dd is so cute. Now I am off to read.

pipersmom
12-03-2009, 12:08 AM
I am glad that Piper is back home again! I think I am caught up again! :grouphug:

:grouphug: Welcome home! I'm glad she's home too, now I just need to get her cleared up again.


I came over from Jordan's ptr. Your dd is so cute. Now I am off to read.

:welcome: Thank you for coming over..I was giving him a hard time..he's such a great writer it's easy to see why his PTR moves along so quickly! Hope you enjoy the reading :)

jordanyosh
12-03-2009, 12:09 AM
Thank you Jordan, for reminding me what I am NOT missing! DH and I both grew up in OC and every time we go back it takes a little adjusting. We live in a small town also (not by choice, it's a job thing) and I had to stop and count, but we just so happen to have 6 lights as well. We're getting another one this week and it's a good thing. We have snowbirds and the roads actually do get busy in the winter. Busy meaning, you have to wait for like 6 cars to go by before you can turn onto the hwy. :rotfl2:


The traffic is so bad now even the streets are bad. Euclid, Brookhurst, Beach, Magnolia...all bad!

pipersmom
12-03-2009, 12:13 AM
The traffic is so bad now even the streets are bad. Euclid, Brookhurst, Beach, Magnolia...all bad!

-crossing off SoCa as a place to visit and hoping all this bad traffic talk doesn't jinx my next road trip-

jordanyosh
12-03-2009, 12:16 AM
-crossing off SoCa as a place to visit and hoping all this bad traffic talk doesn't jinx my next road trip-

you just need to know when to travel to avoid traffic. it's like a cat and mouse game.

yinyanggirls
12-03-2009, 12:40 AM
The traffic is so bad now even the streets are bad. Euclid, Brookhurst, Beach, Magnolia...all bad!

No escape routes anymore? I've lived on Euclid and Brookhurst, worked on Beach. I used to take MacArthur from Irvine to HB to avoid the freeways. I guess metro and small town have one thing in common - it takes at least 30 minutes to get anywhere. :rotfl2:
My SIL and family moved to WA because they couldn't afford to live any closer than Chino Hills to their jobs in Lakewood and Whittier. It's so hard for people to make ends meet there.

Amanda, growing up in CA we used to think our out-of-state relatives were so funny because they were terrified to drive on the freeways. I have a little more compassion now that I've been away a while. ;)

pooh'smate
12-03-2009, 01:14 AM
So the surprise package Piper will get on Christmas day is coming together! Our customized maps came in today, as did some pixie dust. My Aunt found her a Mickey & Minnie kissing snowglobe on clearance at JCP..Piper collects snowglobes, so she'll love it! The same day she went to K-Mart and found a huge stuffed Mickey in Christmas regalia..Santa hat, cute scarf, etc. She also sent a postcard type thing she had gotten from Disney with a picture of Alice and the White Rabbit (backs turned like they were walking to the MK) that says "Have we got some important dates for you!" Once you open it there's a front view of them and then a message about coming to Disney, etc. My plan is to paste white paper over their message, and then put my own on it with our trip dates. I don't dare post pics yet in case Piper should see me on the thread, but I will after Christmas. She had also enclosed some home depot Mickey Heads that I'll use with the countdown calendar. Funnily enough, there were no lime green ones, so someone in Bangor must Dis too!! I think just about every other color was there, lol. Now if we could just get some dates, we'd be all set.... :rotfl:

My Aunt actually lives in Maine, and we're in VA. She's always been very good to us. I haven't looked for them around here just because the nearest home depot is about an hr away. Maybe while Piper is gone I can do that :)



I was going to ask you if your were talking about Bangor, Me. I am from Maine and grew up exactly an hour away from Bangor in a town called Skowhegan. Then I finished reading the page and I see your aunt is from Maine. Ok now I am going back to read some more.

All7OfUs
12-03-2009, 01:17 AM
Ahhh, yes, the fond memories of commuting to work at DLR... I-5; sitting there forE.V.E.R listening to KROQ; wondering if I'd get to costuming in time to change.... I was glad to leave.

yinyanggirls
12-03-2009, 01:39 AM
Ahhh, yes, the fond memories of commuting to work at DLR... I-5; sitting there forE.V.E.R listening to KROQ; wondering if I'd get to costuming in time to change.... I was glad to leave.

Oh my gosh! KROQ! I won my first concert tickets from them. De Peche Mode. :love:

The freeways have always been parking lots at rush hour. Now they are just packed all the time. We will be approaching OC at 2 am and be surrounded by vehicles in all 8 lanes. Not stopped at 2am, but give it time....

How fun (to work at DL, not the traffic). Which character were you?

jordanyosh
12-03-2009, 01:44 AM
No escape routes anymore? I've lived on Euclid and Brookhurst, worked on Beach. I used to take MacArthur from Irvine to HB to avoid the freeways. I guess metro and small town have one thing in common - it takes at least 30 minutes to get anywhere. :rotfl2:
My SIL and family moved to WA because they couldn't afford to live any closer than Chino Hills to their jobs in Lakewood and Whittier. It's so hard for people to make ends meet there.

Amanda, growing up in CA we used to think our out-of-state relatives were so funny because they were terrified to drive on the freeways. I have a little more compassion now that I've been away a while. ;)

Ahhh, yes, the fond memories of commuting to work at DLR... I-5; sitting there forE.V.E.R listening to KROQ; wondering if I'd get to costuming in time to change.... I was glad to leave.

They're widening I-5 between the 91 and the 605, but right now it makes traffic worse so everyone is taking the 91 and that's bad too and the 405...:headache::headache:.

yinyanggirls
12-03-2009, 01:49 AM
They're widening I-5 between the 91 and the 605, but right now it makes traffic worse so everyone is taking the 91 and that's bad too and the 405...:headache::headache:.

The 91 as an alternate route?!?!??!?!?!?!?!?!??! That was the worst one of all. Giant parking lot. BTW, I love how I slip right back into the "the" talk. In other states they don't say "the #" (or "the I-5") they just say "#", like "I-5". Weird huh?

pipersmom
12-03-2009, 06:29 AM
No escape routes anymore? I've lived on Euclid and Brookhurst, worked on Beach. I used to take MacArthur from Irvine to HB to avoid the freeways. I guess metro and small town have one thing in common - it takes at least 30 minutes to get anywhere. :rotfl2:
My SIL and family moved to WA because they couldn't afford to live any closer than Chino Hills to their jobs in Lakewood and Whittier. It's so hard for people to make ends meet there.

Amanda, growing up in CA we used to think our out-of-state relatives were so funny because they were terrified to drive on the freeways. I have a little more compassion now that I've been away a while. ;)

I used to be scared of freeways, but I got rid of that driving from VA to Cincy, and living right outside of Cincy. Once you've driven a 25ft Uhaul 500 miles, anything else is cake, lol. The first time as an adult that I was in major traffic was with my college roommate..we were at a stoplight right outside DC..maybe 20-30 cars at the light..and out of my mouth pops.."So this is a traffic jam". The poor girl started laughing so hard if the light had turned green at that moment I don't think she could have driven anywhere!! :rotfl2:

I was going to ask you if your were talking about Bangor, Me. I am from Maine and grew up exactly an hour away from Bangor in a town called Skowhegan. Then I finished reading the page and I see your aunt is from Maine. Ok now I am going back to read some more.

My mom's side of the family is all from Greenville! We used to spend every summer on the lake, and I have many fond memories of the Skowhegan Fair :)

yinyanggirls
12-03-2009, 09:02 AM
I used to be scared of freeways, but I got rid of that driving from VA to Cincy, and living right outside of Cincy. Once you've driven a 25ft Uhaul 500 miles, anything else is cake, lol. The first time as an adult that I was in major traffic was with my college roommate..we were at a stoplight right outside DC..maybe 20-30 cars at the light..and out of my mouth pops.."So this is a traffic jam". The poor girl started laughing so hard if the light had turned green at that moment I don't think she could have driven anywhere!! :rotfl2:


That IS funny!:lmao: I had a similar experience away at college. A dormie and I had returned at the same time from the nearest city and she commented on the horrible traffic. I laughed at her. I couldn't help myself. I believe she was from Virginia....

jordanyosh
12-03-2009, 10:42 AM
The 91 as an alternate route?!?!??!?!?!?!?!?!??! That was the worst one of all. Giant parking lot. BTW, I love how I slip right back into the "the" talk. In other states they don't say "the #" (or "the I-5") they just say "#", like "I-5". Weird huh?

That is kind weird?

Yeah, the 91 was already bad now it's REALLY bad--anytime of day almost.

the 210 stinks too.

pipersmom
12-03-2009, 09:59 PM
Okay, so some of you may have noticed you have yet to see a picture of the author in the PTR. Yes..I am one of "those" people. I detest having my picture taken, have never liked it, not sure why. So today I went to get my hair cut..chopped off about 11 in..went from 3/4 of the way down my back, to a No. 2 guard on the clippers on the back of my neck! I love it..so we get home, I ask Piper if she wants to take a pic of mom's new haircut. She was more than willing...unfortunately, every one she took came out like she was taking pics out of a car window going 60mph..:lmao:. So, no pics yet, but the urge might strike me again before we leave! If not, there will be plenty of pics in our TR, I'm sure..I'm actually looking forward to having pics of us together, which surprises even me!

pooh'smate
12-03-2009, 10:32 PM
My mom's side of the family is all from Greenville! We used to spend every summer on the lake, and I have many fond memories of the Skowhegan Fair :)

I lived in Greenville for about a year and then my dad got transferred to Skowhegan. I miss the fair. They don't have fairs like that out here. We did spend alot of time at the lake as my dad's headquarters were still there. He was a forest ranger. Did you ever watch the air show in Greenville?

yinyanggirls
12-03-2009, 10:35 PM
Okay, so some of you may have noticed you have yet to see a picture of the author in the PTR. Yes..I am one of "those" people. I detest having my picture taken, have never liked it, not sure why. So today I went to get my hair cut..chopped off about 11 in..went from 3/4 of the way down my back, to a No. 2 guard on the clippers on the back of my neck! I love it..so we get home, I ask Piper if she wants to take a pic of mom's new haircut. She was more than willing...unfortunately, every one she took came out like she was taking pics out of a car window going 60mph..:lmao:. So, no pics yet, but the urge might strike me again before we leave! If not, there will be plenty of pics in our TR, I'm sure..I'm actually looking forward to having pics of us together, which surprises even me!

Oh, you're one of those people!? I see how it is. ;) Wow, on the 11 inches. Courageous! I'm glad you love it. I used to hate pics of me then they got worse and I thought, I wish I had more pics of be "back when" so I finally just gave up. I'm still not in many because I'm usually taking them, but I don't protest or hide either. Let Piper practice on you more, and then maybe you'll get more comfortable before your trip. :cutie:

pipersmom
12-03-2009, 10:52 PM
I lived in Greenville for about a year and then my dad got transferred to Skowhegan. I miss the fair. They don't have fairs like that out here. We did spend alot of time at the lake as my dad's headquarters were still there. He was a forest ranger. Did you ever watch the air show in Greenville?

Yes, we went to the fly-in almost every summer when I had time with my Dad (he was from there also & folks were divorced). Piper and I were there summer '08, but not for the fly-in, unfortunately. I would like her to be able to see one. Though I have made sure she's gotten grapenut ice cream from the dairy bar! Do you remember the fries there with the little wooden fork?


Oh, you're one of those people!? I see how it is. ;) Wow, on the 11 inches. Courageous! I'm glad you love it. I used to hate pics of me then they got worse and I thought, I wish I had more pics of be "back when" so I finally just gave up. I'm still not in many because I'm usually taking them, but I don't protest or hide either. Let Piper practice on you more, and then maybe you'll get more comfortable before your trip. :cutie:

I tend to go from long to short like that. It had prob been about 5 yrs? I'm not very fixated on hair though, I'm happy as long as I don't have to get a curling iron out. With just the two of us, more often than not I'm behind the camera as well. Good idea about letting her practice more!

pooh'smate
12-03-2009, 10:59 PM
Yes, we went to the fly-in almost every summer when I had time with my Dad (he was from there also & folks were divorced). Piper and I were there summer '08, but not for the fly-in, unfortunately. I would like her to be able to see one. Though I have made sure she's gotten grapenut ice cream from the dairy bar! Do you remember the fries there with the little wooden fork?

I never had the fries. Did they serve them with anything? We were always at the Forestry Station since that is where my dad worked and they did a lot of security for the fly-in. I bet you had Gifford's ice cream. That is another thing I miss. Actually my dh and I really like VA and would prefer to move there because we will be closer to family but not have to deal with them on a daily bases.;) He likes the Charlottesville area.

mrsksomeday
12-03-2009, 11:34 PM
Hi Amanda, I followed you over from Jordan's PTR. I read all of your PTR tonight and want to say how adorable Piper is, she is beautiful.

I admire you so much for all you do for Piper. Being a caregiver to someone you love is rewarding and frustrating at times. I take care of my dbf who has Cerebral Palsy and is in a power wheelchair.

You will love WDW, it is just so magical. There is one piece of advice I want to offer to you. I know it is a "trip of a lifetime" but don't forget to just stop and breath. Just stop and really look at things, watch the streetmosphere people, look at the beauty of the buildings, the landscaping, and talk to the castmembers.

I can't wait to hear what happens when you spring the surprise on her. We surprised the grandkids the night before we were going to Disney, they loved it.

All7OfUs
12-03-2009, 11:49 PM
Amanda!

Totally have to second what Tracy just said. Disney is chalk full of little magical details that beg exploring and discovering. Take time to notice the themed decorations (that are more often than not the real deal) in stores, listen to the background music, and stop to watch the shows. You're going to have such a wonderful time!!

pipersmom
12-04-2009, 08:19 AM
I never had the fries. Did they serve them with anything? We were always at the Forestry Station since that is where my dad worked and they did a lot of security for the fly-in. I bet you had Gifford's ice cream. That is another thing I miss. Actually my dh and I really like VA and would prefer to move there because we will be closer to family but not have to deal with them on a daily bases.;) He likes the Charlottesville area.

Just with ketchup :) It was/is Gifford's ice cream that they use...we bought a half gallon while we were there and it at our leisure, lol. We're about 90 min southwest of C'ville, and it is a beautiful area, we take Piper to UVa to see her CF Docs.

Hi Amanda, I followed you over from Jordan's PTR. I read all of your PTR tonight and want to say how adorable Piper is, she is beautiful.

I admire you so much for all you do for Piper. Being a caregiver to someone you love is rewarding and frustrating at times. I take care of my dbf who has Cerebral Palsy and is in a power wheelchair.

You will love WDW, it is just so magical. There is one piece of advice I want to offer to you. I know it is a "trip of a lifetime" but don't forget to just stop and breath. Just stop and really look at things, watch the streetmosphere people, look at the beauty of the buildings, the landscaping, and talk to the castmembers.

I can't wait to hear what happens when you spring the surprise on her. We surprised the grandkids the night before we were going to Disney, they loved it.

:welcome: Thank you for coming over! I think Piper's personality tends to shine through, even in pictures. I actually followed your PTR and have been lurking on your TR. I've been trying hard to keep in mind to stop and smell the roses often while we're there. Piper will make it somewhat easy though, she's very much a "looker"..she loves to take everything in. I'm hoping to pick up a couple of the CDs of the park music while we're there, to me it seems like an easy way to help remember the trip. Once we have dates, I'm going to start asking for more advice, and will mention the twist I haven't mentioned yet :rolleyes1

Amanda!

Totally have to second what Tracy just said. Disney is chalk full of little magical details that beg exploring and discovering. Take time to notice the themed decorations (that are more often than not the real deal) in stores, listen to the background music, and stop to watch the shows. You're going to have such a wonderful time!!

We're actually really looking forward to the shows, both the "planned" ones, and things like the performers at World Pavilion. I'm also going to try to pick up a hidden mickey book between now and then, it's something else that Piper would really groove on. We were at my mom's yesterday and the travel channel did two Disney themed shows back to back..so I gave Piper a break from homework and we watched. She was absolutely spellbound..the first one was a "Samantha Brown's favorites" and the second was "The Magic Behind the Scenes"..I think. She loved loved loved the behind the scenes show, so I think she'll really enjoy hunting for Mickeys.

jordanyosh
12-05-2009, 02:25 AM
I didn't have to pimp you out! People are just coming over:thumbsup2

mrsksomeday
12-05-2009, 02:37 AM
We have 3 WDW CD's, Wishes, Illuminations, and Spectromagic. I :love: them so much. They really do bring back the magic for me and I never get tired of listening to them.

pipersmom
12-05-2009, 08:25 AM
I didn't have to pimp you out! People are just coming over:thumbsup2

I know..isn't it awesome ? :love:


We have 3 WDW CD's, Wishes, Illuminations, and Spectromagic. I :love: them so much. They really do bring back the magic for me and I never get tired of listening to them.

We're very much music people, esp in the car..so I'll get them then get my brother to put them on cassette for me. Yes..I have a cassette desk in my jeep..lol.

All7OfUs
12-05-2009, 08:34 AM
We're actually really looking forward to the shows, both the "planned" ones, and things like the performers at World Pavilion. I'm also going to try to pick up a hidden mickey book between now and then, it's something else that Piper would really groove on. We were at my mom's yesterday and the travel channel did two Disney themed shows back to back..so I gave Piper a break from homework and we watched. She was absolutely spellbound..the first one was a "Samantha Brown's favorites" and the second was "The Magic Behind the Scenes"..I think. She loved loved loved the behind the scenes show, so I think she'll really enjoy hunting for Mickeys.



Yes! Do get the HM book!! I am definitely taking mine with me in my bag, to whip out wherever I am. I do think Piper will like this, esp. if she is observant like you say.

pipersmom
12-05-2009, 09:18 AM
Yes! Do get the HM book!! I am definitely taking mine with me in my bag, to whip out wherever I am. I do think Piper will like this, esp. if she is observant like you say.

I'm about to update with more info!

pipersmom
12-05-2009, 09:37 AM
So when Piper came home from her Dad's she had increased cough and a runny nose, as usual. Her cough has gotten worse and last night I had to hook her back up to the oxygen..on a 1.5 liters. She's doing a treatment right now and I'm hoping after that I'll be able to at least wean her down somewhat. More (or continued) prayers would be appreciated. I'll be calling her Drs on Monday since she stays on oral antibiotics all the time now..in the past that would have been the next step, now the next step is IVs. Bleh.


Okay, now onto the fun stuff. I had promised Piper that after we did her homebound last night we would go through the park to see the Christmas lights. As we got to the end of the loop, who should we see but Santa?? And a LOT of helpers, there was a gingerbread man, snowman, penguin, lots of elves, toy soldiers, and even the Grinch! I had no idea they were going to be there, but it was definitely good karma. She got her pic taken with Santa (I didn't have my camera, but will go to the Rec Dept Wed to pick up the picture) and got to hang out with all the helpers. She was so excited there was a penguin!! You could see the girl's face who was wearing the costume, but Piper didn't care..she was loving it, penguins are her fave.

I went to Abe Books last night (I LOVE their website) and picked up a copy of Birnbaum's Guide to WDW for Kids by Kids, and the first two books in the Kingdom Keepers series all for under $25 (w/out shipping the 3 books were $13). Now I am really DONE shopping except for stocking stuffers. From the description it looked like Birnbaum's had hidden Mickey info in it, but if there's not, or not enough, we'll pick up the Hidden Mickey book later on.

Her Elf also arrived last night from the North Pole to keep an eye on her until Christmas..I thought the letter from Santa explained everything she needed to know, but evidently I was wrong, because she's writing a letter to Santa as she does her treatment with LOTS more questions about how she should care for Alabaster and what kinds of things he likes to do.I think I may have gotten into more than I bargained for when I decided this would be fun!

It's a rain/snow/slush mix here right now, supposed to change to all snow by noon, with 1-3 inches forecasted! Good day to stay inside for us..I hope everyone has a wonderful day!

Edited to add: Okay, I just saw the letter she wrote and she asked Santa if Alabaster has any medical needs. That kind of thing just kills me :sad: though I understand it's a reasonable question to her.

All7OfUs
12-05-2009, 10:01 AM
Boo, that Piper's not doing so well! Will indeed keep up our prayers for her!

Love that you went to the zoo lights, and got to see tons of helpers. I'll bet she thought that was neato.

Yeah, Birnbaum doesn't have nearly the info on HMs as Steven Barrett's book!You need to get it. It's a small-ish size and perfect for carrying in a purse or bag.

dawnbu40
12-05-2009, 10:24 AM
You and Piper are in my thoughts and prayers! :goodvibes

Birnbaum's book was the first I ever bought, way back in the 80's!, and I really liked how he set things up and his suggestions for touring! I hope you enjoy reading it!

pipersmom
12-05-2009, 10:45 AM
Boo, that Piper's not doing so well! Will indeed keep up our prayers for her!

Love that you went to the zoo lights, and got to see tons of helpers. I'll bet she thought that was neato.

Yeah, Birnbaum doesn't have nearly the info on HMs as Steven Barrett's book!You need to get it. It's a small-ish size and perfect for carrying in a purse or bag.

You and Piper are in my thoughts and prayers! :goodvibes

Birnbaum's book was the first I ever bought, way back in the 80's!, and I really liked how he set things up and his suggestions for touring! I hope you enjoy reading it!

Thank you both for the continued prayers! After her treatment I actually had to up her O2 to 2 liters, so IVs are prob pretty inevitable.

When we were planning our aborted DC trip we checked out some books from the library and bought a planning guide, and Piper read them all from cover to cover, so I'm thinking she'll love the kids guide written by kids.

Momofwishkid
12-05-2009, 11:44 AM
Keeping Piper in my prayers. I hope she'll get better and not have to do Iv's.

pooh'smate
12-05-2009, 12:45 PM
Praying for Piper today. :hug:

maroo
12-05-2009, 02:25 PM
aw man! I hope Piper is better soon!! She needs to get well quick!

Hang in there! :hug:

pipersmom
12-05-2009, 05:25 PM
Keeping Piper in my prayers. I hope she'll get better and not have to do Iv's.

Praying for Piper today. :hug:

aw man! I hope Piper is better soon!! She needs to get well quick!

Hang in there! :hug:

Thank you all ! :grouphug: :flower3:

jordanyosh
12-05-2009, 05:33 PM
praying for piper and mama too.

nice trip through the park

Snow? What's that?

pipersmom
12-05-2009, 08:00 PM
praying for piper and mama too.

nice trip through the park

Snow? What's that?

Jordan..you tell me and we'll both know, we didn't end up getting jack! There was wet snow coming down at a couple points, but not enough to stick at ALL. It was very disappointing. (Not really..I'm happy just looking at it coming down.)

Thank you for the prayers, btw :flower3:

yinyanggirls
12-06-2009, 07:40 AM
Yes..I have a cassette desk in my jeep..lol.


Wow, That's awesome! I thought we were the last ones until we sold our Jeep 3 yrs ago! We own 2 VCRs as well, and people keep giving us tapes.:lmao:

I'll be calling her Drs on Monday since she stays on oral antibiotics all the time now..in the past that would have been the next step, now the next step is IVs. Bleh.

Oh no. That stinks. Here's hoping for a miraculous recovery today.....

Okay, now onto the fun stuff. .... She was so excited there was a penguin!! You could see the girl's face who was wearing the costume, but Piper didn't care..she was loving it, penguins are her fave.

How cute!


I went to Abe Books last night (I LOVE their website) and picked up a copy of Birnbaum's Guide to WDW for Kids by Kids, and the first two books in the Kingdom Keepers series all for under $25 (w/out shipping the 3 books were $13). Now I am really DONE shopping except for stocking stuffers. From the description it looked like Birnbaum's had hidden Mickey info in it, but if there's not, or not enough, we'll pick up the Hidden Mickey book later on.

You mentioned checking books out from the library, but don't forget that you can probably request books from other branches in your county if they are not at your local branch, and also, you might be able to request certain books for them to purchase for their branch. With the new year right around the corner it might be perfect timing since tour books are usually updated yearly.


[SIZE="3"]It's a rain/snow/slush mix here right now, supposed to change to all snow by noon, with 1-3 inches forecasted! Good day to stay inside for us..I hope everyone has a wonderful day!

That's what I loved about TX. We saw snow at least one time per year, but nothing to shovel. :thumbsup2

Edited to add: Okay, I just saw the letter she wrote and she asked Santa if Alabaster has any medical needs. That kind of thing just kills me :sad: though I understand it's a reasonable question to her.

Makes me sad, what our kids are used to...
Okay, what did I miss? Who is Alabaster? Who is this Elf you refer to????

pipersmom
12-06-2009, 09:29 AM
Wow, That's awesome! I thought we were the last ones until we sold our Jeep 3 yrs ago! We own 2 VCRs as well, and people keep giving us tapes.:lmao:

We also have a vcr/dvd player..we had waaay too many vcr tapes to chuck when dvds got popular. I love my cassette player, lets me play all my old ones, and when I get a cd, I just get my bro to transfer it to cassette for me.

Makes me sad, what our kids are used to...
Okay, what did I miss? Who is Alabaster? Who is this Elf you refer to????


Alabaster is the Christmas elf that has come to watch over Piper and make sure she's a good girl until Christmas. He eats crackers and water and reports to Santa at night while she's asleep. She has to sprinkle magic elf dust (glitter) on him at night before bed so he can come alive. This morning she found him in the bathroom in front of my compact mirror brushing his teeth with a q-tip. He had left toothpaste allllllll over the counter and in the sink! There was also floss out beside him! This is the first year we've done this, and she's loving it. I think tomorrow morning she's going to find him on the kitchen table having a bowl of cereal with cereal on the table, in the bowl, on him, etc.

pacrosby
12-06-2009, 10:14 AM
Is Alabaster similar too (or the same as) the 'Elf on the Shelf'??? Reminds me I have to give him a call and make sure he comes back to our house (he hung with us last year). Maybe he'll show up in our villa at GKTW???????;)


Hope Piper's feeling better today:hug:

Pamela:santa:

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

pipersmom
12-06-2009, 02:41 PM
Is Alabaster similar too (or the same as) the 'Elf on the Shelf'??? Reminds me I have to give him a call and make sure he comes back to our house (he hung with us last year). Maybe he'll show up in our villa at GKTW???????;)


Hope Piper's feeling better today:hug:

Pamela:santa:

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

They must be cousins ;) Ohh..that would be fun for him to show up at GKTW! Piper is doing better today, we've cranked her o2 back to 1 liter. Something about being hooked up to her vest 4 hrs a day must be doing it, lol.

cantwaittoseemickey
12-06-2009, 02:46 PM
I hope Piper is feeling better and does not need an I.V. Definately praying for her.

The Elf thing sounds soo cute!

pipersmom
12-06-2009, 02:51 PM
She seems to be doing somewhat better, but I've learned not to count on anything. And :welcome:, btw. I think I'm enjoying doing the elf as much as she is! I would def recommend it to anyone.

jordanyosh
12-06-2009, 07:52 PM
Glad to hear Piper is doing somewhat better, although I'd like to hear she's doing much better.

chrissid7
12-07-2009, 01:07 AM
OMG Amanda I am so far behind. I hated getting on her and 1st seeing that piper was back on O2, but glad she is doing better now. OMG I cracked up when I read about her letter to Santa and worried about his medical needs lol!!! :rotfl2: Im telling ya I could so see Alyssa doing that. These girls crack me up! We have been thinking of you guys and I was wondering how much snow you ended up getting? We just got a dusting but it was pretty. We think of you guys a lot! I will be so glad when all of the chaos settles here so I can jump in on time for yours to begin lol. :hug:

pipersmom
12-07-2009, 07:58 AM
Glad to hear Piper is doing somewhat better, although I'd like to hear she's doing much better.

I'm calling her Drs today, she's still running a low grade fever..ugh!

OMG Amanda I am so far behind. I hated getting on her and 1st seeing that piper was back on O2, but glad she is doing better now. OMG I cracked up when I read about her letter to Santa and worried about his medical needs lol!!! :rotfl2: Im telling ya I could so see Alyssa doing that. These girls crack me up! We have been thinking of you guys and I was wondering how much snow you ended up getting? We just got a dusting but it was pretty. We think of you guys a lot! I will be so glad when all of the chaos settles here so I can jump in on time for yours to begin lol. :hug:

It's okay, I just read your update! We didn't get any snow sticking, I think the ground was just too wet. We've been thinking about you guys too..I can't wait to see the pics of the house and the big give stuff!! Give Alyssa hugs for us!

englishrose47
12-07-2009, 10:38 AM
I'm here with a little help from your friends !!!

cantwaittoseemickey
12-07-2009, 11:14 AM
Thinking of Piper today:hug: I totally understand about the not counting on anything. hugs!

pipersmom
12-07-2009, 11:44 AM
I'm here with a little help from your friends !!!

:welcome: Thank you for coming over!! ..gotta :love: Jordan!

Thinking of Piper today:hug: I totally understand about the not counting on anything. hugs!

I'm waiting on a call back from her Dr right now, she's still running a low grade fever, lots of coughing and back up to 1.5 liters. :sad2:

GreatBiscuit
12-07-2009, 12:36 PM
Sorry to hear Piper is not doing well. Saying a prayer for her. That was too cool about her meeting the penguin! And loved the Elf stories.