Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[pipersmom]

If you do March...let me give you some good dates.

You may want to sorta steer clear of the large Spring Break crowds. So normally early March is better. Of course...it can be cool in March. But it is hot enough in FL sometimes to swim. Especially if you are from further North.

Isn't VA the south? I can't ever remember if you guys WANT to be called Southern or want to be called Northern?

I absolutely love hanging on the wish trippers thread! These families are awesome and I have made several friends that I believe I will have for LIFE!

The thing I love about this thread...even more than planning the Disney stuff...is the life stuff we all get to share. It is very nice to find people you can relate to!

*laughing* The part of Va I'm in is technically considered the South, but I don't claim it, I was born in Mass and our extended family all live in Maine. I think once you go much farter north than richmond .. or east toward DC, those people all consider themselves Northerners. Who knows, I'm just always glad I'm not from WEST Va Just teasing..... (mostly)

 

[wkualum]

*laughing* The part of Va I'm in is technically considered the South, but I don't claim it, I was born in Mass and our extended family all live in Maine. I think once you go much farter north than richmond .. or east toward DC, those people all consider themselves Northerners. Who knows, I'm just always glad I'm not from WEST Va Just teasing..... (mostly)

Welcome to the Dis! Maroo is correct -- the families here are the best. And SHE is the best!!

Can't wait to hear all about your process and how surprised Piper will be. She's planning for 10. Mom is planning at 8

 

[myasma]

Hi everyone, I just wanted to stop by and thank everyone for the kind remarks left on Mya's caring bridge. Haven't had a chance to stop by because its easier to update on her site. Mya is doing great with her pain patch and hasn't experienced any pain in a whole day. Wendsday she starts her new protocol and hopefully it will kick her cancer's butt. Also welcome all new wish trippers. You will have a great time and this thread is great for information. I am really glad we got to go on Mya's wish trip before she got really sick. She remembers going and still asks me can she go back. Now I can look back on those memories and know how special it was to give Mya that chance to really be a kid again.

 

[wkualum]

We are back. It was a great, sometimes upsetting (lost camera on first day), but still magical trip. Hope to start TR soon, but I have to down load pics from GKTW, and get others from brother. (Thank goodness he had his camera) I also need to start Photopass.

Going to bed now, talk to you all soon.

Welcome home!! Although I hate that you lost your camera I'm totally stoked you still had a very magical trip. Can't wait to read your TR. We're just 3 weeks out so these TRs are even more exciting for me to read!!

 

[wkualum]

Hi everyone, I just wanted to stop by and thank everyone for the kind remarks left on Mya's caring bridge. Haven't had a chance to stop by because its easier to update on her site. Mya is doing great with her pain patch and hasn't experienced any pain in a whole day. Wendsday she starts her new protocol and hopefully it will kick her cancer's butt. Also welcome all new wish trippers. You will have a great time and this thread is great for information. I am really glad we got to go on Mya's wish trip before she got really sick. She remembers going and still asks me can she go back. Now I can look back on those memories and know how special it was to give Mya that chance to really be a kid again.

Glad to hear Mya was pain free last night! That is so great to hear! I'm sorry the princess is dealing with constipation. Mikaela has dealt with that her whole life and Mirlax has been a lifesaver for us. Hopefully it kicks in soon for Mya -- but then you'll have other problems to deal with if ya know what I mean. I hope that you and Mya enjoy your time away from the hospital today and have a restful night!

Shari

 

[maroo]

*laughing* The part of Va I'm in is technically considered the South, but I don't claim it, I was born in Mass and our extended family all live in Maine. I think once you go much farter north than richmond .. or east toward DC, those people all consider themselves Northerners. Who knows, I'm just always glad I'm not from WEST Va Just teasing..... (mostly)

One of my best friends is from *ahem* WEST VA. I keep saying, "Virginia" and she always corrects me...WEST Virginia!

Don't worry...I don't take offense on her behalf! In fact...she is now in South Africa...so I am sure she really doesn't care so much anymore. Although she always said they were from the South.

Being from MS...there is no doubt I am from the South... I hear I have a strong accent.

I am glad you are here!

Welcome to the Dis! Maroo is correct -- the families here are the best. And SHE is the best!!

Can't wait to hear all about your process and how surprised Piper will be. She's planning for 10. Mom is planning at 8

Thank you for your sweet compliment.

I agree...I think 8 is the perfect age for Disney!

Hi everyone, I just wanted to stop by and thank everyone for the kind remarks left on Mya's caring bridge. Haven't had a chance to stop by because its easier to update on her site. Mya is doing great with her pain patch and hasn't experienced any pain in a whole day. Wendsday she starts her new protocol and hopefully it will kick her cancer's butt. Also welcome all new wish trippers. You will have a great time and this thread is great for information. I am really glad we got to go on Mya's wish trip before she got really sick. She remembers going and still asks me can she go back. Now I can look back on those memories and know how special it was to give Mya that chance to really be a kid again.

We are praying for Mya. I have sent some of my friends over to your page, too...from another Disney board. So...there may be some people you don't recognize...but I figure the more encouragement you have...the better!!

 

[Matt1026]

Hi everyone, I just wanted to stop by and thank everyone for the kind remarks left on Mya's caring bridge. Haven't had a chance to stop by because its easier to update on her site. Mya is doing great with her pain patch and hasn't experienced any pain in a whole day. Wendsday she starts her new protocol and hopefully it will kick her cancer's butt. Also welcome all new wish trippers. You will have a great time and this thread is great for information. I am really glad we got to go on Mya's wish trip before she got really sick. She remembers going and still asks me can she go back. Now I can look back on those memories and know how special it was to give Mya that chance to really be a kid again.

Glad to hear Mya had a pain free day. I wish you the best!!!! We pray that new protocol does kick that cancer's butt.

 

[Matt1026]

Welcome Amanda.

Can't wait to hear some more. My son also has CF.



We are back. It was a great, sometimes upsetting (lost camera on first day), but still magical trip. Hope to start TR soon, but I have to down load pics from GKTW, and get others from brother. (Thank goodness he had his camera) I also need to start Photopass.

Going to bed now, talk to you all soon.

Welcome Back!!!! Can not wait to hear your TR. I hope you have a better start than me. I am so behind on my TR.

 

[pipersmom]

Long day..Piper's first "official" day of school will be tomorrow, as she missed the first two weeks being at "club med" and spent the last week and a half at home on IV's. We've been keeping up with her work at home, but I think she's still going to have somewhat of a rude awakening. She's gotten all used to one-on-one adult attention again ( at UVa they actually have a hospital school and a teacher who works with her one-on-one in her room..ohh la la.. and art and music therapists). Seeing how she does back in a real classroom should be interesting. When she gets ready to be discharged, I always have to bribe her with a stop for ice cream, she never wants to leave.. I'm just glad she's always so upbeat. At any rate, keep your fingers crossed for her please....:

 

[Terry718]

Hello all
Piper was diagnosed with CF (Cystic Fibrosis) when she was about four months old. At the time she was diagnosed she had pneumonia and a partially collapsed lung (that's a looooong story, suffice it to say we switched Peds after that happened!). Once she was diagnosed a lot of things I hadn't thought tooo much about made a lot of sense (slow weight gain, extremely ermm..pungent..lol.. bowel movements, etc.) For a while she did reasonably well, having visits to "club med" (the hospital) about twice a year for IV antibiotics. The last few years have been a lot harder, last year she missed about four months of school between being in the hospital, and doing IVs at home. She did finally have a port "installed" and that has made life somewhat easier, though she still completely panics when she knows it's time to access it. (We started at 3 adults to keep her still and get accessed, and we're down to two, so I guess I should be happy..lol) *

Hi Amanda - My name is Terry and it seems we have an awful lot in common so I wanted to wish you a quick welcome! I am in the whirlwind of preparing for our MAW trip on Saturday so forgive me if I sound hurried or scattered.

My son Richard just turned nine. He also has CF but diagnosed much, much later than he should have been but that's a whole different story. I just wanted you to know we visit Club Med often also. Typically, we're there for IV antibiotics and steroids. We stay at least three times each winter. In May we were supposed to have a port placed but I chickened out and asked that we try a PICC line. Big mistake for many reasons, first it was placed too deep into his heart and the following day he was in V-tach, then it got blocked, etc. Suffice it to say we're going with the port this winter.

I just wanted you to know you're not alone with your struggles. Rich has also missed months of school being home on IV treatment. He does so well academically but I worry about his social development being around adults so much. Anyway - I've said too much, I know. Its just sometimes I feel so alone in all this, I wanted to reach out to you and let you know someone else knows what you're going thru.

Well, I should be off packing or planning or doing something! You'll find the more you visit here, the harder it is to pull away! Have a Great Day!

 

[Terry718]

Hi everyone, I just wanted to stop by and thank everyone for the kind remarks left on Mya's caring bridge. Haven't had a chance to stop by because its easier to update on her site. Mya is doing great with her pain patch and hasn't experienced any pain in a whole day. Wendsday she starts her new protocol and hopefully it will kick her cancer's butt. Also welcome all new wish trippers. You will have a great time and this thread is great for information. I am really glad we got to go on Mya's wish trip before she got really sick. She remembers going and still asks me can she go back. Now I can look back on those memories and know how special it was to give Mya that chance to really be a kid again.

I just wanted you to know I pray for you and your little princess every day and I am so happy that she is without pain. I will keep good thoughts and continue to pray that this new protocol is the miracle Mya needs.

 

[maroo]

Long day..Piper's first "official" day of school will be tomorrow, as she missed the first two weeks being at "club med" and spent the last week and a half at home on IV's. We've been keeping up with her work at home, but I think she's still going to have somewhat of a rude awakening. She's gotten all used to one-on-one adult attention again ( at UVa they actually have a hospital school and a teacher who works with her one-on-one in her room..ohh la la.. and art and music therapists). Seeing how she does back in a real classroom should be interesting. When she gets ready to be discharged, I always have to bribe her with a stop for ice cream, she never wants to leave.. I'm just glad she's always so upbeat. At any rate, keep your fingers crossed for her please....:

I hope she has a great day at school today!!!

Let us know how it went!

 

[Rowlf]

I hope things go well for Piper at school and I'm so glad to hear that Mya had a good night!

I'm from Virginia, with the last 15 years in Northern Virginia, and I definitely consider myself a Southerner. Well, actually, just a Virginian, as that identity overrides the Southernness. We owned a cabin in West Virginia as well, before we moved to California, and Wes used to tell everyone we were from West Virginia when we first moved to California. I had to put a stop to that!

I'm a bit concerned - we don't have any details other than our flights down and being told that we'll be going to Discovery Cove, Sea World, and AK. I want to do some planning, but I can't do that without dates of the specific plans. I just heard from our granters that they want to do a presentation a week before we go; I don't want to be annoying or ungrateful, but I'd really like to get tickets for MNSSHP and a few ADRs. Should I just take my chances on MNSSHP and just make some ADRs and cancel them if I can't use them? I'm thinking that's the route we'll go.

 

[maroo]

I hope things go well for Piper at school and I'm so glad to hear that Mya had a good night!

I'm from Virginia, with the last 15 years in Northern Virginia, and I definitely consider myself a Southerner. Well, actually, just a Virginian, as that identity overrides the Southernness. We owned a cabin in West Virginia as well, before we moved to California, and Wes used to tell everyone we were from West Virginia when we first moved to California. I had to put a stop to that!

I'm a bit concerned - we don't have any details other than our flights down and being told that we'll be going to Discovery Cove, Sea World, and AK. I want to do some planning, but I can't do that without dates of the specific plans. I just heard from our granters that they want to do a presentation a week before we go; I don't want to be annoying or ungrateful, but I'd really like to get tickets for MNSSHP and a few ADRs. Should I just take my chances on MNSSHP and just make some ADRs and cancel them if I can't use them? I'm thinking that's the route we'll go.

We had some of these issues when we were going...

They wanted to "do it all" to keep the family from having to plan anything...a "worry free vacation"...

I finally talked them into giving us some details so that we could make ADR's...

You would think the MAW folks would have planned so many trips that they would know about ADR's and such...but most of them are great at planning the MAW/GKTW stuff...but if they have never been to Disney or on the DIS, they may have no idea what other things there are to do and the necessity of making ADR's.

I have forgotten your dates...

But are there multiple evening options for going to MNSSHP? If so...and if they are not close to Halloween...(Halloween is already sold out, so I am sure the ones surrounding Halloween may sell out as well)...One option is to just wait till right before you go...even the week before and then purchase tickets.


When we went...We had our tickets for the Thursday night MNSSHP. But when I looked at the weather the week before - it was for showers on Thursday and Tuesday's weather looked great. So...we ended up going on Tuesday (yes-we bought TWO sets of tickets!).

So...you could wait till closer to...check the weather...and then buy them. They are considered "advance purchase" as long as you do it a few days before (not sure when that cuts off) and they can have them ready for you at the will call window at the MK.


Oh...and regarding your ADRs....

I would get as many as you can...and just cancel the ones you won't need. I normally would not suggest that for a family going on a typical trip - but in this case...you have someone else planning events for you and you just can't know what evenings they are planning...
SO get all the ADR's you can and just cancel them as soon as you know something.

 

[wkualum]

we received our first Big Give package today and it was great! Thanks to Dani C for the great gift. We are truly blessed!

Check out Mikaela's trip report for some pictures.

We're under 20 days now! Yippeeeeee!!

 

[pipersmom]

Hi Amanda - My name is Terry and it seems we have an awful lot in common so I wanted to wish you a quick welcome! I am in the whirlwind of preparing for our MAW trip on Saturday so forgive me if I sound hurried or scattered.

My son Richard just turned nine. He also has CF but diagnosed much, much later than he should have been but that's a whole different story. I just wanted you to know we visit Club Med often also. Typically, we're there for IV antibiotics and steroids. We stay at least three times each winter. In May we were supposed to have a port placed but I chickened out and asked that we try a PICC line. Big mistake for many reasons, first it was placed too deep into his heart and the following day he was in V-tach, then it got blocked, etc. Suffice it to say we're going with the port this winter.

I just wanted you to know you're not alone with your struggles. Rich has also missed months of school being home on IV treatment. He does so well academically but I worry about his social development being around adults so much. Anyway - I've said too much, I know. Its just sometimes I feel so alone in all this, I wanted to reach out to you and let you know someone else knows what you're going thru.

Well, I should be off packing or planning or doing something! You'll find the more you visit here, the harder it is to pull away! Have a Great Day!

Terry,

It does sound like we have a lot in common, I'll look forward to speaking with you when you get back from your trip.. (I know you're busy now getting ready.) I know you'll have a wonderful time. On a side note, Piper had her port placed almost a yr ago now, and I haven't regretted it for a single moment, it's made both of our lives soooo much easier. I'd be more than happy to answer any questions you have when you get back : )

 

[pipersmom]

I hope she has a great day at school today!!!

Let us know how it went!

I hope things go well for Piper at school and I'm so glad to hear that Mya had a good night!

I'm from Virginia, with the last 15 years in Northern Virginia, and I definitely consider myself a Southerner. Well, actually, just a Virginian, as that identity overrides the Southernness. We owned a cabin in West Virginia as well, before we moved to California, and Wes used to tell everyone we were from West Virginia when we first moved to California. I had to put a stop to that!

I'm a bit concerned - we don't have any details other than our flights down and being told that we'll be going to Discovery Cove, Sea World, and AK. I want to do some planning, but I can't do that without dates of the specific plans. I just heard from our granters that they want to do a presentation a week before we go; I don't want to be annoying or ungrateful, but I'd really like to get tickets for MNSSHP and a few ADRs. Should I just take my chances on MNSSHP and just make some ADRs and cancel them if I can't use them? I'm thinking that's the route we'll go.

Thanks for the positive thoughts..when I asked how her day went today she actually said "awesome", which is definitely a good thing. She was excited about how nice her teacher is as well, which is a nice change from last year. (Her teacher last year had an iron fist in an iron glove, from what I've seen of her new teacher, she's a bit more gentle.)

(Piper wanted bananas..and now to send her off to bed...)

 

[Rowlf]

Thanks for the positive thoughts..when I asked how her day went today she actually said "awesome", which is definitely a good thing. She was excited about how nice her teacher is as well, which is a nice change from last year. (Her teacher last year had an iron fist in an iron glove, from what I've seen of her new teacher, she's a bit more gentle.)

(Piper wanted bananas..and now to send her off to bed...)

I'm so glad she had a good day! It's amazing how much we appreciate our kids having a good day when they have so many other tough times, isn't it?

 

[maroo]

I am about to post this in about four places...

So if this is a duplicate, please disregard - or pray twice

Lauren - my dear friend with severe CP - has the swine flu. Despite our best efforts to prevent it.

I am very, very nervous about this. We have lost several kids in MS to this flu this year and with her underlying conditions, this can be very serious.

She started Tamiflu last night because William (her little brother) already has it...so that is good.

Please pray for them!!

 

[keetmommy]

I am about to post this in about four places...

So if this is a duplicate, please disregard - or pray twice

Lauren - my dear friend with severe CP - has the swine flu. Despite our best efforts to prevent it.

I am very, very nervous about this. We have lost several kids in MS to this flu this year and with her underlying conditions, this can be very serious.

She started Tamiflu last night because William (her little brother) already has it...so that is good.

Please pray for them!!

I am sorry to hear she has it, hope the Tamiflu works...this is a HUGE fear of mine this winter!