Princess Alyssa's Christmas Wish/ GKTW/ Dec 10-16

[chrissid7]

Hi everyone

This trip is for my DD(10) Alyssa but I am the planner, so this will be a PTR written by me with some of Alyssa’s influence lol! First I will introduce my cast members and later I will explain how Alyssa got a wish granted to her.


My name is Chrissi and I am the planner of all things in our life. :surfweb: I have a wonderful husband and 3 incredible kids. I have the luxury of being able to work from home and I enjoy being at home and raising my kids.

DH is Dwayne and he is incredible! :hug: He has a demanding job that keeps him busy during the day and then in the evening he is a high school football coach (that’s his passion). He was a single dad when me met, and I saw the love in him the 1st time we met. I knew I had to have them both as my guys.

DD(17) Shayna she is my Ariel.:drive:She is a beautiful redhead that is sweet and caring. She is a senior in high school this year and that makes me cry! I still see her as my baby and just want to squish her down and put her in my pocket. She loves kids and is a great big sister.
http://i646.photobucket.com/albums/uu190/chrissid72004/102_0960.jpg


DS (16) DJ He is the athlete. :cheer2: He is also sweet, but you know he is a football player so he just has to be hard sometimes. Luckily im his mom and I see the sweetness even when nobody else can. He was 4 when his dad and I met, and I don’t think I could’ve been the mom I am today with out my son.
http://i646.photobucket.com/albums/uu190/chrissid72004/dj34.jpg


DD(10) Alyssa the wish girl! :tink:She is such a princess and she is the core of the family. She is the one that bonded us all together permanently. She belongs to each of us! She loves animals and babies. She is a webkinz fanatic…sighhh. She has an army and I mean Army of people that love her so much and she has touched so many lives that I still cant grasp it sometimes. She is an Angel living right here in my world and she amazes me!
http://i646.photobucket.com/albums/uu190/chrissid72004/Copyofalyssafrontcastle.jpg

[chrissid7]

OMG IM so sorry that they are so huge maybe ill go resize them now, will that fix it here. Im a newbie (obviously). I have done a lot with photos but never used photobucket before. :eek:

[chrissid7]

Holy cow that was so much easier than I thought it was ging to be. I didnt even need to tell yall that I messed up lol. I think I love photobucket and why havent I used it before? OK Ill get back on the topic tomorrow.

[chrissid7]

ahhhhh, I feel better today knowing I started the thread last night. I feel like its getting official. So I caved and called MAW but no returned call just yet. It will be 3 weeks tomorrow since her granters came to meet her and Im getting a nervous sorta paniced feel. Im just afraid that i wont be able to get the ADRs that we really want. Ill survive im sure :headache:.

Ive been seeing a lot of people going in December. I think its going to be amazing! :cool1:

[chrissid7]

If anyone see's this could you please tell me how to pm a moderator. I know how to pm but I cant find a mod. I would like to have this put with the other wish trips. :confused3

[maroo]

I found this!!!!!

Woo Hoo! Another wish pre-trip report!

Thank you so much for sending me a PM so I could find it!

I am going to link it in the Wish Trippers Thread...

It is the blue one at the bottom of my siggie. Feel free to pop over and talk to us over there, too! :)

[pipersmom]

Can't wait to hear more...I'm impatient too, the waiting is killing me!

[2specialkids]

Your family is adorable! I can't wait to hear more. popcorn::

[maroo]

Can't wait to hear more...I'm impatient too, the waiting is killing me!

As much as possible (and this might be the hardest part of the whole thing :rotfl2:)...

Enjoy the process. The time will be SO SLOW...and it will FLY BY...at the same time.

Days will be long while you wait...but then the day gets here and you just can't figure out where all of the time went.

The planning is half of the fun! So enjoy it! Nothing is better than looking forward to the PERFECT, MAGICAL vacation we create in our mind! It really is fun!!

The trip won't be perfect (but it will be very close!!!!)...the magic will overwhelm you even more than you think it will!...and you guys will have a good time!

And maybe our paths will cross...you never know! :)

[kdzbear]

Welcome! I can't wait to read more about your daughter and her wish trip! princess:

[chrissid7]

We got our dates!!! We got our Dates!!! :cool1:Like 5 seconds ago :banana: and I couldnt wait to post. We will arive on Dec 10th and Leave on the 16th! We were struggling with the whole airplane thing but she finally agreed that she would be ok. Fingers and toes crossed that she doesnt have a panic attack in the airport. Im waiting now to find out if Make-a-Wish will be able to get us tickets to MVMCP. If they cant im going to try but boy o boy is that going to put a dent in the wallet. :dance3: :dance3: :dance3:

I will be updating again in a few hours but I have to scoot right now!

Im so thankful to Maroo who got my post where it needed to be! I was a lil worried when nobody saw me :confused3

[yinyanggirls]

We got our dates!!! We got our Dates!!! :cool1:Like 5 seconds ago :banana: and I couldnt wait to post. We will arive on Dec 10th and Leave on the 16th!

HURRAY!!!:yay: That seems like a perfect time to go, just before the Cmas break, so not too many crowds. Did you make any ADRs yet? Hopefully that time frame won't be too hard to get what you want.

As far as the plane ride, is AA doing the wish flight for all MAW kids or just certain ones? Not sure how that whole thing works. It might help her to enjoy the ride if she gets a little party at the airport. ;)

[misskate]

I'm in! Wish trips really touch my heart. Can't wait to read more!:hug:

[maroo]

We got our dates!!! We got our Dates!!! :cool1:Like 5 seconds ago :banana: and I couldnt wait to post. We will arive on Dec 10th and Leave on the 16th! We were struggling with the whole airplane thing but she finally agreed that she would be ok. Fingers and toes crossed that she doesnt have a panic attack in the airport. Im waiting now to find out if Make-a-Wish will be able to get us tickets to MVMCP. If they cant im going to try but boy o boy is that going to put a dent in the wallet. :dance3: :dance3: :dance3:

I will be updating again in a few hours but I have to scoot right now!

Im so thankful to Maroo who got my post where it needed to be! I was a lil worried when nobody saw me :confused3

Woo Hoo!!

I am arriving on the 15th and leaving the 20th!

Our plans for the 15th (which may not coincide with yours...but if they happen to...:rolleyes1) is to go to Epcot for lunch (Le Cellier) and see the Candlelight Processional at 5:00 PM. We may go to the Osbourne Lights that night, too. Maybe? Depends on how tired Rachel is from the long drive.

I will update the Wish Trippers page with your dates!! :yay: :woohoo: :santa:

[chrissid7]

Can't wait to hear more...I'm impatient too, the waiting is killing me!

Im from Va too!!! Where (general) are ya?

[chrissid7]

Well see... I had this awesome list ready to roll with the days as soon as they were confirmed, but now tht they are I have to take a 2nd look. tonight I get any ressies together that I can. I really want to get ressies for the CP and tickets to MVMCP but I dont know if that will work out. I will post as soon as I get some plans confirmed though!! :banana: I am flipping out now, so excited!!! My DH who had not really had much reaction to anything up to this point actually got excited today and that makes it great! My teen girl just got hame and gave a big wooohooo! Not in love with the early flight but excited to get there early! DS not home yet but I know he is ready!

look look look down..... I got to get me a ticker.... yes sir!!!!!





Woo Hoo!!

I am arriving on the 15th and leaving the 20th!

Our plans for the 15th (which may not coincide with yours...but if they happen to...:rolleyes1) is to go to Epcot for lunch (Le Cellier) and see the Candlelight Processional at 5:00 PM. We may go to the Osbourne Lights that night, too. Maybe? Depends on how tired Rachel is from the long drive.

I will update the Wish Trippers page with your dates!! :yay: :woohoo: :santa:

[pipersmom]

Im from Va too!!! Where (general) are ya?

Oh geez...I usually look at where everyone is from, and I didn't even notice you were in Va!! We're southwestern, Roanoke area. I may have to pm you, because I've got some questions you could answer being from the same chapter :)

[kdzbear]

Oh geez...I usually look at where everyone is from, and I didn't even notice you were in Va!! We're southwestern, Roanoke area. I may have to pm you, because I've got some questions you could answer being from the same chapter :)

I am responding to both of you. I lived in Roanoke my senior year of high school and then I went to my freshman year of college not too far from there. I still have many relatives in Northern Virginia. I just had to pipe in! :wizard:

[chrissid7]

VA is rockin the house what what! lol! pm away pipersmom, ill help if I can!

Roanoke is about 1 1/2 hours from me but I love it there! So pretty in the fall especially!

[pipersmom]

I am responding to both of you. I lived in Roanoke my senior year of high school and then I went to my freshman year of college not too far from there. I still have many relatives in Northern Virginia. I just had to pipe in! :wizard:

Why do I have IASW music running through my head right now? :laughing:

VA is rockin the house what what! lol! pm away pipersmom, ill help if I can!

Roanoke is about 1 1/2 hours from me but I love it there! So pretty in the fall especially!

I didn't realize Mechanicsville was that close to us..thought it was close to Norfolk/Portsmouth area..I need to bone up on my geography!!

[chrissid7]

Nope im kinda in the middle, I can be in VA Beach in about an hour also!

[chrissid7]

HURRAY!!!:yay: That seems like a perfect time to go, just before the Cmas break, so not too many crowds. Did you make any ADRs yet? Hopefully that time frame won't be too hard to get what you want.

As far as the plane ride, is AA doing the wish flight for all MAW kids or just certain ones? Not sure how that whole thing works. It might help her to enjoy the ride if she gets a little party at the airport. ;)

No unfortunalty it isnt the wish flight. I wish it was I watched the video and have seen pics nd how awesome would that be... no time to be scared right??

[chrissid7]

Part 2 The reason for the trip

Alyssa was diagnosed with Cystic fibrosis just before she turned 2. That was with a fight to get her diagnosed. That’s a long long story so I will skip it but we though we would see improvement once she was diagnosed and to an extent we did but then other things changed.

She always struggled with weight, w tried so hard to help her gain we would have great months and not so great months. She has been in the hospital 14 times for lung issues and we have also don’t months and months at home on IV’s.

When she was 4 we started noticing that Alyssa would “daydream” a lot even in the middle of conversations. It didn’t take long before I realized she was not daydreaming and something wasn’t right. She ended up being diagnosed with Absence seizures and needed medication to help but it never completely stop them (the reason will be later). She was having 100’s a day and it was affecting everything, its like turning off your brain for 10 seconds at a time hundreds of times a day. You miss a lot of little pieces.

She was still having digestive issues that we couldn’t seem to get straight again long story short, by process of elimination I figured out that wheat was the issue. As soon as we started the Gluten free diet we saw amazing!!!!! Changes!! In her and I. I have not had a migraine in almost 3 years (when we started).

When we started the gluten free diet we accidentally went all natural in the process because its easier to eat all natural, you can find more to eat that way. We noticed the seizures went away all togther! So with many test and a 24 EEG that floored our Neurologist (who didn’t believe the seizures were being sparked up terribly when she ate artificial colors or flavors). During the 1st 12 hours of the EEG I had her completely seizure free, I didn’t let her eat anything “yucky” as we call it now. The EEG showed no seizure activity. At the 12 hour mark I took her to the 7-11 and told her to get any of the yucky stuff she wanted, she knew what we had to do and why. We were both nervous but we had to let him see that it is possible. Well lets just say within 30 minutes we were both crying because she couldn’t even finish a sentence and I felt horrible!! She said she was scared because she didn’t feel right, but she couldn’t even cry good because the seizures make her stop crying.

[chrissid7]

So now she is much much better with the seizures controlled, but the CF is not giving her any breaks.

She spent most of this summer in the hospital and she ended up getting the “MICKEY” button or G-tube. She also had severe reflux so she had a procedure done to her stomach called a nissen to help with the reflux. She ended up with pneumonia from the surgery and became very very sick while she was in the hospital. She had panic attacks (we had never seen one before) and that is horrible to see your child thinking they re dying right then and you cant console them, ughhh broke my heart. This is why we dicided she could go ahead and make her wish. She has had a terrible year and she deserves it. I was always reluctant because I didn’t understand it and I though they were telling me that she was that sick. Well right now she is at 40% lung capacity and its very hard to accept and I pray and fight to get it higher.

She has only been to school 4 days this year trying to keep her strong and avoid the bugs right now.

This morning she woke @3am and had a low grade temp, sore throat and stuffy nose. Pray to God or whomever you pray to that she doesn’t end up with the H1N1 or any flu for that matter. Her lil lungs just don’t need that right now!

Ok that’s our book but unfortunately there are so many more stories of things that my sweet princess has been put through, as most of the people on the wish trips know.

[maroo]

I definitely pray to God - and I will be praying for you guys.

Have you had H1N1 in your area? Or lots of flu like illness going around?

I will pray that this is just a little bug or something. Please keep us posted!

[pipersmom]

I understand completely what you're going through...will be thinking about Alyssa and hoping her resp symptoms don't turn into anything else..ugh, that's one of the things I hate the most about CF. Is she DDF508? Just asking because you don't see many kids going through as many issues as Piper and Alyssa seem to be, if you're more comfy, just pm me..

[mandy2012]

:santa:

[chrissid7]

I definitely pray to God - and I will be praying for you guys.

Have you had H1N1 in your area? Or lots of flu like illness going around?

I will pray that this is just a little bug or something. Please keep us posted!


Thank you thank you thank!! Prayers worked and its not the flu. We have had a lot of h1n1 in our area and I was freaking out! :yay: :yay: :yay: :yay:

[chrissid7]

I understand completely what you're going through...will be thinking about Alyssa and hoping her resp symptoms don't turn into anything else..ugh, that's one of the things I hate the most about CF. Is she DDF508? Just asking because you don't see many kids going through as many issues as Piper and Alyssa seem to be, if you're more comfy, just pm me..

Actually yes she id DDF508 which sucks because of the vast symptoms but also good because most of the genetic research is being done for DDF508 so I think and pray that our girls will have the 1st shot at the cure!!

We will see that ya know!! I try my best to keep that in my head because I think a positive outlook helps the kids too. We will see the cure!! :thumbsup2

omg I am so excited for your trip too. I really hope ya hear from them this week!

[yinyanggirls]

Alyssa sounds like such a trooper. I am grateful that most of my girls' hard stuff (surgeries and procedures) were done when they were little and I didn't have to try and explain. I'm so glad you guys figured out how to get rid of the seizures. We haven't done gluten free, but I did cut out preservatives and dairy and it didn't seem to help any of Phoebe's issues that the doc said it would. We have moved a few times and also "fired" some of her docs, and not one single neurologist has my confidence. We used to think she had absence seizures, but then they changed and no one can catch them on EEGs and the one doc that saw a video taped episode called it a "spell". When I asked what a spell was he said they don't really know. HUH? I don't think neuros know anything. I wish I could find one to prove me wrong! So again, kudos on finding your own answers!

[chrissid7]

Alyssa sounds like such a trooper. I am grateful that most of my girls' hard stuff (surgeries and procedures) were done when they were little and I didn't have to try and explain. I'm so glad you guys figured out how to get rid of the seizures. We haven't done gluten free, but I did cut out preservatives and dairy and it didn't seem to help any of Phoebe's issues that the doc said it would. We have moved a few times and also "fired" some of her docs, and not one single neurologist has my confidence. We used to think she had absence seizures, but then they changed and no one can catch them on EEGs and the one doc that saw a video taped episode called it a "spell". When I asked what a spell was he said they don't really know. HUH? I don't think neuros know anything. I wish I could find one to prove me wrong! So again, kudos on finding your own answers!

Thanks its certainly never easy to get through to the docs sometimes. I worry that Alyssa's will change and I wont be able to help her. I have to admit it was a relief of sorts to actually be able to help fix something. With the lung issues I always feel so overwhelmed and no matter what I do I cant stop the progression. I just want her lungs to be healthy so badly it makes me want to scream sometimes.

Funny a "speel" must be a very technical term taught to Neurologists early in their education lol. Ive heard it several times as well. As if the Fairy Godmother has given it to them, spell pffftttt!

By the way I think cutting the preservatives out as much as possible is a GREAT thing even in healthy children. So Kudo's to you for that. That is a hard thing to cut out.

Hope you find your answers! :hug:

[chrissid7]

I took Alyssa to Disney on Ice tonight!!! That will really get you in the mood! It was so nice! When Mickey and Minnie came out I got goosebumps! We saw Disney on ice last year too and I think we will now make that a tradition because we just love it! princess:

[Uuaww]

read your pretrip report, good luck on the final months of planning!

[kdzbear]

I took Alyssa to Disney on Ice tonight!!! That will really get you in the mood! It was so nice! When Mickey and Minnie came out I got goosebumps! We saw Disney on ice last year too and I think we will now make that a tradition because we just love it! princess:

I am glad she had so much fun at the show. It only comes here once every three or four years. Did it get her more excited for her trip? princess:

[chrissid7]

oh my gosh yes! There was a part in it where they had all of the countries from its a small world and they played the song. They were all dressed in the blue and white and then they had 1 of the boats all lit up omg it was like being there soooo aweome. Im one of the people who loved that ride (we had to ride it twice in case I missed something lol).

[yinyanggirls]

Funny a "speel" must be a very technical term taught to Neurologists early in their education lol. Ive heard it several times as well. As if the Fairy Godmother has given it to them, spell pffftttt!


That's what I say! Funny term used to describe something they don't understand. I think I'll actually be looking for a new neuro next week because she is starting to do weird things again. It's been a couple of years since she did anything like this on a regular basis, but it's starting again. She gets really rigid and fixed in her position and then her head jerks down, always at the same angle. These are different than the last ones, but remind me of them. I wish she could tell me what she's experiencing. Our kiddos are so brave, and they don't even know it.

[chrissid7]

That's what I say! Funny term used to describe something they don't understand. I think I'll actually be looking for a new neuro next week because she is starting to do weird things again. It's been a couple of years since she did anything like this on a regular basis, but it's starting again. She gets really rigid and fixed in her position and then her head jerks down, always at the same angle. These are different than the last ones, but remind me of them. I wish she could tell me what she's experiencing. Our kiddos are so brave, and they don't even know it.

They really are amazing. Im so sorry she is starting to have stuff happen again. I know how stressful that is. Its so hard when you just want to help and theres not much you can do. When Alyssa gets really tired she has more seizures too. We had a super busy weekend with a house full of kids. It was great for her lungs because she laughed and ran, but today the seizures got intense. She will sometimes keep walking (thats kinda new) during one and today she walked into the coffee table, it didnt hurt her but I could see her eyes and I knew she was having one. I tried to call her name but she just kept walking. I caught her just as she hit it. She started to cry, but just because it made her so nervous. She can tell now and she hates the way she feels. She went to sleep early tonight. I just wish as I know you do too that the magic pill would arrive! Prayers that hers get under control quickly as well. :hug:

[chrissid7]

oh my gosh oh my gosh!!! I have awesome news that Alyssa and I are soooo excited about! Well a couple of things and 1 im not 100% sure I can share yet but I will say that it is only 45 more days till we leave and that her send off party is on December 1st. :cheer2:

[maroo]

Wow! Sounds very interesting!!!

Feel free to tell is everything - we won't tell a soul!

Hehe. Just kiddin! But I can't wait to hear all about it. :)

[HeatherSue]

I don't think I ever subscribed to your PTR!! But, I've been reading it! :thumbsup2

[chrissid7]

I have thrilling news!!!! Ok first off, Alyssa was chosen for the BIG GIVE OMG WOOOOOHOOOO!!! We are so excited! :woohoo::woohoo: I have been a fan of their work since my 1st visit to the Dis. Second today I found out that are wish granted GOT US TICKETS TO MVMCP!!!! :banana::santa::banana::santa: I am loving life already right, I on a whim I decided to try my dining ressies again (I have none) I really wanted to get 1 at Ohana because of the wonderful things ive heard especially about the Gluten free options. I GOT IN!!!! I could not believe my eyes when the lil dot appeard. We will be there during wishes which I hear is a great view and they pipe in the music ahhhhhhh! What a great DAY!!!

Now I want to ask for prayers for my dear friend who will be giving birth any minute and she is only 28 weeks pregnant. She has been on bed rest in the hospital for 3 weeks with placental abruption trying to hold it off as long as possible. They both need prayers (shes having a lil girl) she will deliver today.

Also my oldest has been having some things come up and she is being seen in the morning but Im kinda scared. She has been having Ketones show up in her urine and this morning had very unusual stuff happening.

And then theres my sister and my best friend. She found a lump and Im scared but I know it will be nothing, she is also being seen tomorrw and I need prayers for it to be nothing.

These are 3 very very special girls to me and I hate that any of them have anything to deal with. Please keep them all in your prayers tonight. I will update tomorrow.

Keeping the positive light is a task but I have had all of this great Disney news to help add some balance. :upsidedow

[maroo]

I have thrilling news!!!! Ok first off, Alyssa was chosen for the BIG GIVE OMG WOOOOOHOOOO!!! We are so excited! :woohoo::woohoo: I have been a fan of their work since my 1st visit to the Dis. Second today I found out that are wish granted GOT US TICKETS TO MVMCP!!!! :banana::santa::banana::santa: I am loving life already right, I on a whim I decided to try my dining ressies again (I have none) I really wanted to get 1 at Ohana because of the wonderful things ive heard especially about the Gluten free options. I GOT IN!!!! I could not believe my eyes when the lil dot appeard. We will be there during wishes which I hear is a great view and they pipe in the music ahhhhhhh! What a great DAY!!!

Now I want to ask for prayers for my dear friend who will be giving birth any minute and she is only 28 weeks pregnant. She has been on bed rest in the hospital for 3 weeks with placental abruption trying to hold it off as long as possible. They both need prayers (shes having a lil girl) she will deliver today.

Also my oldest has been having some things come up and she is being seen in the morning but Im kinda scared. She has been having Ketones show up in her urine and this morning had very unusual stuff happening.

And then theres my sister and my best friend. She found a lump and Im scared but I know it will be nothing, she is also being seen tomorrw and I need prayers for it to be nothing.

These are 3 very very special girls to me and I hate that any of them have anything to deal with. Please keep them all in your prayers tonight. I will update tomorrow.

Keeping the positive light is a task but I have had all of this great Disney news to help add some balance. :upsidedow

Those Big Give ladies (and men!) do some fantastic sewing!

I will pray for all of the things you listed here! Keep us posted! :hug:

What date are you guys going to MVMCP?

[pipersmom]

I have thrilling news!!!! Ok first off, Alyssa was chosen for the BIG GIVE OMG WOOOOOHOOOO!!! We are so excited! :woohoo::woohoo: I have been a fan of their work since my 1st visit to the Dis. Second today I found out that are wish granted GOT US TICKETS TO MVMCP!!!! :banana::santa::banana::santa: I am loving life already right, I on a whim I decided to try my dining ressies again (I have none) I really wanted to get 1 at Ohana because of the wonderful things ive heard especially about the Gluten free options. I GOT IN!!!! I could not believe my eyes when the lil dot appeard. We will be there during wishes which I hear is a great view and they pipe in the music ahhhhhhh! What a great DAY!!!

Now I want to ask for prayers for my dear friend who will be giving birth any minute and she is only 28 weeks pregnant. She has been on bed rest in the hospital for 3 weeks with placental abruption trying to hold it off as long as possible. They both need prayers (shes having a lil girl) she will deliver today.

Also my oldest has been having some things come up and she is being seen in the morning but Im kinda scared. She has been having Ketones show up in her urine and this morning had very unusual stuff happening.

And then theres my sister and my best friend. She found a lump and Im scared but I know it will be nothing, she is also being seen tomorrw and I need prayers for it to be nothing.

These are 3 very very special girls to me and I hate that any of them have anything to deal with. Please keep them all in your prayers tonight. I will update tomorrow.

Keeping the positive light is a task but I have had all of this great Disney news to help add some balance. :upsidedow



Ohh..so excited you guys got chosen for the Big Give..and MVMCP!! Totally jealous..part of me is tempted to change our hopeful dates to Oct or Dec of 2010..but I could never wait that long!! :rotfl: You'll have to let us know how Ohana is with Wishes :goodvibes

So sorry that so many people close to you are going through things, will keep you guys in our thoughts....:hug:

[chrissid7]

Those Big Give ladies (and men!) do some fantastic sewing!

I will pray for all of the things you listed here! Keep us posted! :hug:

What date are you guys going to MVMCP?


Thank you!!! Oh My Gosh Alyssa flipped out. I was going to try to keep it a surprise but I was so excited I spilled the beans in less than 30 minutes lol!

We will be at MVMCP on Dec 11th!! Its a Friday so I know its going to be busy but It best fit the schedule I had already made.

Those ladies and men are so creative I swear. I really want to dust off the sewing machine. Alyssa got a sewing machine (nicer than mine, which is actually my sisters lol) during a hospital admission. Her grandmother (1 of the many) gave it to her and we didnt get a lot done with it but we are both excited to get going on it.

Hope you are well take care and thank you for the prayers! :hug:

[chrissid7]

My friend had her baby at 2:16 pm today and she weighs 2 lbs 6 ounces. They were just told that the baby has an infection and that the next 24 to 48 hours are critical. Please keep them in your prayers it does mean so much and she cannot have to many.

[yinyanggirls]

I can imagine your excitement! We are about 6months out and I'm going crazy. How exciting to be a month away!!! Be sure to post lots and lots of pics!

Positive thoughts and prayers going out to your family and friends. I hate that feeling that there is nothing you can do but wait. :grouphug:

[maroo]

My friend had her baby at 2:16 pm today and she weighs 2 lbs 6 ounces. They were just told that the baby has an infection and that the next 24 to 48 hours are critical. Please keep them in your prayers it does mean so much and she cannot have to many.

I will definitely be praying for her!

Feel free to post something on the Wish Trippers thread...Lots of people lurk on that thread (hence the 76,000 views :scared1:) and they would pray. We have some prayer warriors over there praying for all of the kids.

[chrissid7]

I can imagine your excitement! We are about 6months out and I'm going crazy. How exciting to be a month away!!! Be sure to post lots and lots of pics!

Positive thoughts and prayers going out to your family and friends. I hate that feeling that there is nothing you can do but wait. :grouphug:


Thank you so much and it is sooo exciting. I am glad that our dates were pretty quick because my patience are pretty rocky right now lol.

[chrissid7]

I will definitely be praying for her!

Feel free to post something on the Wish Trippers thread...Lots of people lurk on that thread (hence the 76,000 views :scared1:) and they would pray. We have some prayer warriors over there praying for all of the kids.

OMG Dont ask me how I forgot about posting on the wish trippers unite!!! OMG really?? what is wrong with me, that is the page that I saved to my favorites so I open it all the time sheeeesh im so glad you reminded me to SCROLL DOWN LMAO!

BTW My sisters lump was just that! THANK GOD! Nothing to be concerned about.

My daughter is still having isssues and today still had Ketones and now Protien in her urine :scared1: . Its freaking me out. They did more labs so hopefully we will find some answers soon. :headache:

My friends baby actually showed improvement last night and we are now over 36 hours and I have been begging God for her to be a miracle for this family. She is still critical but there is so much love for her I just hope she fights through this.

[pipersmom]

Keeping you in our thoughts and hoping they figure out what's going on with Hayley(sp?)..I know how frustrating that can be, and you surely don't need to go through all that again :hugs:

[maroo]

Don't worry about forgetting the Wish Trippers Unite thread...

It is sorta my baby - and on more than one occasion I have "unsubscribed" from it. It is easy to "hit" the wrong button on my iPhone and I have been known to unsubscribe from important threads (like pre-trip reports, the wish trippers thread...even my own trip reports!) :eek: Then I go days without even looking at it.

So no worries!

Thank God your sister is ok!! That is fantastic news. I work at an oncology clinic and we see the other side of those results all the time - so I think I worry more than most. Most of those do come back benign - thankfully!

I will continue to pray for your DD and your friends DD. :hug: Keep us posted on those two things, too.

[chrissid7]

I posted this on the WTU page but wanted to post here too for those that were praying for and with me.

Natalie Marie got her wings this evening :littleangel: . I am heart broken for my friends. I adore them am just prayed that they would get to keep their miracle here on earth and it was not to be :sad1: Please pray for their strenght and faith during this time. Thank you

[HeatherSue]

I posted this on the WTU page but wanted to post here too for those that were praying for and with me.

Natalie Marie got her wings this evening :littleangel: . I am heart broken for my friends. I adore them am just prayed that they would get to keep their miracle here on earth and it was not to be :sad1: Please pray for their strenght and faith during this time. Thank you

:sad1:Oh no...I'm so sorry. :sad2: I'm in tears thinking about what your friend must be going through tonight. I'll keep praying for her and her family, and for you. :hug:

[yinyanggirls]

I posted this on the WTU page but wanted to post here too for those that were praying for and with me.

Natalie Marie got her wings this evening :littleangel: . I am heart broken for my friends. I adore them am just prayed that they would get to keep their miracle here on earth and it was not to be :sad1: Please pray for their strenght and faith during this time. Thank you

That's the hardest thing to find words for. Nothing seems right. I hope they heal quickly and feel her near them always.

[kdzbear]

I posted this on the WTU page but wanted to post here too for those that were praying for and with me.

Natalie Marie got her wings this evening :littleangel: . I am heart broken for my friends. I adore them am just prayed that they would get to keep their miracle here on earth and it was not to be :sad1: Please pray for their strength and faith during this time. Thank you

I am so sorry to hear about the new little angel. I will say some prayers for everyone involved. Please let them know we are praying for them. :littleangel:

[chrissid7]

Thanks everyone! I had planned on sharing this link with them when we go on our trip and I know that Amy and her family will appreciate your kind words. Prayer for healing can make a huge difference. I appreciate all of you so much. :grouphug:

[pipersmom]

Piper got her pixie dust today from Alyssa and her friends and was absolutely thrilled ! The pictures the girl sent are gracing our refrigerator, and the bracelet immediately went onto her wrist. When we stopped at my mom's tonight, Piper was all about showing her the bracelet and explaining how Alyssa is "just like me"..I tell you I almost cried. She's very excited to write her back and said tonight "we can talk all about CF and I know she'll understand"...okay, and repeating that again just did make me misty. Anyway, thank you and Alyssa again, Chrissi, it means so much more than you might have expected. :lovestruc :love: :hug:

[chrissid7]

ok well maybe its not just you, your post just made me misty and when alyssa told the others what she was doing she spoke to them like she had known Piper her whole life, like i cant explain it was so casual and comfortable but with a sense of caring that made her want to make piper smile. She actually had the original piece or artwork on my desk and by God I forgot to put it in there and I got in huge trouble for that so another pic is on the way. Alyssa did ask me alot of questions. When I told her Piper was getting oxygen at home she was a lil jealous. She loves the oxygen blowing on her face and said she wishes they would let her sleep with it.

Today was a hard day for Alyssa because I waited untill this morning to tell her about our friends baby passing away yesterday. I just wanted her to sleep with out it clouding her mind. She was so excited about this baby girl and has been so worried. One of her good buddies was the big brother. She cries for him and then when she thinks of Amy (babies mom) she gets all teary. Alyssa has a doll (bitty baby) that she got when she was 2 and this doll does everything we do. She is as much a part of this family as we are lol.
She gets upset when the doll isnt treated right and sometimes I wonder if she realizes its a doll. Today she was looking at her doll across the room and she had a look on her face and a tear. She has so much love for people, and its showing more and more everyday. Im so proud yet hurt for her too.

OMG Ive written a book! :scared1: Ill talk to ya soon! lol!

btw my point was I think our girls have something that even with out words they just know. It makes me cry happy tears :lovestruc

[pipersmom]

ok well maybe its not just you, your post just made me misty and when alyssa told the others what she was doing she spoke to them like she had known Piper her whole life, like i cant explain it was so casual and comfortable but with a sense of caring that made her want to make piper smile. She actually had the original piece or artwork on my desk and by God I forgot to put it in there and I got in huge trouble for that so another pic is on the way. Alyssa did ask me alot of questions. When I told her Piper was getting oxygen at home she was a lil jealous. She loves the oxygen blowing on her face and said she wishes they would let her sleep with it.

I have to tell you, the first thing Piper looked for in the envelope was the the picture from Alyssa..she barely glanced at the others until after she had found hers! LOL @ the oxygen..only kids like ours could possibly have that reaction to medical-ish things. Piper asked quite a few about Alyssa as well..what her PFTs are, if she has lots of trouble with her lungs, etc. Piper was very excited when I told her Alyssa is DDF508! Like I said, only our kids..lol.

Today was a hard day for Alyssa because I waited untill this morning to tell her about our friends baby passing away yesterday. I just wanted her to sleep with out it clouding her mind. She was so excited about this baby girl and has been so worried. One of her good buddies was the big brother. She cries for him and then when she thinks of Amy (babies mom) she gets all teary. Alyssa has a doll (bitty baby) that she got when she was 2 and this doll does everything we do. She is as much a part of this family as we are lol.
She gets upset when the doll isnt treated right and sometimes I wonder if she realizes its a doll. Today she was looking at her doll across the room and she had a look on her face and a tear. She has so much love for people, and its showing more and more everyday. Im so proud yet hurt for her too.

I'm sorry you had to do that, I know it can't be an easy thing. Piper has yet to have anyone close to us pass away, but she is also very empathetic. Always wants to know what's wrong if she sees someone upset or crying, even if she doesn't know them. I feel the same way you do about it.

OMG Ive written a book! :scared1: Ill talk to ya soon! lol!

btw my point was I think our girls have something that even with out words they just know. It makes me cry happy tears :lovestruc

:hug:

[chrissid7]

It was a rough week and I hope that this week will get better, but I do have some good news too. I dont remember if I posted already i think I did some but anyways I was happy to snag Dinner at 50's Prime Time and dinner at Ohana earlier this week and I mean I am sooooo excited! I had hope to get just 1 more that Alyssa was interested in and I snatched a lunch up at

:worship: T_REX:worship: that makes me a happy lady! It worked out soo perfectly because it is for the day we leave and we had plenty of time to kill before our flight home so what a great way to leave.

Tonight we had our movie night. We watched The Fox and the Hound. Can you believe that I nor my sister in law have ever seen it??? I loved it so so so much! OMG I laughed and cried a lil when the lady left Tod in the woods ughhhh broke my heart. We ate all southern food, chicken mashed potatoes corn on the cob and we had Hound chow for snack. Hound chow is our version of puppy chow. Rice chex coated with chocolate and peanut butter then coated in powdered sugar.... its amazing and a favorite gluten free snack for us. Also if you use a pricey chocolate it has no artificial colors or flavors. Its very Alyssa friendly. :woohoo:

One of these days im going to get the pics of our dinners on here. Not nearly as fancy as some of the ones I ve seen on her but we love it!

Oh yeah and the girls made dog collars with tags on them. I had a bone shaped cookie cutter that they traced cut out and decorated then we ran a string through. So cute!

Only 4 movie nights left ! :santa:

We have decided that we enjoy this so much we will do it for the rest of our lives!!

[yinyanggirls]

The hound chow sounds yummy! I'll have to try it!

[pipersmom]

It was a rough week and I hope that this week will get better, but I do have some good news too. I dont remember if I posted already i think I did some but anyways I was happy to snag Dinner at 50's Prime Time and dinner at Ohana earlier this week and I mean I am sooooo excited! I had hope to get just 1 more that Alyssa was interested in and I snatched a lunch up at

:worship: T_REX:worship: that makes me a happy lady! It worked out soo perfectly because it is for the day we leave and we had plenty of time to kill before our flight home so what a great way to leave.

That is very cool! Aside from Akershus I'm not sure where we're going to end up eating, well..other than the fact I'm going to drag her to Margaritaville the day we go to Universal Studios..I love Buffett, and she's been listening with me forever, so I think she'll enjoy it. We don't have a T-Rex or Rainforest Cafe here, so we might try to hit RC the day we're at AK, though it will depend a lot on the budget at that point.

Tonight we had our movie night. We watched The Fox and the Hound. Can you believe that I nor my sister in law have ever seen it??? I loved it so so so much! OMG I laughed and cried a lil when the lady left Tod in the woods ughhhh broke my heart. We ate all southern food, chicken mashed potatoes corn on the cob and we had Hound chow for snack. Hound chow is our version of puppy chow. Rice chex coated with chocolate and peanut butter then coated in powdered sugar.... its amazing and a favorite gluten free snack for us. Also if you use a pricey chocolate it has no artificial colors or flavors. Its very Alyssa friendly. :woohoo:

One of these days im going to get the pics of our dinners on here. Not nearly as fancy as some of the ones I ve seen on her but we love it!

Oh yeah and the girls made dog collars with tags on them. I had a bone shaped cookie cutter that they traced cut out and decorated then we ran a string through. So cute!

Only 4 movie nights left ! :santa:

We have decided that we enjoy this so much we will do it for the rest of our lives!!

Aww, I loooove The Fox and the Hound, one of my all time fave Disney flicks. Your dinner sounds so cute, we make puppy chow (hound chow) too, and Piper loves it..of course, she loves anything chocolate..Mommy's girl, lol. I wanna see the pics! The dog collars sound cute too! :goodvibes Once Piper actually knows the trip dates, we're going to sit down and pick movies and make a schedule. It will give us something to look forward to every week, esp. with her being home all the time.

[chrissid7]

Aww, I loooove The Fox and the Hound, one of my all time fave Disney flicks. Your dinner sounds so cute, we make puppy chow (hound chow) too, and Piper loves it..of course, she loves anything chocolate..Mommy's girl, lol. I wanna see the pics! The dog collars sound cute too! :goodvibes Once Piper actually knows the trip dates, we're going to sit down and pick movies and make a schedule. It will give us something to look forward to every week, esp. with her being home all the time.

Well since we got our dates pretty quicky and we didnt have too long to wait it has been nice. The post Disney night thread and Bellas thread have all been helpful. You guys will have fun doing it! I either dont remember or I missed it but when were you going to surprise her? I soooo cant wait for that!! :cool1:

[pipersmom]

On Christmas day she's going to get a present with a letter from "Mickey" with the dates, a countdown chain (if I figure out how to make one without her seeing me do it!) and prob a little something from the Disney store or somewhere like that :)

[tricia]

Just subscribing.

How is Shayna doing? Any results from her labs?

[chrissid7]

On Christmas day she's going to get a present with a letter from "Mickey" with the dates, a countdown chain (if I figure out how to make one without her seeing me do it!) and prob a little something from the Disney store or somewhere like that :)

Oh my gosh that is going to be hard to do with her being home. Let me know if there is anything I could assemble and mail to ya. Maybe ribbon instead of paper that way it wouldnt get squished. What an awesome surprise for Christmas!!! :santa:

[chrissid7]

Just subscribing.

How is Shayna doing? Any results from her labs?

Shayna is still having some trouble, however she did finally get some relief from the pain when she had a bowel movement. The celiac panel came back negative (so did Alysa's but she has an obvious intollerance) . Her SED rate test also came back in normal range but her urine still has ketones and protein. I think we are going to be sent to an endocrinologist. They were waiting for 1 more test before they sent us, but I think im just going to move ahead. Im too scared to wait around. Ive seen what can happen and the doctors are living in my house so they dont see what I see.

Thank you for thinking of us and I will post more as soon as I know. For now im happy that she isnt crying everytime she uses the bathroom. :thumbsup2

[pipersmom]

Oh my gosh that is going to be hard to do with her being home. Let me know if there is anything I could assemble and mail to ya. Maybe ribbon instead of paper that way it wouldnt get squished. What an awesome surprise for Christmas!!! :santa:

Right now I'm thinking I'm going to d/l a countdown chain pattern from here and then take it to Staples or somewhere for copies (no color printer, lol) when my mom is watching her, then I can actually work on putting it together at night. The first couple yrs after I divorced she wasn't in school yet, so I figured out pretty quickly how much I can get done while she sleeps, lol.


Shayna is still having some trouble, however she did finally get some relief from the pain when she had a bowel movement. The celiac panel came back negative (so did Alysa's but she has an obvious intollerance) . Her SED rate test also came back in normal range but her urine still has ketones and protein. I think we are going to be sent to an endocrinologist. They were waiting for 1 more test before they sent us, but I think im just going to move ahead. Im too scared to wait around. Ive seen what can happen and the doctors are living in my house so they dont see what I see.

Thank you for thinking of us and I will post more as soon as I know. For now im happy that she isnt crying everytime she uses the bathroom. :thumbsup2

I don't blame you for wanting to move forward with the endo, it just isn't worth the stress wondering, IMO. Keeping positive thoughts going for her...

[chrissid7]

Thanks Amanda! It is amazing how speedy I become when Alyssa is out of the house or asleep too lol! Thats when I turn on my super powers teehee!

Ok so as of now here is the plan (subject to change) Each park has a list of must do's then the rest of the day is GRAVY.. do what we want


Dec 10... Arrive in Orlando get car head to Wal-mart, check in at GKTW by noon, have lunch, 3pm Orientation, and just hang out till CHRISTMAS!! :santa:

DEC 11... Eat breakfast @ GKTW then head to Seaworld untill 3 pm and then back to GKTW for late lunch and then off too MVMCP :santa:

DEC 12... Breakfast @ GKTW, Animal Kingdom, Flame tree Grill for Lunch, do must do's then head to Epcot till closing, see illuminations.

DEC 13.... Breakfast @ GKTW then off to Universal and Islands of adventure
Late dinner @ 9:30 at Ohana :cloud9:

DEC 14...Quick breakfast, be at Hollywood Studios for rope drop! :woohoo:
I finally got the ressie I wanted and we will be having diner @ 50's Prime Time @ 8:20 :woohoo:

DEC 15... Quick Breakfast, Rope drop at Magic Kingdom, Find and meet tink. We didnt make any ressies here because there are so many cs place that are gluten free, we just didnt want to waste a minute here, Alyssa has already had a couple of character meals here including CRT and CP on our first visit in April 08 ( I previously wrote 07, I cannot believe I messed that up, I guess it just seems so long ago lol).

Dec 16... Check out of GKTW head to Downtown Disney for lunch at T-Rex :dance3:
We plan on just spending the day at DTD until time to head to the airport, so we will have a full shopping day basically. We do want to go to Disney Quest and that will eat up some time.

Now lets see how well this works out lol! ONLY 31 DAY WOOOHOO:scared1:

[pacrosby]

Hey....I found you!

Your tentative schedule sounds great. What time are the rope drops? I forgot all about those. And Downtown Disney. I have to get that in there too. So much to do, so little time.

Pamela

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

[chrissid7]

Hey....I found you!

Your tentative schedule sounds great. What time are the rope drops? I forgot all about those. And Downtown Disney. I have to get that in there too. So much to do, so little time.

Pamela

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


yay! :yay: you found me!!!

They are different at each park but the ones that we will be trying to make are @ 9am (most all of the parks are opening @ 9am that whole week except a couple have extra magic hours but Im not sure if GKTW is included for those. I still dont know if we will fit it all in but we will try!! :scared1:

At least I have a goal on paper and I have to have that lol! :headache:

[yinyanggirls]

yay! :yay: you found me!!!

They are different at each park but the ones that we will be trying to make are @ 9am (most all of the parks are opening @ 9am that whole week except a couple have extra magic hours but Im not sure if GKTW is included for those. I still dont know if we will fit it all in but we will try!! :scared1:

At least I have a goal on paper and I have to have that lol! :headache:

I don't believe that GKTW guests are included in EMH. My understanding is it is for on-site guests only. I am reading a tour book right now (the Unofficial Guide to WDW) that strongly, and I mean strongly, recommends against going to a park early that just had it's EMH. Everybody that stayed at their hotels is going to go and the park is more crowded than usual. They recommend going to a completely different park that day. Something to keep in mind if you can work with the schedule.

[maroo]

I don't believe that GKTW guests are included in EMH. My understanding is it is for on-site guests only. I am reading a tour book right now (the Unofficial Guide to WDW) that strongly, and I mean strongly, recommends against going to a park early that just had it's EMH. Everybody that stayed at their hotels is going to go and the park is more crowded than usual. They recommend going to a completely different park that day. Something to keep in mind if you can work with the schedule.

This is very true.

If you guys have some sort of issue and really need to stay in a park a bit longer, I am willing to bet that Guest Relations would issue you guys a pass to stay for EMH. But generally guests of GKTW are not eligible for EMH.

Besides...GKTW has so many activities early in the morning and late at night that most families really prefer to stay away from them.

[maroo]

Thanks Amanda! It is amazing how speedy I become when Alyssa is out of the house or asleep too lol! Thats when I turn on my super powers teehee!

Ok so as of now here is the plan (subject to change) Each park has a list of must do's then the rest of the day is GRAVY.. do what we want


Thurs Dec 10... Arrive in Orlando get car head to Wal-mart, check in at GKTW by noon, have lunch, 3pm Orientation, and just hang out till CHRISTMAS!! :santa:

Fri DEC 11... Eat breakfast @ GKTW then head to Seaworld untill 3 pm and then back to GKTW for late lunch and then off too MVMCP :santa:

Sat DEC 12... Breakfast @ GKTW, Animal Kingdom, Flame tree Grill for Lunch, do must do's then head to Epcot till closing, see illuminations.

There will be a group of DISers from the Podcast team volunteering at GKTW on this morning. Say hello to them and let them know I sent ya and thank them for coming out to volunteer! Make sure you tell them you are DISer! :)

AK should be good park for this day. And Epcot is the BEST park according to touringplans.com

Sun DEC 13.... Breakfast @ GKTW then off to Universal and Islands of adventure
Late dinner @ 9:30 at Ohana :cloud9:

Great idea to do a meal at a resort. Doesn't use up a ticket! Are you guys planning to go to the Candyland Party at GKTW- I hear that is a good party! And you should be able to make your ressie. :)

Mon DEC 14...Quick breakfast, be at Hollywood Studios for rope drop! :woohoo:
I finally got the ressie I wanted and we will be having diner @ 50's Prime Time @ 8:20 :woohoo:

DHS looks like a good choice for a park! One thought...don't worry about getting in the rush to go to Toy Story. You will have the button - so it will be your FP all day...so you can avoid the crowds, if you want and do something else early to stay away from the crowds. :) Of course, if running to Toy Story sounds fun - go for it! I enjoy it! And I LOVE 50's Prime Time!

Tues DEC 15... Quick Breakfast, Rope drop at Magic Kingdom, Find and meet tink. We didnt make any ressies here because there are so many cs place that are gluten free, we just didnt want to waste a minute here, Alyssa has already had a couple of character meals here including CRT and CP on our first visit in April 08 ( I previously wrote 07, I cannot believe I messed that up, I guess it just seems so long ago lol).

Ask a CM what you would need to do to wake up Tinkerbell! I bet they would let you guys do it! :) :goodvibes

Wed Dec 16... Check out of GKTW head to Downtown Disney for lunch at T-Rex :dance3:
We plan on just spending the day at DTD until time to head to the airport, so we will have a full shopping day basically. We do want to go to Disney Quest and that will eat up some time.

This sounds like fun! Ask at GKTW to see if you guys get free tickets to Disney Quest. It is possible that they have some. You guys would be the first wish family that I know of going...I would love to hear a report about how that goes and how they recognize you guys as a wish family.

Now lets see how well this works out lol! ONLY 31 DAY WOOOHOO:scared1:

Here are the crowd scores and such...



Date crowd score best park worst park
Fri, 11 Dec '09 4 DS EP
Sat, 12 Dec '09 7 EP DS
Sun, 13 Dec '09 4 AK EP
Mon, 14 Dec '09 6 EP MK AK
Tue, 15 Dec '09 5 AK MK EP
Wed, 16 Dec '09 7 MK EP DS AK
Thu, 17 Dec '09 5 AK MK EP DS
Fri, 18 Dec '09 5 DS EP

Your plans look great!

[chrissid7]

OMG MAROO! YOU ARE AWESOME! Ok so im giving myself a lil pat on the back because all in all I think I picked good park days. I didnt even have the rated thingy, but now looking at it Im impressed thanks again Maroo!

[chrissid7]

I just looked up the Wakeing up Tink you mentioned.OMG Alyssa would love love love love it!!! I am all over that now! I will be sure to let every cm we see know and we shal FLY to the store heehee.

We will most certainly pop in to say hello to all of the Podcast team!! How cool that we will all be there!! :banana:

I cant seem to get anything done..... what is wrong with me?? I cant get off of this site!:surfweb:

[maroo]

I just looked up the Wakeing up Tink you mentioned.OMG Alyssa would love love love love it!!! I am all over that now! I will be sure to let every cm we see know and we shal FLY to the store heehee.

We will most certainly pop in to say hello to all of the Podcast team!! How cool that we will all be there!! :banana:

I cant seem to get anything done..... what is wrong with me?? I cant get off of this site!:surfweb:

I am going to try to remind the folks on the Podcast board that we will have several families there...so hopefully they will be on the lookout!

They will probably have shirts that have an orange USB port on there...the DIS Unplugged logo...

I will ask them.

I was supposed to be there.....:sad: till I got H1N1 and missed days of work... :(

You and me, both! I have been on here all day today! At this rate I will be at work till 6 tonight (supposed to get off at 3:30)! :faint:

[chrissid7]

I will be on the lookout!!

Yeah Im supposed to be hosting a kitchen party this weekend (trying to convert my kitchen to all gluten free, so hosting a show will help me save $$)
but I have so much to do to be ready, and i cant stop reading lol!


oh my let me get off my butt!

This house wont clean itself!

[pipersmom]

Woohoo, you got it to work! Don't know if that last pm helped or hurt, lmbo. Send me the link to the Pampered Chef sight please, I can do some Christmas shopping and you can get the credit!

I know what you mean about the Dis addiction thing, I play while Piper does schoolwork, and I should be cleaning too!

[chrissid7]

Woohoo, you got it to work! Don't know if that last pm helped or hurt, lmbo. Send me the link to the Pampered Chef sight please, I can do some Christmas shopping and you can get the credit!

I know what you mean about the Dis addiction thing, I play while Piper does schoolwork, and I should be cleaning too!

Ok im not Dis'ing anymore till after dinner lol!! Alyssa is doing her school work now so I just figured wellllll ya know lol!



Thanks a bunch!:hug:

[pacrosby]

You guys are making me laugh about not being able to get off these boards.........ME TOO!!! This is really the reason why I don't have internet access at home anymore (I'm now using dh's work computer he brought home and pirating off of a neighbor's wireless......I know baaaaaaaad, baaaaaaaaad baby). Truth be told I have an addictive personality. I found that I had a tendency to get sucked in years ago when we had access and spent waaaaaaaaay too much time :surfweb: (although that cup of coffee needs to be replaced with a nice freezing cold can of COKE). The ONLY way I could be sure I wouldn't waste the day away was by pulling the plug:sad1: I have NO self control LOL

Pamela :santa:

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

[pipersmom]

You guys are making me laugh about not being able to get off these boards.........ME TOO!!! This is really the reason why I don't have internet access at home anymore (I'm now using dh's work computer he brought home and pirating off of a neighbor's wireless......I know baaaaaaaad, baaaaaaaaad baby). Truth be told I have an addictive personality. I found that I had a tendency to get sucked in years ago when we had access and spent waaaaaaaaay too much time :surfweb: (although that cup of coffee needs to be replaced with a nice freezing cold can of COKE). The ONLY way I could be sure I wouldn't waste the day away was by pulling the plug:sad1: I have NO self control LOL

Pamela :santa:

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

I vote we give you permission to indulge your internet cravings until after your wish trip...:goodvibes I will admit to spending way too much time as well. I'm going to have to do a few web-free days in the near future..though maybe not all in a row...:laughing:

[chrissid7]

You guys are making me laugh about not being able to get off these boards.........ME TOO!!! This is really the reason why I don't have internet access at home anymore (I'm now using dh's work computer he brought home and pirating off of a neighbor's wireless......I know baaaaaaaad, baaaaaaaaad baby). Truth be told I have an addictive personality. I found that I had a tendency to get sucked in years ago when we had access and spent waaaaaaaaay too much time :surfweb: (although that cup of coffee needs to be replaced with a nice freezing cold can of COKE). The ONLY way I could be sure I wouldn't waste the day away was by pulling the plug:sad1: I have NO self control LOL

Pamela :santa:

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

I vote we give you permission to indulge your internet cravings until after your wish trip...:goodvibes I will admit to spending way too much time as well. I'm going to have to do a few web-free days in the near future..though maybe not all in a row...:laughing:


I am sooo bad right now I swear my family must think ive gone mad! Now I have always spent a lot of time on the computer because I have been working from home for a long time and when Im not working Im researching so my kids know, but I have an addictive personality too (I believe ive talked about it here before lol) and 2 of my best buddies Penny and Amy got me hooked on farmville on facebook too OMG! :scared1: I think I am going to have to set myself up on a schedule..... what?? Did I just say the S word?? Yep fraid so! :laundy: ohhhhh not good lol!

But I am way more hooked on these boards than farmville but I am so competetive that I have got to beat that game! Guess what.... I dont think ya can, looks to me like it just might go on forever! I might need an intervention guys, whos gonna be checking in on me lol? :rolleyes1

[pipersmom]

I am sooo bad right now I swear my family must think ive gone mad! Now I have always spent a lot of time on the computer because I have been working from home for a long time and when Im not working Im researching so my kids know, but I have an addictive personality too (I believe ive talked about it here before lol) and 2 of my best buddies Penny and Amy got me hooked on farmville on facebook too OMG! :scared1: I think I am going to have to set myself up on a schedule..... what?? Did I just say the S word?? Yep fraid so! :laundy: ohhhhh not good lol!

But I am way more hooked on these boards than farmville but I am so competetive that I have got to beat that game! Guess what.... I dont think ya can, looks to me like it just might go on forever! I might need an intervention guys, whos gonna be checking in on me lol? :rolleyes1

Ermm..I'll intervene, but first I have to harvest my flowers, milk my cows, and figure out what to do with the Halloween decorations I bought for my farm..don't wanna sell 'em and lose all that money! :rolleyes1

[chrissid7]

LMAO!!! well I dont think we are going to be any good together tee hee too funny I am cracking up!



Ermm..I'll intervene, but first I have to harvest my flowers, milk my cows, and figure out what to do with the Halloween decorations I bought for my farm..don't wanna sell 'em and lose all that money! :rolleyes1

[yinyanggirls]

I just looked up the Wakeing up Tink you mentioned.OMG Alyssa would love love love love it!!! I am all over that now! I will be sure to let every cm we see know and we shal FLY to the store heehee.

We will most certainly pop in to say hello to all of the Podcast team!! How cool that we will all be there!! :banana:

I cant seem to get anything done..... what is wrong with me?? I cant get off of this site!:surfweb:

Ummm, you don't have to give anything away, but at least tell me where to search. Where do I find waking up Tink?

At least you guys aren't on after midnight...:rolleyes1

[pipersmom]

Ummm, you don't have to give anything away, but at least tell me where to search. Where do I find waking up Tink?

At least you guys aren't on after midnight...:rolleyes1

:rotfl: It was after midnight, silly! You have the time difference advantage though, LOL!

You wake up Tink at one of the gift shops in Fantasyland(I think) and I believe the name of it is Tink's Treasures..something very close to that, anyway. The first child in after rope drop gets to do it, though I plan on coercing someone to make sure Piper gets to, lol.

[maroo]

Well...

All I can add...

Is that some of us never leave after our wish trips...:rolleyes1

And spend hours on here FOREVER..........

[pipersmom]

Well...

All I can add...

Is that some of us never leave after our wish trips...:rolleyes1

And spend hours on here FOREVER..........

Oh heavens, I can see it all now..Piper at 30 showing up at my door with a shovel, 18 boxes of trash bags, a dump truck and a cleaning crew...

"Well..it all started when I got to go on a wish trip......"

:laughing:

[chrissid7]

Ummm, you don't have to give anything away, but at least tell me where to search. Where do I find waking up Tink?

At least you guys aren't on after midnight...:rolleyes1

Imm not sure if you are allowed to post links to other sites here so i wont but Ill tell you that yesterday I G-searched (hope ya know what the g stands for) waking up tinkerbell Disney world and found a great site that tell several things Ive never heard of, like also trying to find paintbrushes on Tom Sawyers island the the CM drop all over the island. If you find on take it to a cm for a front row seat! (our wish kids would probably get that anyways but how fun to try and find one). So now my plan of attack is to get to wake tink and RUN RUN to Tom Sawyers island! There were also lil other tid bits that I found awesome on that site. :banana:

My ticker doesnt have months anymore!!!!!!:scared1::santa::scared1::santa:

[chrissid7]

Well...

All I can add...

Is that some of us never leave after our wish trips...:rolleyes1

And spend hours on here FOREVER..........


Oh girl I am sooooo now a permant fixture on here! I will not be able to plan a trip for a long time, but I cant wait to read all the other and help along the way if I can!

Im hooked ;)

You have a new partner in crime lmbo!

[chrissid7]

Oh heavens, I can see it all now..Piper at 30 showing up at my door with a shovel, 18 boxes of trash bags, a dump truck and a cleaning crew...

"Well..it all started when I got to go on a wish trip......"

:laughing:


I can also see Alyssa and Piper now writing each other "Dear Piper, My mom is still on the computer and our trip ended a year ago. How is your mom have you been able to go to the grocery store this month? I remember when we used to do laundry and stuff, it was nice" HAHAHA:rotfl2:

[pipersmom]

I can also see Alyssa and Piper now writing each other "Dear Piper, My mom is still on the computer and our trip ended a year ago. How is your mom have you been able to go to the grocery store this month? I remember when we used to do laundry and stuff, it was nice" HAHAHA:rotfl2:

LOL! I almost feel sorry for our kids..(note I say..almost)!

[maroo]

Oh heavens, I can see it all now..Piper at 30 showing up at my door with a shovel, 18 boxes of trash bags, a dump truck and a cleaning crew...

"Well..it all started when I got to go on a wish trip......"

:laughing:

I think my family would show up with lighter fluid and a match! :rotfl2:

Imm not sure if you are allowed to post links to other sites here so i wont but Ill tell you that yesterday I G-searched (hope ya know what the g stands for) waking up tinkerbell Disney world and found a great site that tell several things Ive never heard of, like also trying to find paintbrushes on Tom Sawyers island the the CM drop all over the island. If you find on take it to a cm for a front row seat! (our wish kids would probably get that anyways but how fun to try and find one). So now my plan of attack is to get to wake tink and RUN RUN to Tom Sawyers island! There were also lil other tid bits that I found awesome on that site. :banana:

My ticker doesnt have months anymore!!!!!!:scared1::santa::scared1::santa:

You can post links to other sites as long as you are not selling anything. I also would refrain from posting links to other Travel Agents besides Dreams Unlimited Travel. But you can post informational sites and blogs about Disney all day long! :thumbsup2

Oh girl I am sooooo now a permant fixture on here! I will not be able to plan a trip for a long time, but I cant wait to read all the other and help along the way if I can!

Im hooked ;)

You have a new partner in crime lmbo!

Woo HOO!! :woohoo: :yay: :cool1: :dance3: :cheer2:

[chrissid7]

Oh My Goodness!!!! How lucky am I??? I realized that I had gotten the 50's prime Time ressie that I wanted but I didnt even think about the fact that it was during the Block Party Bash!!! OOOOOO NOOOOOO :sad2:. That was 1 of the best parts of our 1st visit to Disney... again we were only there for 3 days but we loooooved this parade! So I decided that all I could do was keep trying for later in the day. OH YEAH!!! I got 1 at 8:20 pm !!!!:yay::yay:

[cajunfan]

Hi folks! Been reading the trippies today (avoiding work!).

My 2 cents on the waking Tink thing...do they still do it since they have expanded the BBB? Also do not tell the kids about it, as it is very hard to do, and they will be very disappointed if they can not do it. (I have read trip reports where parents had knocked down others and others that became very beligerant(sp?) if their child did not get to "wake" Tink.) Definitely look for some current information...as my memory of these trip reports are probably at least a year or so old...

Lynn

[kdzbear]

Waking up Tink can now be done anytime of day. We did it at 2:30 on our last trip. I thought they were just being nice, but when I returned home I read on Disboards that they let any child that asks now wake up Tink anytime of day! It can still be special, but you do not need to run there first thing! :tinker::tinker:

[chrissid7]

Hi folks! Been reading the trippies today (avoiding work!).

My 2 cents on the waking Tink thing...do they still do it since they have expanded the BBB? Also do not tell the kids about it, as it is very hard to do, and they will be very disappointed if they can not do it. (I have read trip reports where parents had knocked down others and others that became very beligerant(sp?) if their child did not get to "wake" Tink.) Definitely look for some current information...as my memory of these trip reports are probably at least a year or so old...

Lynn

Thats funny that you said dont tell the kids because thats what I was thinking. It is very likely that we will get beat there, so if we make it it would be a nice surprise, but I certainly dont want a disappointment as soon as we get there. that would not be good. Its just so hard to imagine that mothers would behave like brats in front of their kids at the most magical place on earth. I think I would just have to get all up in their face.... and give the a big ole smile!!! lol thats it just a big A** grin!:rotfl: I think that would impress my kids!

[chrissid7]

Waking up Tink can now be done anytime of day. We did it at 2:30 on our last trip. I thought they were just being nice, but when I returned home I read on Disboards that they let any child that asks now wake up Tink anytime of day! It can still be special, but you do not need to run there first thing! :tinker::tinker:



I will keep that in mind maybe if things look to crazy we will just shoot for later inthe day. Thank you for sharing that!:hug:

[yinyanggirls]

My ticker doesnt have months anymore!!!!!!:scared1::santa::scared1::santa:


WOOHOOOOOO!:cheer2:

[cajunfan]

I am glad to hear that about Tink!

[pipersmom]

Hooray for PrimeTime! And...down to weeks..just think, before you know it, it'll be days...then hours!! :dance1:

[maroo]

wow. I didn't realize it about Tink!

What happens when you "wake Tink?"

Ellie may want to do that this trip?

[kdzbear]

wow. I didn't realize it about Tink!

What happens when you "wake Tink?"

Ellie may want to do that this trip?

Do not read if you don't want to hear about How the Wake Up Tink works!




You go into the Tinkerbell's Treasures store and ask to wake up Tink. The cast member will give you a little bell to ring. The child rings the bell and on a screen behind the register pixie dust begins to appear followed by a large Tinkerbell. She does not stay on the screen very long. Then I guess it is reset and ready for the next child. It is cute! :tink:

[pacrosby]

Awwwwwwww Makes me long for the days when my little girl was, well......little. She's too old for that now:sad1:

And, of course, Matty and his brothers could give a hoot:sad2:

Pamela:santa:

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

[chrissid7]

Do not read if you don't want to hear about How the Wake Up Tink works!




You go into the Tinkerbell's Treasures store and ask to wake up Tink. The cast member will give you a little bell to ring. The child rings the bell and on a screen behind the register pixie dust begins to appear followed by a large Tinkerbell. She does not stay on the screen very long. Then I guess it is reset and ready for the next child. It is cute! :tink:


OMG I know Alyssa would love it!!! Im going to do my very best!! thanks for the info, Im not going to tell her just in case but Im going to give it my best shot.:cheer2:

[chrissid7]

Awwwwwwww Makes me long for the days when my little girl was, well......little. She's too old for that now:sad1:

And, of course, Matty and his brothers could give a hoot:sad2:

Pamela:santa:

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

I dont think she's too old at all as a motter of fact i dont think im too old teeheehee! Maybe if you tell her you are going to wake tink she will want to do it instead lol! :goodvibes

[pipersmom]

I'm not too old either, Chrissi..and I'm with you, Piper will love it too. Yanno...You should think about postponing your trip until March.. *nodnod* LMAO

[chrissid7]

I'm not too old either, Chrissi..and I'm with you, Piper will love it too. Yanno...You should think about postponing your trip until March.. *nodnod* LMAO


thats funny you mention postponing because the other day I was thinking how nice it would be if we had ended up on the same week!! Maybe I will have to hurry and hit the lotto and just plan another trip you yall have your dates hmmmmm now if only i knew what #'s were going to come out! lol!

[pipersmom]

You can't hit the lotto silly, think of all the meds and appts and hospital stays you'd have to pay for out of pocket! The only one I mess with is MegaMillions occasionally, with the plan of giving the ticket to my Mom and then getting lots of "gifts" from her! :rotfl:

[chrissid7]

You can't hit the lotto silly, think of all the meds and appts and hospital stays you'd have to pay for out of pocket! The only one I mess with is MegaMillions occasionally, with the plan of giving the ticket to my Mom and then getting lots of "gifts" from her! :rotfl:


Well see if we hit the lotto, my husband and I have a plan already lol. He will keep his job but only work the minium required, he has time built up so he would just take off a couple of months so that we could splurge and travel (to Disney of course) but we know that without his insurance all of our winnings would only cover medical lol what a shame huh?

The 1 problem with this plan is that we never play the megamillions unless its way up there so our odds re pretty slim LOL! :confused:

[pipersmom]

Well see if we hit the lotto, my husband and I have a plan already lol. He will keep his job but only work the minium required, he has time built up so he would just take off a couple of months so that we could splurge and travel (to Disney of course) but we know that without his insurance all of our winnings would only cover medical lol what a shame huh?

The 1 problem with this plan is that we never play the megamillions unless its way up there so our odds re pretty slim LOL! :confused:

What is hilarious to me is that we've had to sit down and think about things like that! I'm the same way with lotto tix, I might play 2x yearly when it's over about 200 mil..odds would be much better on the smaller jackpots!

[chrissid7]

Well I havent been able to post a whole lot but I did want to update a few things. Sunday we had a wonderful Disney night. We watched Cinderella. princess: We ate princess food (small burgers, meatballs) we had mouse food for Jaq and Gus (veggie try with dip in a carved out pumpkin with carrot wheels, an idea we borrowed from bellas trip report) We had asparaGUSGUS (ive never eatn it before but I really enjoyed it) Kara also convinced me to try an artichoke, which I ve never eaten either I kinda liked it, but it was unusual. For dessert we had Cindereallas castle which was a CHOCOLATE FOUNTAIN WEEEEEEEE!!!! We had marshmallows, pretzels, strawberries and bananas dipping in th fountain. The girls were so excited when we surprised them with that. It was great fun. Our cousin joined in on the fun, she is the Disney movie guru as I call her lol.

Now onto funky news. I think i am going to have to take Alyssa in tomorrow to be admitted. We can both tell that she is not doing so well. We really hoped she was going to kick this lil bug on her own but she is having a rough time and I dont think we should wait any longer. I migh t be wrong and they may send us home but I doubt it. I wish I could talk her into getting a picc line so that we could be home but she is not going to have it im sure.

So it looks like we will be doing the rest of the planning from the hospital. With only 3 weeks and 3 days left, im a little stressed. I just hate seeing her start t feel so bad and Im always on the verge of tears everytime we do PFT's because I know she is so close to the bottom of the chart. It just hurts sometimes ya know?

I just thank God and I know that we will get through this! God is good and I know she is going to get better, I just know it!!!

[rie'smom]

My thoughts and prayers are with Alyssa and your family.

[HeatherSue]

I'll be praying for Alyssa, and for you. :hug:

[pipersmom]

Well I havent been able to post a whole lot but I did want to update a few things. Sunday we had a wonderful Disney night. We watched Cinderella. princess: We ate princess food (small burgers, meatballs) we had mouse food for Jaq and Gus (veggie try with dip in a carved out pumpkin with carrot wheels, an idea we borrowed from bellas trip report) We had asparaGUSGUS (ive never eatn it before but I really enjoyed it) Kara also convinced me to try an artichoke, which I ve never eaten either I kinda liked it, but it was unusual. For dessert we had Cindereallas castle which was a CHOCOLATE FOUNTAIN WEEEEEEEE!!!! We had marshmallows, pretzels, strawberries and bananas dipping in th fountain. The girls were so excited when we surprised them with that. It was great fun. Our cousin joined in on the fun, she is the Disney movie guru as I call her lol.

Ohh..chocolate fountain, I love it !:love: It sounds like an awesome night!


Now onto funky news. I think i am going to have to take Alyssa in tomorrow to be admitted. We can both tell that she is not doing so well. We really hoped she was going to kick this lil bug on her own but she is having a rough time and I dont think we should wait any longer. I migh t be wrong and they may send us home but I doubt it. I wish I could talk her into getting a picc line so that we could be home but she is not going to have it im sure.

So it looks like we will be doing the rest of the planning from the hospital. With only 3 weeks and 3 days left, im a little stressed. I just hate seeing her start t feel so bad and Im always on the verge of tears everytime we do PFT's because I know she is so close to the bottom of the chart. It just hurts sometimes ya know?

I just thank God and I know that we will get through this! God is good and I know she is going to get better, I just know it!!!

Oh geez hon, so sorry you're having to go through that. They've never mentioned putting in a port for Alyssa? If she's in more than 2-3 times a year for IV's, I'd ask about it..she'd be completely out, so I wouldn't think she'd object too much? They can do the blood draws and everything right off it as well. Piper always preferred a PICC 'cause she knew it would be less sticks.
I do know what you mean about the PFT's..I have broken down a couple times (outside of Piper's presence) talking to the Dr afterwards..of course the Dr looked at me like I was nuts, but that's nothing new, lol. You have my # if you need to talk please call! :hug:

[maroo]

Well I havent been able to post a whole lot but I did want to update a few things. Sunday we had a wonderful Disney night. We watched Cinderella. princess: We ate princess food (small burgers, meatballs) we had mouse food for Jaq and Gus (veggie try with dip in a carved out pumpkin with carrot wheels, an idea we borrowed from bellas trip report) We had asparaGUSGUS (ive never eatn it before but I really enjoyed it) Kara also convinced me to try an artichoke, which I ve never eaten either I kinda liked it, but it was unusual. For dessert we had Cindereallas castle which was a CHOCOLATE FOUNTAIN WEEEEEEEE!!!! We had marshmallows, pretzels, strawberries and bananas dipping in th fountain. The girls were so excited when we surprised them with that. It was great fun. Our cousin joined in on the fun, she is the Disney movie guru as I call her lol.

Ok...this sounds like SO MUCH FUN! And that chocolate fountain......... YUM!

Now onto funky news. I think i am going to have to take Alyssa in tomorrow to be admitted. We can both tell that she is not doing so well. We really hoped she was going to kick this lil bug on her own but she is having a rough time and I dont think we should wait any longer. I migh t be wrong and they may send us home but I doubt it. I wish I could talk her into getting a picc line so that we could be home but she is not going to have it im sure.

:mad: :mad: :mad: That is horrible! I am so sorry. Hopefully they can get her situtated soon and feeling much better! I agree you guys should ask about getting a port put in...I talked to Lucas last night (one of the DIS wish kids) and he just got his out - but he LOVED his - no more sticks for IV's, etc.

So it looks like we will be doing the rest of the planning from the hospital. With only 3 weeks and 3 days left, im a little stressed. I just hate seeing her start t feel so bad and Im always on the verge of tears everytime we do PFT's because I know she is so close to the bottom of the chart. It just hurts sometimes ya know?

:grouphug: Big hugs to you. I am so, so sorry.

I just thank God and I know that we will get through this! God is good and I know she is going to get better, I just know it!!!

I will be praying for you guys!!! Hang in there and keep us posted.

[chrissid7]

Thanks everyone! The office was full today so we are going to go in tomorrow at 1:30, so for today we are going to do intense therapy and just keep the antibiotics flowing by mouth.

I have actually been thing a lot about the port for over a year now. When Alyssa got the feeding tube in August I asked about it then, but because she was so sick then they didnt want to risk longer sedation and more infection exposure. They wanted to wait until she is a lil healthier. We I wouldnt want to do it this visit if she ends up being admitted because we are only 3 weeks from Disney and I just dont want her to be sore or "protective" She tends to Protect things for months meaning she wont let you come near a site (Ivs, injection sites, g-tube) she stays so tense. Maybe on the next visit but she keeps saying no! She is so sweet and sensitive until it comes to her care lol then she is the boss. I love it that she has opinions about it and that she is very involved, she needs to be.

[pipersmom]

They wouldn't implant it this visit anyway with her being sick unless they couldn't get an IV or PICC going. Keeping my fingers crossed and praying for you guys! At least you get time to get everything together. (I tend to pack a hospital bag when I think we'll get admitted, lol).

[chrissid7]

They wouldn't implant it this visit anyway with her being sick unless they couldn't get an IV or PICC going. Keeping my fingers crossed and praying for you guys! At least you get time to get everything together. (I tend to pack a hospital bag when I think we'll get admitted, lol).

The thing that worries me everytime too is that one day they are not going to get 1 going. She already has about used up all of her veins. It gets harder and harder. We keep a bag packed that has her art supplies, my lil coffee pot, shower stuff, extra slippers for her, a universal remote (the one on the bed stinks and they never have any universals) we actually have the codes now to all of the tv's and dvd players on 1 lil sticker. Just odd and end things that we have figured we need on each trip so we just keep it in that bag by the way that bag has wheels which was also planned after too many sore backs and shoulders lol.

Im a lil bit ocd when it comes to stuff I guess but this is our life and we need it simplified however possible as you know too well.

[kdzbear]

I am praying that Alyssa is ok when you take her to the doctor today! :grouphug:

[pipersmom]

The thing that worries me everytime too is that one day they are not going to get 1 going. She already has about used up all of her veins. It gets harder and harder. We keep a bag packed that has her art supplies, my lil coffee pot, shower stuff, extra slippers for her, a universal remote (the one on the bed stinks and they never have any universals) we actually have the codes now to all of the tv's and dvd players on 1 lil sticker. Just odd and end things that we have figured we need on each trip so we just keep it in that bag by the way that bag has wheels which was also planned after too many sore backs and shoulders lol.

Im a lil bit ocd when it comes to stuff I guess but this is our life and we need it simplified however possible as you know too well.

You know I've never thought about taking a small coffee pot! Instead I go and complain about the crappy coffee and splurge once every couple of days at the gourmet coffee stand! Guess what's on my next shopping list now? LOL.

As to the IV/PICC thing..watching Piper get PICCs placed has always been one of the hardest things for me, simply because they can't knock her all the way out, and they could never get it on the first try. Right before they finally placed the port I watched them try...8 or 9(!!) times in one go. They couldn't get one placed and the tears were just rolling down my face from watching her have to go through that. I totally get where you're coming from. Keeping you guys in my prayers and hoping you get a really good person placing the IV!

[yinyanggirls]

The thing that worries me everytime too is that one day they are not going to get 1 going. She already has about used up all of her veins. It gets harder and harder. We keep a bag packed that has her art supplies, my lil coffee pot, shower stuff, extra slippers for her, a universal remote (the one on the bed stinks and they never have any universals) we actually have the codes now to all of the tv's and dvd players on 1 lil sticker. Just odd and end things that we have figured we need on each trip so we just keep it in that bag by the way that bag has wheels which was also planned after too many sore backs and shoulders lol.

Im a lil bit ocd when it comes to stuff I guess but this is our life and we need it simplified however possible as you know too well.

Chrissi, I'm so sorry she's sick and needs to go in. I can imagine her being sensitive about new "things".
Growing up my family was very healthy, no hospital stays or illnesses. When Phoebe had to stay in the hospital after she was born (about 2 weeks) my hatred of hospitals began. Most of the people are wonderful, so it's not that, but I just hate not having all the comforts of home, being interrupted every hour to have her poked and prodded, etc. The worst ever time was when she was 4 months old and had RSV and her sats were in the 70s when I took her in! They told me she should have been blue, but for some reason wasn't. Anyway, she was sick, I was sick (probably with the same virus), we were out of state so DH couldn't trade with me, I didn't want any relatives to get it so they stayed away too, and I was having my period that week. I had no idea she was so sick and would be admitted so for the first two days I had nothing personal with me. No change of clothes, no comfort items. It was the worst. Thankfully we have only had a handful of stays since then. You sound like you are an expert by now, so at least you have learned to cope with some of the inconveniences. I hope this stay is one of her better and shorter ones. Keep us posted!:sick:

[maroo]

Praying for you guys tonight!

I hope that you are home - but praying for you either way!

[chrissid7]

You know I've never thought about taking a small coffee pot! Instead I go and complain about the crappy coffee and splurge once every couple of days at the gourmet coffee stand! Guess what's on my next shopping list now? LOL.

As to the IV/PICC thing..watching Piper get PICCs placed has always been one of the hardest things for me, simply because they can't knock her all the way out, and they could never get it on the first try. Right before they finally placed the port I watched them try...8 or 9(!!) times in one go. They couldn't get one placed and the tears were just rolling down my face from watching her have to go through that. I totally get where you're coming from. Keeping you guys in my prayers and hoping you get a really good person placing the IV!

OMG thats crazy, I know exactly how you feel. We watch them try and try and try some more to get Alyssa's picc. Twice we watched her quit breathing and they had to intebate her right in front of us. All I could do was beg them to stop and the just cry. They got it on the attempt that I demanded they stop, but the doctor snapped and said and this is why I dont like parents in the room, my reply was "why so that you can think that you are so effin great when you finalyl get one but the child will be in so much pain from the 40 cuts you just gave her that she will lay on ice packs for the next 4 days...I dont think so, yea great job!!... I dont think so!"

she later came and appologized and I really felt like he was sincere as she almost cried when she said as a parent she cannot imagine how hard that must have been and that she was frustrated as a physician because she knew how important it was and didnt want all of that to be for nothing.

Now Alyssa can only get them if she is fully sedated so she has to go through interventional radiology because she does quit breathing every time. It a nightmare and that is why Alyssa insists on IV's. She says she would rather get 50 iv's than 1 picc line. She has just been traumatized by the events around it.

Poor Piper I just really want to hug her and you both....ughhhh sometimes you feel like the only person on the planet that deals with this crap, but I hate it that im not the only one because it just means more kids dealing with CRAP!!

Im getting really stressed tonight beause I know tomorrw is going to be rough as it is every clinic day.:sad2:

[chrissid7]

Thanks Melissa and Maroo!! I will update as soon as we get the word tomorrow. Prayers are soooooooooo appreciated!!

[chrissid7]

I am praying that Alyssa is ok when you take her to the doctor today! :grouphug:

I will be going at 1pm tomorrow (well today now) and will post asap. Thank you so much!

[pacrosby]

Good thoughts and prayers coming your way.:grouphug:

Pamela:santa:

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

[maroo]

Praying!!! :grouphug: :grouphug: :grouphug: :grouphug:

[chrissid7]

Thanks everyone for your prayers and I would like to ask you to continue with them. It wasnt a good appointment :sad2:

Her pft's were only at 32% and that makes me feel like crap just saying it! I am terrified and I can t even show it. I know that she is going to get better!!! I know it because I believe in miracles and I know ours is on the way, we just have to be patient. Have I mentioned how much I HATE CF!!! :mad:

This visit will be really hard because they are only allowing visitors that are over 18 and only 2 in the room at a time. I dont know if they are being flexible at all but I know when Alyssa realized that she was going to be in the hospital on Thanksgiving day she got very upset and then knowing that she couldn have her family visit made it worse.

The great news is that when we get out, she will be ready to rock and roll on our Disney vacation.


NOW HERE IS SOMETHING AMAZING >>> BE PREPARED

So Alyssa cried basically all the way home because of the changes to visitors and the holiday issue. As we were on our street approaching our house she sees her daddy in the driveway and she starts to get upset again because she just gets emotional when she is being admitted. He is walking bak from the mailbox and I notice some packages in his hand!!!!!!! I slam the car in park and Alyssa and I both jump out and im yelling...."DONT OPEN IT!!!!!!!". You wouldve thought it was a bomb LMAO!

He so casually finishes pulling a little box out of a slightly bigger box and it was just so cute and he says "Alyssa got a present" he is all grins right....so I proceed to tell him not to open ANY ANY ANY packages for ANY ANY ANY reason. He says, but it said Doane family. I had to explain how the whle things works.. Im telling him this as I finish gathering things from the car only to look up and sure enough he is opening the next one UGHHHH!!!! Meanwhile Alyssa is squealing with excitement which was so welcomed after the day we had!! So he peeks (such a kid) in the package and make the ooops face... like he accidentally saw it lol husbands right?

So I am so sorry Tricia and Kelly!!!!! I didnt get pics of it being opened but I do have pics!

Today was tears of joy and it was soooooo sweeet and perfect!! Alyssa nearly flipped and I am so getting a video for you all because its something about the way she says awwwwwwwww that will make you melt lol!

The tink bracelet is soo pretty and I got a pic of her sleeping with it on tonight in her tink pj's :cloud9: Thank you sooo much Kelly it is perfect and I she will wear it a lot, she loves it!!

Tricia the tote is amazing and I really wish I had caught her face on camera!!! It really is an awesome bag for a teen and she isnt going to wait for Disney to use it :yay: She was admiring it as alyssa too it out, before we noticed the "S" Alyssa read the letter and said "awe sissy its for you" she was so happy for her sissy. Its so cool that the "s" was for "Sissy" at that moment... too sweet! Thank you so much for thinking of her and you are so right ,Shayna is an incredible big sister nd Alyssa will tell you that too. There is a lot of love between them. Thank you again, what a great way to switch gears! :love:

[pacrosby]

Chrissi,

I'm so very sorry to hear that it was not a good appt. In the hospital at any time is no fun but especially during a holiday (we were in over Thanksgiving for Matty's 3rd open heart surgery). Hopefully she'll improve quickly and be out sooner than you think. I'm rootin' for her:cheer2:

But let's focus on the happy news!! How exciting to be a recipient of the Big Give! I've read alot about how generous (and talented) those folks are.


Try and stay positive ok? Make a portable Mickey countdown and keep it with you at all times. It won't be long now 'til all this will be behind you and you'll be at Disney (and think, you'll get to meet ME:yay:)

Pamela :santa:

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

[chrissid7]

Chrissi,

I'm so very sorry to hear that it was not a good appt. In the hospital at any time is no fun but especially during a holiday (we were in over Thanksgiving for Matty's 3rd open heart surgery). Hopefully she'll improve quickly and be out sooner than you think. I'm rootin' for her:cheer2:

But let's focus on the happy news!! How exciting to be a recipient of the Big Give! I've read alot about how generous (and talented) those folks are.


Try and stay positive ok? Make a portable Mickey countdown and keep it with you at all times. It won't be long now 'til all this will be behind you and you'll be at Disney (and think, you'll get to meet ME:yay:)

Pamela :santa:

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



Thanks Pamela :hug:

I am excited to meet ya!!! another highlight to the trip yay yay! We are definalty making a countdown chain, im going to need it myself just to keep track of the time. The hospital always throws me off :confused3


I am still putting people together for the surprise home makeover and that has really thrown me for a loop!!! Ill get it all figured out though somehow someway. :headache:

[Momofwishkid]

Oh, Im sorry to hear about Alyssa's bad appointment and her having to be admitted. Prayers she's better soon and your home in no time.

Sounds like the Big Give was just what she needed at the that moment. Cant wait to see pics.

[HeatherSue]

I'm so sorry that Alyssa's appointment didn't go well. I can't imagine how hard this must be on her, and on you. :hug: I'll pray that she improves quickly. :hug:

I'm so glad that she got some Big Give packages that helped bring a little joy to her day!

[rie'smom]

Thanks everyone for your prayers and I would like to ask you to continue with them. It wasnt a good appointment :sad2:

Her pft's were only at 32% and that makes me feel like crap just saying it! I am terrified and I can t even show it. I know that she is going to get better!!! I know it because I believe in miracles and I know ours is on the way, we just have to be patient. Have I mentioned how much I HATE CF!!! :mad:

This visit will be really hard because they are only allowing visitors that are over 18 and only 2 in the room at a time. I dont know if they are being flexible at all but I know when Alyssa realized that she was going to be in the hospital on Thanksgiving day she got very upset and then knowing that she couldn have her family visit made it worse.

The great news is that when we get out, she will be ready to rock and roll on our Disney vacation.


NOW HERE IS SOMETHING AMAZING >>> BE PREPARED

So Alyssa cried basically all the way home because of the changes to visitors and the holiday issue. As we were on our street approaching our house she sees her daddy in the driveway and she starts to get upset again because she just gets emotional when she is being admitted. He is walking bak from the mailbox and I notice some packages in his hand!!!!!!! I slam the car in park and Alyssa and I both jump out and im yelling...."DONT OPEN IT!!!!!!!". You wouldve thought it was a bomb LMAO!

He so casually finishes pulling a little box out of a slightly bigger box and it was just so cute and he says "Alyssa got a present" he is all grins right....so I proceed to tell him not to open ANY ANY ANY packages for ANY ANY ANY reason. He says, but it said Doane family. I had to explain how the whle things works.. Im telling him this as I finish gathering things from the car only to look up and sure enough he is opening the next one UGHHHH!!!! Meanwhile Alyssa is squealing with excitement which was so welcomed after the day we had!! So he peeks (such a kid) in the package and make the ooops face... like he accidentally saw it lol husbands right?

So I am so sorry Tricia and Kelly!!!!! I didnt get pics of it being opened but I do have pics!

Today was tears of joy and it was soooooo sweeet and perfect!! Alyssa nearly flipped and I am so getting a video for you all because its something about the way she says awwwwwwwww that will make you melt lol!

The tink bracelet is soo pretty and I got a pic of her sleeping with it on tonight in her tink pj's :cloud9: Thank you sooo much Kelly it is perfect and I she will wear it a lot, she loves it!!

Tricia the tote is amazing and I really wish I had caught her face on camera!!! It really is an awesome bag for a teen and she isnt going to wait for Disney to use it :yay: She was admiring it as alyssa too it out, before we noticed the "S" Alyssa read the letter and said "awe sissy its for you" she was so happy for her sissy. Its so cool that the "s" was for "Sissy" at that moment... too sweet! Thank you so much for thinking of her and you are so right ,Shayna is an incredible big sister nd Alyssa will tell you that too. There is a lot of love between them. Thank you again, what a great way to switch gears! :love:

I'm sorry her appointment did not go well. You all remain in my prayers.

[pipersmom]

:hug: I'm sorry you're having to deal with all this hon. If you have time, maybe hit a local dollar store and pick up some Thanksgiving decs for her to put in the room? I bet you'll also find they are more flexible than it appears, I know the rules were the same on Piper's admission and the only thing they really stressed was not having younger visitors (ie, under 13 or so). Let us know once you guys are all settled in there.

Hooray!! For the big give. Hopefully someone will be able to bring you some of the packages that come while she's in the hospital. I can see those reeeeally brightening up her day. Praying and sending lots of hugs your way...

[tricia]

So sorry to hear about the bad appointment. As I was reading the post I was thinking 'oh no, and the package she comes home to is for her sister, and not even for her' I am so glad there was something there for her too, and that she was happy for her sister. The bag might need a little ironing to make it presentable, as I had to squish it up really good to get it in an envelope.

[maroo]

Definitely praying for you guys.

I am so sorry that you guys gotta go back to club med. But at least the tune up will get her good and ready for her trip! :woohoo:

I am so glad that the packages brought a smile to her face. How funny that her Dad was excited, too! :goodvibes

I am praying for you guys. :hug:

[chrissid7]

So sorry to hear about the bad appointment. As I was reading the post I was thinking 'oh no, and the package she comes home to is for her sister, and not even for her' I am so glad there was something there for her too, and that she was happy for her sister. The bag might need a little ironing to make it presentable, as I had to squish it up really good to get it in an envelope.


It wouldnt have matter if it were the only package honestly. Alyssa really is an appreciative child. She was as excited for her as if it were her own.

Funny thing last nigt I went and got the package and the bag to get the name and addy off of it, I had it sitting up against my computer desk and this morning it was gone, so she didnt even wait a day!!! Alyssa was looking for it too becase some of her siisy's friends stopped by to see Alyssa before we leave for club med and she wanted them to see it. Im still not sure why they werent in school today????? hmmmmmm. But we couldnt believe that she took the time this morning to start using it lol!:cool2:

[tricia]

Good, it is nice when siblings can be happy for each other. It doesn't happen often enough with my boys:rolleyes:

[maroo]

It wouldnt have matter if it were the only package honestly. Alyssa really is an appreciative child. She was as excited for her as if it were her own.



That is just precious. What a kind-hearted child. :hug: :hug: :hug:

[yinyanggirls]

What a great ending to a crummy day! I'm so sorry to hear she has to be in for Thanksgiving. At least her trip is close and you can help her to think about that.

[teresajoy]

I am so sorry about the disapointing appointment! :hug::hug::hug::hug:

I'm so glad the Big Give could bring a smile to such a bad day! :hug:

[chrissid7]

OMG I am so frustrated!! Alyssa is getting worse and no beds are available!!!We were waiting all day. I actually got a call at 7 am saying they had a bed (we were still asleep) and then another 1 at 7:45 saying sorry that they had to give the bed to an emergency. So we never got a call back to come in! Im very disapointed and scared right now! If she doesnt get a call in the morning Im calling her docs and letting them know that we are switching to UVA. I cant handle this sitting and waiting and knowing that she is having trouble and she is scared too. Tonight while eating dinner she cried and said that when she was running today she lost her breathe and it took a long time to get it back and that she was soooo scared. That ripped me up on the inside!!

I hate it! Im aggrivated and I just want to see her feel better! God give us strength!

[pipersmom]

Hey hon, just saw your comment on FB as well..as I said there, if you need the lowdown on UVa, call me! I can't imagine what you're going through right now..well..kind of can, but you know what I mean. Tell Alyssa they have art therapy and music therapy, a great teacher, play bingo on tv..Piper loves it there. Still not the same as being at a place you know, but they do have great programs on Peds. Praying for you guys.

[chrissid7]

Hey hon, just saw your comment on FB as well..as I said there, if you need the lowdown on UVa, call me! I can't imagine what you're going through right now..well..kind of can, but you know what I mean. Tell Alyssa they have art therapy and music therapy, a great teacher, play bingo on tv..Piper loves it there. Still not the same as being at a place you know, but they do have great programs on Peds. Praying for you guys.


Thanks Hirl, I really truely appreciate that! I think it might just be time. MVC is wonderful dont get me wrong but its days like today that I just want to scream and I keep asking myself am I doing everything I can, and I feel like if we dont look elsewhere that question cant be answered yes. It will be so hard because we have a family there. They also have great programs and we love all of the teachers, nurses, therapist we are even on a 1st mane basis with the housekeeping staff...they are amazingly sweet!

OMG what to do what to do! So how do you feel about the doctors there?

We had a great doctor (Dr.Rubin) come from wake forest and he is amazing. He brings so much to the table and I want the chance to see what he thinks and get his opinion. During our last admission he was on for the weekend and we got to meet him but it was more introductions than anything so I was hoping that he was going to come back and just blow our minds, but he didnt. His 1st impression was very good and Alyssa loved him right off of the bat, he is a magician and he played and made her laugh. It was nice but I was looking for another kind of magic, the kind that makes my babies lungs function better than ever.

I would like to know what you think about the doctors there, and how many do you see. We have 3 including the new Dr.Rubin.

[pipersmom]

Piper's primary is Dr Froh, she's a great woman, I'll admit she seemed cold to me at first, but..as she got to know Piper better she has warmed up, she's just a reserved person, I think. We see her for all Piper's clinic appts, etc. On rounds or weekend calls, we have also worked with Dr. Yu (she's great as well, I love her) and Dr. Gaston. To me the fact that Dr. Froh is ALWAYS the one to see Piper is a good thing, she knows her, how her lungs work, when she's hearing something new, etc. She's also very interested in what YOU think and the changes you've seen, willing to discuss any new therapy ideas you bring in, etc. She wouldn't be doing magic tricks for Alyssa..lol..but she would be giving her excellent care. There's also a Fellow with them right now, Nico..(1st name, he's always let Piper call him that, so I have no idea of his last name..lol)..he's german, kind of cute..Piper has a huge crush on him, it's totally funny. I suspect Alyssa might have the same reaction! What else would you like to know?

[chrissid7]

Thats cute that Piper has a crush on him lol. Alyssa has had a crush on a couple of different staff members lol. She thought Dr.Rubin was adorable, which totaly surprised me because he is older than her parents but he is quite funny, and very sweet so i can kinda see it. Alyssa loves people for their personality and I love that about her. If you dont have a bedside manner you can count on her being quiet.

I guess my biggest thing right now is what is their "standard" CF routines. How often are PFT"S done while inpatient, how often is respiratory therapy done and is it by hand or vest, what is a typical tune up length of stay. Are they trying anything new?

Ok several questions lol

[pipersmom]

Thats cute that Piper has a crush on him lol. Alyssa has had a crush on a couple of different staff members lol. She thought Dr.Rubin was adorable, which totaly surprised me because he is older than her parents but he is quite funny, and very sweet so i can kinda see it. Alyssa loves people for their personality and I love that about her. If you dont have a bedside manner you can count on her being quiet.

I guess my biggest thing right now is what is their "standard" CF routines. How often are PFT"S done while inpatient, how often is respiratory therapy done and is it by hand or vest, what is a typical tune up length of stay. Are they trying anything new?

Ok several questions lol

It's okay.. PFT days are Mons and Thurs. RT is entirely based on your home routine. Obviously they will step it up if needed, but they will follow your routine as much as possible. If she's used to hand CPT, they'll do hand, they can do a mix, whatever you do at home, they really do emphasize not throwing off your routine any more than absolutely necessary. Ordinary tune-up time is 2-3 weeks. We normally do 3 weeks, but I think a lot of that depends on the severity of the exacerbation, etc. Dr Froh tends to be aggressive, which I think is a good thing. They do clinical trials, were right on top of hypertonic, and put Piper on ibuprofen after I mentioned it and she researched it. My only complaint at all is getting return phone calls in a timely manner, but..if I don't get a call back the same day, I tend to get irritated, which may not always be necessary, lol. When she is getting sick, they are usually very good about returning my calls, and I would never hesitate to call after hours.

[maroo]

OMG I am so frustrated!! Alyssa is getting worse and no beds are available!!!We were waiting all day. I actually got a call at 7 am saying they had a bed (we were still asleep) and then another 1 at 7:45 saying sorry that they had to give the bed to an emergency. So we never got a call back to come in! Im very disapointed and scared right now! If she doesnt get a call in the morning Im calling her docs and letting them know that we are switching to UVA. I cant handle this sitting and waiting and knowing that she is having trouble and she is scared too. Tonight while eating dinner she cried and said that when she was running today she lost her breathe and it took a long time to get it back and that she was soooo scared. That ripped me up on the inside!!

I hate it! Im aggrivated and I just want to see her feel better! God give us strength!

Oh...this just makes me want to cry. Is that normal? Are they just seeing a high rate of illness right now?

Gosh...I am praying for you guys. Hopefully you can get it all worked out. :hug:

[chrissid7]

It's okay.. PFT days are Mons and Thurs. RT is entirely based on your home routine. Obviously they will step it up if needed, but they will follow your routine as much as possible. If she's used to hand CPT, they'll do hand, they can do a mix, whatever you do at home, they really do emphasize not throwing off your routine any more than absolutely necessary. Ordinary tune-up time is 2-3 weeks. We normally do 3 weeks, but I think a lot of that depends on the severity of the exacerbation, etc. Dr Froh tends to be aggressive, which I think is a good thing. They do clinical trials, were right on top of hypertonic, and put Piper on ibuprofen after I mentioned it and she researched it. My only complaint at all is getting return phone calls in a timely manner, but..if I don't get a call back the same day, I tend to get irritated, which may not always be necessary, lol. When she is getting sick, they are usually very good about returning my calls, and I would never hesitate to call after hours.


Thats awesome! Thank you so much and that does make me feel better. That sounds very much like our hospital except they make everyone do 4 times a day CPT by hand unless you only do the vest I think. Alyssa has been on hypertonic I guess for almost 2 years now but she hates it and sometimes I wonder how much she is getting in.

I know this is a crazy question and its always hard to figure out just why sometimes but what do you think helped Piper to get back to 70%. I will do anything and I mean Anything to see 70 again!!! Alyssa's base was around 70 for a long time and them all of a sudden with no real reason she droppped to 50 in 1 month... again they have no idea why they just said "sometimes thses things happen its the nature of the disease". Bull spit! I need reall answers but there are none.

I thinkim going to try the ibuprophin for a while. but did you change anything this time to get that 70 back. Thats sooo awesome!!!!! :yay:

[pipersmom]

Thats awesome! Thank you so much and that does make me feel better. That sounds very much like our hospital except they make everyone do 4 times a day CPT by hand unless you only do the vest I think. Alyssa has been on hypertonic I guess for almost 2 years now but she hates it and sometimes I wonder how much she is getting in.

I know this is a crazy question and its always hard to figure out just why sometimes but what do you think helped Piper to get back to 70%. I will do anything and I mean Anything to see 70 again!!! Alyssa's base was around 70 for a long time and them all of a sudden with no real reason she droppped to 50 in 1 month... again they have no idea why they just said "sometimes thses things happen its the nature of the disease". Bull spit! I need reall answers but there are none.

I thinkim going to try the ibuprophin for a while. but did you change anything this time to get that 70 back. Thats sooo awesome!!!!! :yay:

I should clarify, CFers at UVa get 4x daily CPT routinely when in the club, they will also do overnight CPT if needed, which Piper usually does, at least to begin with. If sats improve and o2 isn't needed, they'll stop the overnight treatments.

I completely understand why you're asking hon. When she dropped into the 50's, it was after she had spent most of the summer with her Dad, and he is less than diligent when it comes to doing her treatments. I won't go into it too much here except to say I have taken him back to court over it in the past. I do know we added azithromycin to her regimen..*thinking* about 2 weeks before she ended up back in the hospital. She doesn't culture pseudomonas, which is why azith is usually prescribed, but I asked about it, and Dr Froh said "it can't hurt" (love that!). They are currently doing studies of azith on people w/out pseudo as well, so there does seem to be a train of thought that it can help with other bugs. We also started bactrim 2x daily continuously during her Sept hospitalization, when her MRSA actually showed vulnerability to it! We also continue to do TOBI even without a pseudo culture. I don't know that there's a "magic" answer unless it is the drug cocktail she started after her Sept stay at the club. (And prayers).

[chrissid7]

Thank you so much!!! :hug: I actually do have a list of things to ask them and azrith.. is on the list! She also hasnt cultures any of those organisims for a while but they always like to say that something may be lurking down deep, so I say now lets throw it all at it!

I normally would tke the opposite approach but im really afraid right now! :sad2:

You are so sweet to stay up with me and answer my questions heres another :hug:

[chrissid7]

alos Im sorry that you have to deal with the other stuff too! We have a blended family and I am blessed that our older 2 kids dont have much to do with the "others" so usually no issues there.

I need to fix my aim lol... so we can talk!

[yinyanggirls]

You are so sweet to stay up with me and answer my questions heres another :hug:

Isn't it such a relief to meet someone who totally "gets it"? I was so thrilled to meet a mom with much in common right after we moved here three years ago. Finding Docs and therapists, and deciding on schools, is all so much easier when you have someone to compare notes with and bounce ideas off of. I have no idea what you guys are talking about, but I'm sure we all have so much in common as far as the kids who have anxiety just being in a Dr office, or the sensory issues many of them have, or the social skills that are hard to learn when they spend so much time with adults, etc, etc.

[pipersmom]

alos Im sorry that you have to deal with the other stuff too! We have a blended family and I am blessed that our older 2 kids dont have much to do with the "others" so usually no issues there.

I need to fix my aim lol... so we can talk!

lol @ aim..that would work.

Before the divorce, we were living in Cincinnati, which has one of the best CF centers in the country. Dr Acton (the lead there) was all about being aggressive from the start and not waiting for things to go downhill, so that's always been my main goal. It sucks sometimes, just because of the time element, but I have never regretted it for a moment. I would much rather have her doing a few things that aren't necessarily helping and a lot of things that are, than only doing the "common" stuff. I don't mind staying up, I've been where you are, and I know how much it bites! But on that note, I do need to go to bed. Please be sure and let me know what's going on tomorrow, and if you end up at UVa, be sure to throw Piper's name around, you'll get instant recognition..lmao! Also if you end up there, when they bring her first tray, tell them you want vouchers for the rest of the time..then you can go down to the cafeteria and pick out things for Alyssa she'll actually eat..there's a grill, and the regular part of the cafe! (You can even get both of yourselves breakfast on the voucher *it's dirt cheap*..just be sure to hit the grill for it, the stuff in the main part is ermm..less than great!)

[chrissid7]

You rock thanks and ill keep ya posted!

[pipersmom]

Ohh..I almost forgot...and the parking is FREE!! LOL..I was looking at the MCV website earlier when I thought you guys were going in today so we could send Alyssa some pixie dust, and saw the parking fee and my mouth dropped open..like they're not getting enough of your money now !?!

[maroo]

Ok...totally lurking...

But that meal voucher thing....is a GREAT idea! And that alone...would give me reason to try that place out! :thumbsup2 The junk they try to feed Lauren and William when they are in club med is just disgusting! Who can get well when they can't even eat? :confused3

[chrissid7]

Ok...totally lurking...

But that meal voucher thing....is a GREAT idea! And that alone...would give me reason to try that place out! :thumbsup2 The junk they try to feed Lauren and William when they are in club med is just disgusting! Who can get well when they can't even eat? :confused3

We are given a 10% off voucher 1 time when we arrive but it doesnt go far. Alyssa has so many dietary restrictions that her menu is limited to baked chicken breast (its so plain and boring) and cheese omlets. Needless to say we bring in lots of food! We are so blessed to only live 15 mins away (another reason its hard to leave).

As far as the parking goes, it doesnt really get us because we dont use it lol. My husband works across the street and he has a spot so he walks over and if he is relieving me to go home for a while he drives to the valet loop and we just swap off. You can purchase a weekly pass for the deck too I thinkit was like $8.

Alyssa can have the chic filet waffles fries and they will bring them to her sometimes as a treat lol. We have a McDonalds, Chic Filet, blimpies subs and alpine bagel. There are also some great street vendors in the city on the same block. Problem is the cost! I wish they did more to offset the cost of food especially when the hospital can not offer her enough to keep her happy. Nutrition has a couple of ladies who go out of their way for her though. 1 even went to the grocery store and brought back Amy gluten free mac and chesse when Alyssa had her feeding tube placed. They had to put it in a blender for her and it was gross, but so nice that they tried so hard.

All in all its a great place, but it is no good to us if WE CANT GET IN!!

Thanks girls!

[HeatherSue]

Chrissi, I'm so sorry a out the hospital situation! :hug::hug::hug: I can't imagine how that would feel. I'm still praying for you guys. :hug::hug::hug:

[chrissid7]

We are here at club med. Lots of tears and 3 attempts and finally an IV going. :sad2: She is falling asleep now and it s nice to see her relax. She loves the people here but it is no fun getting things going!

She got a package today that made her day! I feel terrible that I left the note at home and I cannot remember the name to save my life, but I believe it started with a G. Im calling my husband in the morning for the name. I did get pics and I will post more tomorrow. It was soooo fun though and such a cool idea!!! She loved them, we all had turns actually. They came right before we left so the timing was great!

[Momofwishkid]

Good to hear your settled in but Im sorry it's been rough so far. Im praying for an easy stay that is over soon.

[pipersmom]

We are here at club med. Lots of tears and 3 attempts and finally an IV going. :sad2: She is falling asleep now and it s nice to see her relax. She loves the people here but it is no fun getting things going!

She got a package today that made her day! I feel terrible that I left the note at home and I cannot remember the name to save my life, but I believe it started with a G. Im calling my husband in the morning for the name. I did get pics and I will post more tomorrow. It was soooo fun though and such a cool idea!!! She loved them, we all had turns actually. They came right before we left so the timing was great!

So cool to get a package today, right when you needed it! :wizard: I hate admission day, way too much poking and prodding and questions you've answered 1001 times before. You know, somehow I think whoever sent the package will understand why you can't remember the name. :rolleyes: Take good care of you while you're there too. Hugs from us! :hug:

[chrissid7]

IT WAS THE VANDERBILTS!! Thank you VANDERBILTS!!

I was so thankful that Bellas family got the awesome " I spy" pillows too! They are so fun!

All of the nurses here so far have been so excited when Alyssa tells them about all of the awesome stuff we are going. They have just fallen in love with the tinker bracelet too... which my the way she has only taken off when they were trying to get IV's started!

we are so bleesed to have allof these awesome girls here. You know when your nurse comes in and kisses the ****oo and says "Alyssa im sooo sorry that i had to poke you but you know how much I love you right" You know you are in the right place.

We are certainly keeping UVA open if things dont seem to be improving here, but I love how they love my baby girl here and we are in good hands. :love:

[maroo]

Continuing to pray for you guys!!

:hug:

[chrissid7]

IT WAS THE VANDERBILTS!! Thank you VANDERBILTS!!

I was so thankful that Bellas family got the awesome " I spy" pillows too! They are so fun!

All of the nurses here so far have been so excited when Alyssa tells them about all of the awesome stuff we are going. They have just fallen in love with the tinker bracelet too... which my the way she has only taken off when they were trying to get IV's started!

we are so bleesed to have allof these awesome girls here. You know when your nurse comes in and kisses the ****oo and says "Alyssa im sooo sorry that i had to poke you but you know how much I love you right" You know you are in the right place.

We are certainly keeping UVA open if things dont seem to be improving here, but I love how they love my baby girl here and we are in good hands. :love:

OMg that is funny! I just realized that it edited Boo Boo, that made me laugh when I realized why.... ooops:rotfl2:

[chrissid7]

Quick update...So the Iv we finally got going last night got pulled out by the blanket ( the tape got stuck on it) so at 7am she got another but then this afternoon it blew. So they eneded up getting some women from the ER to come up and get it started, we thought that 1 was getting ready to low because when they flushed it it started hurting her. They were able to reposition it some and keep it working THANK GOD!

She is sleeping now and I hope that I will be soon too. We are just exhausted!

[yinyanggirls]

She is sleeping now and I hope that I will be soon too. We are just exhausted!

It sounds like a tough day. Get some rest!

[maroo]

How is Alyssa this morning? Is she doing better?

Just wanted you to know that I am thinking about her and praying for her!

[pipersmom]

Still thinking about you guys and hoping everything is going well!! :hug:

[chrissid7]

Thanks guys for all of the prayers and well wishes! They are working!!!!!!
Today she did PFT's and blew 43% woooooohoooooo!!! :thumbsup2 Thats up 11% since Friday and that is the biggest jump she has ever had in such a short time... 4 days and 11%. OMG I cannot tell you what a relief... please continue what you were doing because 43% is still very low and i would give an arm or leg to see 55-60 again of course I would love more but realistically thats good!

After all of the great stuff we got back to her room too hook her back up to her IV and it blew, she told me when she woke up that it was going bad and she knew it was going to blow today (this amazes me!).

It took 2 sticks to get a new one going but its going! She also got her G-Tube (mic-key) button changed for the 1st time today. It took a lot of tears to get to that point but it went a lot easier thn she thought it would (and me too).


Ughhhh now we are just tired but excited for a good day tomorrow.

[Momofwishkid]

Im so happy to hear Alyssa is doing better. :banana: I will continue to pray and Im sure she will continue to get better.

[pipersmom]

Thanks guys for all of the prayers and well wishes! They are working!!!!!!
Today she did PFT's and blew 43% woooooohoooooo!!! :thumbsup2 Thats up 11% since Friday and that is the biggest jump she has ever had in such a short time... 4 days and 11%. OMG I cannot tell you what a relief... please continue what you were doing because 43% is still very low and i would give an arm or leg to see 55-60 again of course I would love more but realistically thats good!

After all of the great stuff we got back to her room too hook her back up to her IV and it blew, she told me when she woke up that it was going bad and she knew it was going to blow today (this amazes me!).

It took 2 sticks to get a new one going but its going! She also got her G-Tube (mic-key) button changed for the 1st time today. It took a lot of tears to get to that point but it went a lot easier thn she thought it would (and me too).


Ughhhh now we are just tired but excited for a good day tomorrow.

Hooray for an update!! I know it's silly, but I was getting worried about you guys. 11%!!!! :banana::banana: That's an awesome jump, obviously the antibiotics are clearing stuff out :goodvibes So happy the needle change went as smoothly as it did, and that she didn't think the button change was horrible. Hopefully next time it comes time to do that, she will be much more relaxed about it. Tell her Piper says hello, and know we're still thinking about you all and keeping you in our prayers!

[maroo]

I was getting worried, too! It is amazing to me how worried I can be (and translates to praying for) my virtual friends. I consider you guys "real" friends, although my in real life friends think that is a little strange. They just don't get it. But I totally see how you could be worried. :)


The update is AWESOME!!!!!!!! 11% is fantastic! I am hoping for more, too! Maybe one day she can get a port and make those icky sticks go away. :(

You guys will be all set for your trip and healthy, which will be GREAT! :)

[chrissid7]

I was getting worried, too! It is amazing to me how worried I can be (and translates to praying for) my virtual friends. I consider you guys "real" friends, although my in real life friends think that is a little strange. They just don't get it. But I totally see how you could be worried. :)


The update is AWESOME!!!!!!!! 11% is fantastic! I am hoping for more, too! Maybe one day she can get a port and make those icky sticks go away. :(

You guys will be all set for your trip and healthy, which will be GREAT! :)

Hooray for an update!! I know it's silly, but I was getting worried about you guys. 11%!!!! :banana::banana: That's an awesome jump, obviously the antibiotics are clearing stuff out :goodvibes So happy the needle change went as smoothly as it did, and that she didn't think the button change was horrible. Hopefully next time it comes time to do that, she will be much more relaxed about it. Tell her Piper says hello, and know we're still thinking about you all and keeping you in our prayers!


Its not silly at all and I feel exactly the the same. I have made awesome friends here who I sincerely care about and I am THANKFUL to have found you guys!!. I honestly believe non of this was accidental and you were put in our lives for a reason... you have made me smile, cry and worry so obviously you were supposed to be my friends! :grouphug:

I just dont believe anything is accidental! The prayers are so appreciated and I cant thank you enough for it!

[cajunfan]

Have you all heard anything on how long Alyssa will be in the hospital? I hope not too much longer and that she sontinues the great improvement!

Lynn

[chrissid7]

Have you all heard anything on how long Alyssa will be in the hospital? I hope not too much longer and that she sontinues the great improvement!

Lynn

Its actually going to depend on how much improvement she shows on Friday. She will do PFT' again then. I doubt that we will be out before Monday the 1st. That will be 10 days for her and we usually do at least 14 But I think they will consider it as long as she is showing improvement.

Thank you so much for thinking of her. We are very happy with the progress thus far and we know she will just go up... praying on it daily! :hug:

[chrissid7]

Happy Thanksgiving to all of my wonderful Dis Peeps! :grouphug:

Today I have many things to be Thankful for and you all are included!

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 :scared1: 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".

May you all eat like kings and then sleep like princesses!

[pipersmom]

I know I already said this on my thread, but have a wonderful Thanksgiving !! Wouldn't ten days be great?? That being said, I was going to put stuff in the mail tomorrow..maybe I'll just mail it to your home addy instead! I know UVa won't forward stuff once a patient has been discharged! Anyway, give Alyssa hugs for us..I'll be thinking about you guys and praying for another 11% (at least)!!

[chrissid7]

Today alyssa did PFT's and she had a 3% increase. She is not at 46%. Its not the 11% but it is an increase and we are blessed. Today she started nebbing a new (not new but new approach) antibiotic. I am hopeful to say the least.
Her IV blew again today so i think the count is at 11 sticks in 1 week.. it stinks!

OMG here is the super duper awesome part of the day. Her brother called her to tell her that he went to the mailbox and there was something in there for her,a package and an envelope from GKTW she begged her daddy to bring it asap. A lil while later daddy calls to say he happened to check the front porch and there we 3 boxes for her! What perfect timing!!!! The Disboutiquers must all have esp because that packages have arrived at the perfect times everytime! Shayna is at my sisters for the weekend and Dj was so excited for her. :cool1:

I really wanted them to open them all together but lyssa needed the joy and her brother and sister wanted her to have the packages. :yay:

I will post all of the details with the pics but OMG !!! Alyssa squealed and had such a wonderful time and just glowed with delight. She didnt get to open them until 9 pm but she has already dressed Salarina (her bitty baby) and went showing off. She had to show her nurse every single peice and there were a lot of peices in those boxes!! :lovestruc

I wish there was a better way to be able to say thank you, because this post comes nowhere close (the pics will be closer) but it was really really special to us. Look for pics by Sunday. :grouphug:

[yinyanggirls]

Glad to hear she's going in the right direction, even if slowly. I can't wait to see pics of the cute stuff and hopefully the look on her face when opening! :cutie:

[Momofwishkid]

Glad to hear Alyssa is doing better and hoping it continues until you get the increase she needs. Those Big Give people sure do know when she needs the packages :) cant wait to see pics.

[pacrosby]

I can never get into too much (because I don't trust this computer) but I just wanted to stop by and say......

11 MORE DAYS!!!!!!!!!!

:yay::yay::yay::banana::banana::dance3::cool1::


I hope Alyssa is smiling today:)


Pamela:santa:

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

[pipersmom]

Good evening! I'm glad Alyssa had an increase, I know you were hoping for more, I was too, but 14% so far is pretty good, esp for a ten day run. I'm still praying that she'll continue to improve. I think it's harder to in the club with the limited activity and such.

So cool all the packages she got! Are they still talking about sending you home tomorrow? Hugs from Piper and I....

[chrissid7]

Glad to hear she's going in the right direction, even if slowly. I can't wait to see pics of the cute stuff and hopefully the look on her face when opening! :cutie:

She will blow again tomorrow and I think we will see another lil bump...thats what im praying for. you are going to love the pics, i wish i had remembered to TAKE MY CAMERA HOME!!! I was so mad when I got there and realized i never packed it. Hopefully by Wednesday ill get them on.

Glad to hear Alyssa is doing better and hoping it continues until you get the increase she needs. Those Big Give people sure do know when she needs the packages :) cant wait to see pics.
Thank you! They really do, it has been perfect!!

I can never get into too much (because I don't trust this computer) but I just wanted to stop by and say......

11 MORE DAYS!!!!!!!!!!

:yay::yay::yay::banana::banana::dance3::cool1::


I hope Alyssa is smiling today:)

I know I cannot believe how quickly this rolled up!

Pamela:santa:

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

Good evening! I'm glad Alyssa had an increase, I know you were hoping for more, I was too, but 14% so far is pretty good, esp for a ten day run. I'm still praying that she'll continue to improve. I think it's harder to in the club with the limited activity and such.

So cool all the packages she got! Are they still talking about sending you home tomorrow? Hugs from Piper and I....

14% is very good and im happy about that that we always get excited whenever we get increase. i really do think we are on our way back to at least 60% but she knows it going to be hard work to get there.

Im thinking maybe Tuesday but he said that he would try to make it early Tuesday so that we dont have to reschedule the SEND OFF PARTY! :dance3:

Is Piper home now? I hope you enjoyed your time and did some things for you!! Especially sleep in lol! I hope she is doing well. Hugs to you both.




Alyssa keeps telling all of the staff here at club med that all of this stuff is coming from mommies Big Give friends on the internet and all over the world lol.
That really makes me feel special hearing that I have these amazing and talented friends "all over the internet and the world"

[maroo]

"Mommies Big Give friends on the internet!" :rotfl: :rotfl2: :lmao:

That is so funny!

So...what are the staff saying or doing when she tells them that. :) Mommy's friends from the internet are sending me cool stuff! :goodvibes

[chrissid7]

"Mommies Big Give friends on the internet!" :rotfl: :rotfl2: :lmao:

That is so funny!

So...what are the staff saying or doing when she tells them that. :) Mommy's friends from the internet are sending me cool stuff! :goodvibes

Most of them want to know how they can have such awesome friends so you know I have directed them to the Dis. :woohoo:

[pipersmom]

Thinking about you and hoping they can get your butts out of THERE today if Alyssa is ready!! Woohoo for your send-off party! Can't wait to hear what happens and see pictures of Big Give stuff!!

[cajunfan]

Praying that Alyssa is doing fabulous and can go home today to have a good time at her send off party!

Lynn

PS...I can't wait to see pictures either!

[Momofwishkid]

Im praying also, hope Alyssa is doing well and can make it home for her party!!

[chrissid7]

Wow guys.... you will never believe the whirlwind past few days. BUT 1ST.... WE made it home 2 hours before her wish granters were due to be here.:scared1:

I think I mentioned somewhere, but honestly my brain is soooo fried!! but my DH was feeling really bad Saturday night at his familys dinner and he felt bad all day Sunday while he sat with Alyssa at the hospital. He was complaining of a lot of pain in his lower right abdomin. Around 10:00 Sunday night I started checking his symptoms online and I called my sis who has had her gallbladder remved but she said it sounded like what her husband had before he had his appenix removed.

Sure enough he had every symptom. I called him around 11pm and begged him to come down to the er and I would meet him but he was sound asleep but said he would the next day after he put the 25 ft tree up at the governers mansion, that ticked me off but at least he agreed to come which i didnt think he would.

So even though he was in pain he tried not to come at 1 but I told him if he ruptured and we missed the Disney trip because he was being stupid...we would never forgive him! So he showed up and and a few hours later he was in surgery haveing it removed! The best part is.... Saturday night when he grabbed his tummy and was moaning in pain Alyssa said, "Daddy thats you appendix and you need to be looked at" lol too funny she said she saw the same thing happen to Uncle Jessie on FULL HOUSE!!!! WHAT????? :rotfl2:

Alyssa could have been discharged on Monday but because of her Daddy surgey and him staying there we decided to do another day of treatment, it was just better for all of us.

Coming tomorrow (maybe later tonight) HUGE BIG GIVE POST AND SEND OFF PARTY WOOHOO!

[pipersmom]

Oh geeez...just what you needed, another person in the hospital!! Glad you caught it in time though, and happy you guys are home and were able to have your party! I can't wait to hear all the details :)

[chrissid7]

OMG!!! OMG!!!! OMG!!! I cant believe I forgot to tell you all the super best part!! Alyssa had 51% lung function when we left the hospital YAYYYYYYYYYYYYYY!!!:dance3: :yay: We have not seen 50 in over a year!!!

I CRIED AND CRIED TEARS OF JOY!!!!:cheer2:

I just know its a Blessing and Prayers are being answered and I do believe in miracles!!!

1 more note before I go get a few things done... the lil room makeover that I began working on for Alyssa... well now involves way more than several hundred volunteers, including football teams (my husband is a coach), churches, many many friends and family members. As it stands every room in the house is getting something. People started raising $$$ on their own for projects and I Live in the best community in the world, and am so blessed! Alyssa makes friend with everyone and honestly, tell everyone she comes in contact with that she loves them! :love:

I have had so many people tell me that our family has inspired them and I still think to myself "us, really? why" :confused3

I cry all the time and I still cannot expain the outpouring of support and I am overwhelmed. I have chills and tears as I write this. I cannot wait to share it with you all!! :flower3:

My family is going to flip out!!! They have no idea! :scared1:

[pipersmom]

Oh my holy guacamole!! 51% ROCKS! I am so happy she'll have that much more stamina on your trip! And the house!! All you need is some tv cameras and you'd have your own episode of extreme home makeover! I am so excited for you hon...I was getting ready to ask if she'd had PFTs done again...

[yinyanggirls]

OMG!!! OMG!!!! OMG!!! I cant believe I forgot to tell you all the super best part!! Alyssa had 51% lung function when we left the hospital YAYYYYYYYYYYYYYY!!!:dance3: :yay: We have not seen 50 in over a year!!!


Wow, you guys have had a roller coaster week! So glad you caught the appendix in time, and especially before you left!!!:eek:
How awesome that Alyssa's doing so well! That is amazing. And how wonderful that your community is offering their love and support to you guys. Makes you look at the world in a different way, huh?:lovestruc

[Momofwishkid]

:cheer2::cheer2: 51% thats awesome! Im so happy that Alyssa made it home for her party and cant wait to hear about it.
Sorry about DH's appendix but glad you caught it.

[cajunfan]

Yeah for Alyssa!!!! I am so glad that she made it home in time fo rthe send off party. I am soooosorry to hear about your hubby...is it safe to assume he is doing well now?

Can't wait to hear all the details!

Lynn

[maroo]

I am SOOOO excited for you!

Congrats on getting your medical shy husband to the doctor at all! And surgery to boot! :cool2:

51%!!!!!!!!!!! That is awesome!!!!

Much better for your trip, too! It will be great to have her as healthy as possible! :thumbsup2

Full House...that is too funny!

I love that the Community is getting together to help you. Sometimes just living your life with all of the challenges - and still staying strong - IS very encouraging to all of the people around you! :hug: I am not surprised at all that they are encouraged!

[kdzbear]

I am so glad that Alyssa's lung capacity is up and that your husband is doing better! Yeah, the trip is on! :wizard::cheer2::grouphug::woohoo::yay:

[DisneyCruiseMom]

Just subbing in...

[HeatherSue]

I'm just checking in for some pictures...:thumbsup2

[pipersmom]

Hoping you guys are doing well and are just busy !

[cajunfan]

Hope everyone is HOME and doing well!

[pacrosby]

Hey Chrissi,

I see you've been MIA....hope all is well! We're anxiously awaiting the opportunity to meet you all:goodvibes



Six more days!!!!!!!!!!:cool1:


Pamela :santa:

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

[teresajoy]

I'm hoping everyone is doing well. Don't leave us waiting too long, we worry!

[maroo]

I second that, too. I hope you are just "good" busy...

Let us know! We are praying for you guys, though. :)

[chrissid7]

OMG guys I am so sorry, I have missed everyone and cannot wait to get all caught back up! :sad2:
1st let me explain a little of where ive been. Well hubby is healing very nicely and is back at work....whew... I hated feeling like that but OMG I needed him gone so badly!
What is keeping me away is this "little" makeover....its HUGE! Now there are so many surprises and I cannot even think straight anymore. I have the most amazing friends and Family, but I didnt realize the power they have as a team!! :cheer2:

I have been hard at work having to secretly choose everything for my house and I mean everything!!!! New bed stuff for all the kids, paint for all the rooms (except my already favorite that I did).
We also just have so many events, parties, and just stuff. Christmas is so busy but because we love it sooooo much we have a lot of traditions and things we dont like to miss.

Since Alyssa didnt get to see any of her cousins or friends for those 11 days, we have had a house full ( I love it) but I am sooooo far behind. I have NO Christmas Present purchased.........yes I said NO presents ahhhhhhhhhhhhh. Im sooooo freaked out about that. Ive had no time!
With all of the stuff going on, 4 treatments a day by hand, tube feeds ad cleanings, trying to clean out 8 years of junk out of my house, plan this trip, and plan a whole house makeover........ughhhh I need a clone lol. Elves would be great too, maybe even a tinker or 2. I have all of the great pics on my camera just waiting to be shared and my desk is such a mess I cant find my cord waaaaaaaa :sad1:

YOU GUYS HAVE MY WORD TOMORROW I WILL PRODUCE SOME PICS!!!:wizard:

Alyssa is great!!! She is loving the season, Parades, tree lightings decorations ahhhh its just all here for her.

Her daddy got on the roof and put all of our Christmas stuff out, and now I have to put a tree up tomorrw. The terrrible part to that is that I know someone is going to have to take it down Thursday because our Hardwood floors are being redone. My neighbor who is a big part of this make over called my other friend tonight and was like OMG!!!! THEY HAVE EVERYTHING OUT!!!!! lol she has no idea that when she comes by tomorrow there will be a tree in the window lol, I feel terrible but If i dont do it Alyssa will be very suspicious. Im trying to lessen their load but I just cant help that part lol. My ears are burning though!!!:rotfl:

[Momofwishkid]

:scared1: You sure do have alot going on so we wont hold it against you for leaving us worried here. :goodvibes Im so glad your happy busy and having a good time.

[yinyanggirls]

Wow, you are crazy busy! Amazon.com is my shopping friend. ;) You can send different things to different addresses if you need to ship, and most purchases over 25 will qualify for FREE shipping. And they have every dept. you can imagine and usually good deals on lots of items. Seems like all the other sites have good deals too but if you are only getting one thing from each place the shipping can spoil it.
I can't believe your whole house is being redone! What a crazy month for you!:yay:

[pipersmom]

Holy guacamole girl! No wonder you haven't been on!! I hope you'll take pictures of Alyssa's face when she gets back and sees the house all re-done. You'll looove the floors! My bro and I re-habbed our trailer before Piper and I moved in and put down laminate floors throughout..it's soooo much easier, not to mention how much better it is for our kids' lungs! Only 3 more days for you!! I'm with Melissa on the online shopping!

[maroo]

oh my gosh!

what a crazy time around there!

I am so, so glad to hear you guys are doing ok!!! :)

[teresajoy]

YOU GUYS HAVE MY WORD TOMORROW I WILL PRODUCE SOME PICS!!!:wizard:

It sounds like you have been busy!!!

But, we really really NEEEEEEEED pictures!

You know, we are just needy like that! ;)

[kdzbear]

Wow! I am so excited for you! It is great that your friends and family are making over your house while you are gone! Your trip is coming up so quick! You can do some Christmas shopping at Disney! :santa:

[cajunfan]

It sounds like you have been busy!!!

But, we really really NEEEEEEEED pictures!

You know, we are just needy like that! ;)

I am with Teresa...I am a needy person too!;)

Lynn

[cantwaittoseemickey]

Me too! Can't wait to see pictures:)

[pacrosby]

:yay::yay::yay: So glad you are all ok!!! Yikes.....and I thought WE were busy!

Get packin' there and we'll see you in a few:cool1:

Pamela:santa:

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

[2cutekidz]

Subbing...I'm one of the needy ones ;)

[chrissid7]

Ok I will come back later hopefuuly and share where and who all of the people and places these super cool items were from. but with out further ado here are some pics. Sorry im rushing tonight but I made a promise and I keep em! lol

Also there are a few things that are on my oldest daughters camera, for some reason mine is really acting weird in certain lights as you will see, its no good in the dark now.... its really annoying me.

http://i646.photobucket.com/albums/uu190/chrissid72004/th_PICT0090.jpg (http://s646.photobucket.com/albums/uu190/chrissid72004/?action=view&current=PICT0090.jpg)
http://i646.photobucket.com/albums/uu190/chrissid72004/PICT0060.jpg
http://i646.photobucket.com/albums/uu190/chrissid72004/PICT0066.jpg
http://i646.photobucket.com/albums/uu190/chrissid72004/PICT0067.jpg
http://i646.photobucket.com/albums/uu190/chrissid72004/PICT0068.jpg
http://i646.photobucket.com/albums/uu190/chrissid72004/PICT0082.jpg
http://i646.photobucket.com/albums/uu190/chrissid72004/PICT0083.jpg


I do have more as I said and im sorry these werent better, but I can assure you she has been soooooo excited. Every person that came through her door got to see every single piece. Its was precious and I also have pics of my big kids including me who love love love their big give shirts.... We love and thank each and every one of you. If your stuff isnt on here, it will be soon I promise!

[chrissid7]

OMG Are you serious I did every pic wrong? Im working on it now folks lol!

[yinyanggirls]

Chrissi, did you copy the IMG code from Photobucket? The pics are not showing up. :confused3

[chrissid7]

Chrissi, did you copy the IMG code from Photobucket? The pics are not showing up. :confused3

I messed it all up im fixing em now sorry!

[chrissid7]

Something has changes since the last time I used photo bucket can someone remind me how to resize.

[pipersmom]

There they are! Sorry your camera is giving you fits hon! Waiting on my dial-up to load all the pics :headache: But she looks really happy in the first one..:lol:

[pipersmom]

Last time I was in there, I hit edit, then did the re-size in the edit mode. Try that, maybe?

[chrissid7]

Last time I was in there, I hit edit, then did the re-size in the edit mode. Try that, maybe?

Thanks that was it... ill be back after I fix em all lol!

[pipersmom]

You're welcome, hon! I'm glad that did the trick!

[chrissid7]

sheesh I was getting nervous lol. Ok now that I got something going here are a few more...

http://i646.photobucket.com/albums/uu190/chrissid72004/PICT0085.jpg we relly love the "green" bags... Alyssa wanted to know if I was jealous now lol.... I am, but she said we could share... thanks cajunfan for them and sooo much more

http://i646.photobucket.com/albums/uu190/chrissid72004/PICT0093.jpg how awsome that Salarina was such a huge part of the Big Give! This just had Alyssa beaming! The nurses thought it was funny how she was so happy when she opened her own outfits but when she got down to Salarinas she absolutely freaked!!

http://i646.photobucket.com/albums/uu190/chrissid72004/PICT0098.jpg can you believe all the goodies. What a great ending to a somewhat yucky day for her. She so needed all of this.... Love you guys!!!


http://i646.photobucket.com/albums/uu190/chrissid72004/PICT0108.jpg poor poor daddy.... I just had to throw that in there... awwwwww

[pipersmom]

What awesome stuff, and Alyssa looked so thrilled with it all...now you know you're going to have to take Salarina (where did she get that name, btw?) to at least one park with you!! You're almost to departure day! We are soooooooooo excited for you guys!! Hugs to you both! :hug:

[Momofwishkid]

Wonderful pics! Alyssa looks so happy with everything and of course Salarina also.

[pacrosby]

OMG the American Girl doll:rotfl: How terrific that she got chosen to be a recipient of the Big Give too!!!!!

We definately have to meet up......Liv and Alyssa are about the same age (Liv'll be 10 in March). They'd probably have fun together.

Don't tell dh but I laughed when I saw his picture. What's the matter.....is he feeling alittle neglected:lmao:

Pamela:santa:

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

[chrissid7]

OMG the American Girl doll:rotfl: How terrific that she got chosen to be a recipient of the Big Give too!!!!!

We definately have to meet up......Liv and Alyssa are about the same age (Liv'll be 10 in March). They'd probably have fun together.

Don't tell dh but I laughed when I saw his picture. What's the matter.....is he feeling alittle neglected:lmao:

Pamela:santa:

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


HAAAAA!!! Thats what I said while he was laying up in the ER teeheehee!!
Lets make plans too meet up... what day are you going to HS... Alyssa really likes the shows and that would be fun or MK would be great too lol.... heck we are spending the 10th at GKTW (after we hit wally world of course) that could be great too! It would be great for them to have a friend at the village I think!:hug:

[chrissid7]

oh my gosh!

what a crazy time around there!

I am so, so glad to hear you guys are doing ok!!! :)

I really hope we get to meet soon!

[pacrosby]

I think I've scheduled us (listen to me, 'Julie McCoy, cruise director':lmao:) for HS on Tuesday; MK the latter part of the day on Saturday and the middle of the day on Wednesday (Thursday the 17th we're at MVMCP but I think you're gone by then??). Like you, I think we will also hang most of the day at GKTW on the day of arrival, the 10th; and of course there's the GKTW Christmas Party that night (and the other GKTW evening parties). I don't think we'll have a problem hooking up. Are your older children going too?

Pamela:santa:

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

[teresajoy]

Thank you for the pictures!! They are a bit small, but thanks for posting them! I love the looks on Alyssa's face! :hug::hug::lovestruc:hug:

[maroo]

Woo Hoo for pictures! :)

Thank you so much for posting them! Things must be CRAZY at your house! :scared1:

The stuff looks awesome! I am so glad they included her "sister" Salarina! How cool is that!!

I am excited for your trip! You guys are going to have a great time!

And the picture of your poor DH! :rotfl2: :sick: :upsidedow

[kdzbear]

Great update with photos. You leave so soon! Have a wonderful trip! :wizard:

[chrissid7]

I think I've scheduled us (listen to me, 'Julie McCoy, cruise director':lmao:) for HS on Tuesday; MK the latter part of the day on Saturday and the middle of the day on Wednesday (Thursday the 17th we're at MVMCP but I think you're gone by then??). Like you, I think we will also hang most of the day at GKTW on the day of arrival, the 10th; and of course there's the GKTW Christmas Party that night (and the other GKTW evening parties). I don't think we'll have a problem hooking up. Are your older children going too?

Pamela:santa:

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


I have no doubt we will hook up at some point our schedules are very similar. We are alos hanging out at GKTW all day Thursday . Yes my teens will be there too and right now im not sure who is most excited lol!

[chrissid7]

Thank you for the pictures!! They are a bit small, but thanks for posting them! I love the looks on Alyssa's face! :hug::hug::lovestruc:hug:

Im still figuring it all out lol sorry for the tiny pics. I think I know now, so when I get home im going to get it straight. :headache:

[chrissid7]

Woo Hoo for pictures! :)

Thank you so much for posting them! Things must be CRAZY at your house! :scared1:

The stuff looks awesome! I am so glad they included her "sister" Salarina! How cool is that!!

I am excited for your trip! You guys are going to have a great time!

And the picture of your poor DH! :rotfl2: :sick: :upsidedow

Girl, im about to have a coronary!!! Keeping so many secrets, sneaking al around, but soooooooo super busy. My head is on upside down right now and I feel a lil sick to my stomach. I know its my nerves but sheesh I dont need nerves now too much to do!

All of the outfits for Salarina have been amazing and make her so happy (Salarina and Alyssa).

[chrissid7]

Sorry I forgot I could multi quote! Alyssa got another amazing package and it was a super duper cute dress from 2cutekidz, So bright and pretty and guess what???? There is a beautiful matching one for Salarina awwwwwww. We love it!!!! Ill post pics asap.:hug: Precious just precious.

Found out today some surprises for our "little" makeover. My husband is going to be 1 happy happy man. I cannot wait to share all of this with you guys!!!:dance3::dance3:

[cajunfan]

Yaeh! Pictures!

Alyssa looks so happy! Can't wait to see all of their faces when they get back to what sound like an awesome makeover for everyone!

Poor hubby! I hope he has mended well and is back to himself and ready for this awesome trip!

TAKE A DEEP BREATH! Remember to ENJOY!

Lynn

[cajunfan]

Only one more sleep!!!!

Have a GREAT trip!

[kdzbear]

So close! Have a fabulous time and remember to take time to relax and just enjoy the little moments! :wizard:

[pipersmom]

Make sure you get some sleep tonight! Have a wonderful time if I don't see you again before you leave!

[t-beri]

Hey! Starting to get worried about a package I sent last week. I sent it priority but lost the DC number. Have you received one from FL? Maybe something w/ mermaids?

[Momofwishkid]

Just wanted to stop in and say have a fabulous trip! It's almost time. Cant wait to hear about it when you return.

[chrissid7]

Hey! Starting to get worried about a package I sent last week. I sent it priority but lost the DC number. Have you received one from FL? Maybe something w/ mermaids?

Yesss!!! OMG!!! IM SO SORRY!!!! Those are the pics I was talking about when I said " if you dont see pics they are coming I promise" My camera was acting up and my daughter took them for me, but I was having truouble getting them too my computer. I promise I will get them up asap! SHE LOVESSSSSSSSSS The Ariel Skirts for her and Salarina!!! You did a fantastic job!!! I do still have pics from 2 more Big Givers and I will get them up!! Of course all heck breaks loose just when thisngs really get moving. Gotta scoot for now cause.... WERE GOING TO DISNEY IN 6 hours!!!!

[chrissid7]

Thank you everyone!!!!! This trip has already begun.... it began the day I found this board and I am so grateful to have met all of you! I couldnt have kept it together without all of your help!!

Im so excited to share our Journey with ya all!!! :grouphug:

[pipersmom]

Have a super, wonderful, fantabulous, awesome, spectacular, best trip ever! trip~!~! We are so excited for you guys, Piper was all about Alyssa today, and how you all are getting ready to leave!! Now go get some sleep!! :love: :hug: