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

[macntosh]

Well I updated with "The Experience"...

 

[maroo]

First of all - Hello everybody!!

I actually had to travel for work today, so I was not on the DIS! Tsk Tsk, I know.

But I am BACK!!

I am so excited to find this thread! I have not read all of the posts yet but I am so excited to be able to read about all the wish trips!

A little about my family and our wish trip:
We are a fmaily of 5 from Northern Maryland. My Oldest daughter Zoe, is our little wish Child. She has Biliary Atresia. I can honestly say that the good news that she was granted a wish could not have came at a better time for her. She has been struggling with bullying and children picking on her at school because of her medical issues (She spent just about a year stright in the hospital and because of it she is behind physically, She has speech issues, and because of her swollen liver, she has a large belly which just adds to the problems )

My other girls are 3 and 6.

Our Make A Wish experience started with her Doctor who to my suprise submitted her name. I got the call and about passed out from crying that day! Her wonderful Wish Granters arranged a meeting and Zoe made her wish! She had been to Disney 2 times prior so she knew exactly what she wanted to wish for! A DISNEY CRUISE! We got the call that the wish was approved and we applied for our passports. After a LONG haul to get them (Zoes bio father is not in her life nor does he have any custody) so just getting the passports were an issue! But they have been in hand for a little over 2 weeks now! We submited the passport numbers and exp. dates to make a wish and we are waiting now for the call with the dates!

Zoe is a specxial little girl in so many ways. She has a serious medical condition but never once has she asked "Why me" or never once has she choosen not to face each and every day with a smile. I am blessed with a beautiful and perfect little angel and I am so thankful that Make A Wish has choosen to allow her to make a very special wish! I know that the memories created on Zoes special trip will last a life time for her and us alike and i can only hope that it will help to pull her through the bad roads and times that may lay ahead!

We are so thankful you have found our thread!! You post ended up on the very end of page 99 and I am afraid it may have been overlooked by some of our regulars around here (I always click to the "Last" page and I tend to miss posts, too!)

Aw...I hate that she is getting bullied in school. And hugs to you both!!

Man, that is AWESOME that you got approved for a Cruise!!!! I had heard that they had been holding on to granting those with the economy...so that is excellent news for you guys and for future Disney Cruise Wishers!

We have a couple of threads on the boards from folks that did the Cruise! But I don't think any of them have finished the TR's yet...they are in process!

She sounds like a very special princess!! I know that this will be such a wonderful experience for your family!

I see that you are a DIS vet, so I am sure you know how to do a Trip Report or Pre-Trip Report if you would like! We would love to know more about your family and get excited with you as you plan!!!

Welcome to the Wish Thread!!!!!!!!!

Hi,

I am feeling blue, because of my dd's current school situations. My dd has a heart condition which has worsened in the last few months. She also has ADHD and anxiety issues. I had her tested two summers ago for autism, the doctor who tested her said she had ADHD and anxiety issues no real signs of autism. We had her tested because there were some red flags and with a big brother who has Asperger's syndrome we wanted to know and get it early. She is currently in second grade and is having more social issues and says know one likes her and wants to sit by her at lunch. This just breaks my heart she is such a sweetheart, but comes across as aggressive and loud and talkitive. My gut still thinks there is more going on than just ADHD and anxiety and feel she maybe high functioning autistic.

I just want to help her, but I do have some comfort since her brother had the same issues and has made hugh strides since second grade. A very tough grade for him also.

Sorry for going on, I guess I just needed to vent.. It doesn't help that it has been rainy for two days - quite depressing.

One good thing I did pick up two t-shirts for my dd and two for my ds and one for myself at the Disney store. Thanks to the person who said they were on sale for $3.99 for kids and there was an extra 25% OFF. So good deal for my dd shirts. My ds and mine were 3/$20. good deal.
I got my dd a tinkerbell and aerial t-shirts which she loved. I found a Jack Skellington t-shirt for my ds and he loved it and the best thing was it is gray not black like most of them.

Wow we have only 1 month and two weeks and 3 days until our Magical Trip - I guess I better get back to planning well maybe tomorrow anyway.

Diane

Bless your heart!! This is the perfect place to vent! Many of the families on this thread have been, or are right in, your shoes!

Diane,

What you just wrote about your daughter could have been written about me 50 years ago - story of my life. Never invited to the birthday parties, etc. I was finally diagnosed with ADD at the age of 50. Adder's are notorious for having poor social skills, not picking up on social cues from others, and so forth. However, social skills and "awareness" can be trained, to some degree, and I've been working hard on mine.

Fortunately for your daughter, she was diagnosed young - AND there are meds (what a blessing was Ritalin for me when I was still working) and methods of learning the social skills that weren't available 50 years ago. My granddaughter attended an after school social skills program. There are also camps and coaching. If you have a local chapter of CHADD or some other support group for parents of ADDers, that might be a place to start.

It *will* all work out, but it WILL take work. Good luck!

Oh, PS. Despite the undiagnosed ADD, many ups and downs through my teenage years and young adulthood, I managed to grow up, have a successful marraige, satisfactory career and a good life. Those same kids who shunned me at age 8, are, at our most recent (42nd) class reunion, warm friends.

Gosh...I had no idea about all of this...

Hugs to you, too, Linda!

We got home at 3:00am Thanks everyone!. They didn't want to keep him. I don't know if it was us being overzeolus or answer to prayer. But everything looks normal on the tests and they let us come home. We will call it an answer to prayer, and Praise God for letting him be well enough to come home.

I am so glad he is home and they didn't have to keep him!!!!

No wet diapers yesterday and two already this morning.

That is fabulous! Sounds like he is on the mend!!!

Longest running update ever, but I added the Tinkerbell "poop" story to our trip report.

Bathroom terror, coming up next....

I read this today from my iPhone, but have not been able to comment yet!!

Well I updated with "The Experience"...

Oh gosh!! I can't wait!!

 

[that's nice]

Maroo,
Are you all caught up now?????

 

[maroo]

Maroo,
Are you all caught up now?????

No!

I have about 6 more threads...and they keep lighting up again...

 

[Andreaswish]

Diane,

What you just wrote about your daughter could have been written about me 50 years ago - story of my life. Never invited to the birthday parties, etc. I was finally diagnosed with ADD at the age of 50. Adder's are notorious for having poor social skills, not picking up on social cues from others, and so forth. However, social skills and "awareness" can be trained, to some degree, and I've been working hard on mine.

Fortunately for your daughter, she was diagnosed young - AND there are meds (what a blessing was Ritalin for me when I was still working) and methods of learning the social skills that weren't available 50 years ago. My granddaughter attended an after school social skills program. There are also camps and coaching. If you have a local chapter of CHADD or some other support group for parents of ADDers, that might be a place to start.

It *will* all work out, but it WILL take work. Good luck!

Oh, PS. Despite the undiagnosed ADD, many ups and downs through my teenage years and young adulthood, I managed to grow up, have a successful marraige, satisfactory career and a good life. Those same kids who shunned me at age 8, are, at our most recent (42nd) class reunion, warm friends.

My Emma is having social issues too, I wonder about ADD or a non-verbal learning disorder, we will be doing neuro-psych testing with her this summer. I just wanted to say I understand!

Thank you all for responding, I am feeling a little better today. This evening my dd and I volunteered and made lunches for kids who need snacks or suppers after school. It really made me feel good and feel blessed that I am able to feed my kids daily. My dd did so well there and enjoyed helping others also, she can be so giving and caring. I just need to remind myself of all her good qualities and not dwell on all the negatives.

She is now a little sleeping angel in her bed.

Hopefully tomorrow will be a better day at school. We are counting the days left of school tomorrow will be 31 days. We leave for our trip 3 days after school gets out>

Diane

 

[tbelfonti]

Another GKTW question:

Anyone know if there's a CD player or a clock radio with MP3 input in the villas?

My girls use specific music to fall asleep to. I'm trying to decide if I need to bring my own MP3 player or if I can just bring along their CD.

Thanks!!!

 

[BeckySob]

Another GKTW question:

Anyone know if there's a CD player or a clock radio with MP3 input in the villas?

My girls use specific music to fall asleep to. I'm trying to decide if I need to bring my own MP3 player or if I can just bring along their CD.

Thanks!!!

You will probably have to bring your own MP3 player. I think there was a DVD player by the tv in the living room, but you would have to play it from there and the whole house will have to hear it too.

 

[5dwarves]

I am so excited to find this thread! I have not read all of the posts yet but I am so excited to be able to read about all the wish trips!

A little about my family and our wish trip:
We are a fmaily of 5 from Northern Maryland. My Oldest daughter Zoe, is our little wish Child. She has Biliary Atresia. I can honestly say that the good news that she was granted a wish could not have came at a better time for her. She has been struggling with bullying and children picking on her at school because of her medical issues (She spent just about a year stright in the hospital and because of it she is behind physically, She has speech issues, and because of her swollen liver, she has a large belly which just adds to the problems )

My other girls are 3 and 6.

Our Make A Wish experience started with her Doctor who to my suprise submitted her name. I got the call and about passed out from crying that day! Her wonderful Wish Granters arranged a meeting and Zoe made her wish! She had been to Disney 2 times prior so she knew exactly what she wanted to wish for! A DISNEY CRUISE! We got the call that the wish was approved and we applied for our passports. After a LONG haul to get them (Zoes bio father is not in her life nor does he have any custody) so just getting the passports were an issue! But they have been in hand for a little over 2 weeks now! We submited the passport numbers and exp. dates to make a wish and we are waiting now for the call with the dates!

Zoe is a specxial little girl in so many ways. She has a serious medical condition but never once has she asked "Why me" or never once has she choosen not to face each and every day with a smile. I am blessed with a beautiful and perfect little angel and I am so thankful that Make A Wish has choosen to allow her to make a very special wish! I know that the memories created on Zoes special trip will last a life time for her and us alike and i can only hope that it will help to pull her through the bad roads and times that may lay ahead!

Welcome to this thread...I see you have been on the dis for a while. My son also had biliary atresia. Today is his 3 year anniversary for transplant. We lived in No. Virginia when he was born, and later diagnosed with the disease, so we may have frequented some of the same hospitals (Georgetown, Fairfax and Johns Hopkins). I would be happy to share some of our liver disease/transplant experiences with you if you have any questions. I know that school can be rough for kids with illnesses that other children don't fully understand. When Adam got his transplant he was in Kindergarten. When I would visit the class prior to transplant they would ask me why he had monster eyes. His bilirubin levels were through the roof, and the whites of his eyes were fully yellow. His belly is MUCH smaller than it used to be prior to transplant. It is still not gone completely though, and won't be until he grows some more. His growth post transplant has really kicked in, and while he is still smaller than his brothers, he is gaining on him. Anyway...I'd be happy to PM or email you if you have any questions about our experiences with the disease, the meds, the fear of some of the meds, the fear of having to get a transplant then later the relief of getting a transplant... I know it is a rollercoaster ride. Welcome to the wish tripper's thread and congratulations on your cruise!

 

[5dwarves]

Maroo,
Are you all caught up now?????

I went back and looked and we started the month on page 70 and are now at 101...we are a chatty bunch. It can be hard to keep up

 

[maroo]

I went back and looked and we started the month on page 70 and are now at 101...we are a chatty bunch. It can be hard to keep up

This thread is actually the easy part! It is the Feb TR I am trying to write, the Sept trip I am planning (followed by Dec and then Jan...lol), and 120 other thread subscriptions I have! Planners. Big Give. I am so obsessed!!

I actually have subscribed to every single Wish trip and pre-trip and try to keep up those threads, too. And I have a few "regular" pre-trippies and TR's that I actually follow, too. I know...addicted...seriously. I am glad I only have a dog.

I am also glad today is my "United Healthcare" day at work...I stay on hold most of the day and can DIS as I listen to this hold music and talk to my "friends" in India that work for UHC.

 

[that's nice]

I went back and looked and we started the month on page 70 and are now at 101...we are a chatty bunch. It can be hard to keep up

Maroo told me about this thread about a month ago. This thread has been moving quite quickly. It is so nice that people share their experiences and try to help out others who are going through the same or similar situations. While my DD hasn't been on her wish trip yet(haven't spoken to MAW yet) some day in the near future she will be. Its actually refreshing to be a part of this thread with all the positive energy(even when things aren't going as planned for a few families) than to read some of the back and forth banter (while at times fun) around the other parts of the boards. Reading other families stories really puts into perspective what's important. While I don't post all the time on here I do read it every day and have been following a few families PTR & TR's. I'm up to about 30 TR's and I get behind sometimes trying to follow all of them.

I just want to thank all of you for being so open and being very civil and friendly.

(OK.... Time to find a thread about tipping)

Tim

 

[BeckySob]

This thread is actually the easy part! It is the Feb TR I am trying to write, the Sept trip I am planning (followed by Dec and then Jan...lol), and 120 other thread subscriptions I have! Planners. Big Give. I am so obsessed!!

I actually have subscribed to every single Wish trip and pre-trip and try to keep up those threads, too. And I have a few "regular" pre-trippies and TR's that I actually follow, too. I know...addicted...seriously. I am glad I only have a dog.

I am also glad today is my "United Healthcare" day at work...I stay on hold most of the day and can DIS as I listen to this hold music and talk to my "friends" in India that work for UHC.

You are a WONDER WOMAN! I don't know how you do it!!! Now that I know how to subscribe, I can faithfully follow others!! I managed to subscribe to this thread a while back, but just didn't remember how. There went my memory thing again. I think I need Ginko Biloba or whatever it was, i forgot!

 

[AmberGreenawalt]

We changed our dates for Disney....

We are now going September 19th-27th! Since we changed dates we were able to get Coronado Springs AND the best part is my BFF and her three kiddos are joining us! We are trying to get adjoining rooms.

SOOOOOOOO looking forward to this trip and all the planning.

With the new ADR rules I can't plan much yet. June 21st is my day to call at 7:00 a.m.--- Going to try for Cindy's this time since we are on the free dining plan...LOVE it!

Must contact all you Disboutique ladies to send some bussiness your way. I have to have matching outfits for each day you know

A little family update: Sebastian is doing great! His last set of images for his arm tumor looked awesome! Healing very nicely. We'll get a look at his noggin tumor in June. Savannah's having an EKG tomorrow and seeing a Nuerologist next week. We are working on getting everything ready for her to see a Mitochondrial Expert, Dr. Shoffner, for a muscle biopsy in Atlanta. She just starting on her gagillionth course of antibiotics for yet another infection...she remains bright eyed and happy. I had the pleasure of having a CT myself last week that showed enlarged lymph nodes. That plus hematuria (every day) chest pain, night sweats and a family history of lymphoma = me worried. Could just be an infection right? I go to a new doc next week too.

Hope everyone else out there is doing well. The weather has been LOVELY here. Hope you'r is too! Much love!

p.s. Maroo, I joined your blog!!!

 

[maroo]

We changed our dates for Disney....

We are now going September 19th-27th! Since we changed dates we were able to get Coronado Springs AND the best part is my BFF and her three kiddos are joining us! We are trying to get adjoining rooms.

SOOOOOOOO looking forward to this trip and all the planning.

With the new ADR rules I can't plan much yet. June 21st is my day to call at 7:00 a.m.--- Going to try for Cindy's this time since we are on the free dining plan...LOVE it!

Must contact all you Disboutique ladies to send some bussiness your way. I have to have matching outfits for each day you know

A little family update: Sebastian is doing great! His last set of images for his arm tumor looked awesome! Healing very nicely. We'll get a look at his noggin tumor in June. Savannah's having an EKG tomorrow and seeing a Nuerologist next week. We are working on getting everything ready for her to see a Mitochondrial Expert, Dr. Shoffner, for a muscle biopsy in Atlanta. She just starting on her gagillionth course of antibiotics for yet another infection...she remains bright eyed and happy. I had the pleasure of having a CT myself last week that showed enlarged lymph nodes. That plus hematuria (every day) chest pain, night sweats and a family history of lymphoma = me worried. Could just be an infection right? I go to a new doc next week too.

Hope everyone else out there is doing well. The weather has been LOVELY here. Hope you'r is too! Much love!

p.s. Maroo, I joined your blog!!!

Amber!!!!

New friends, let me introduce you to Amber! Amber's son Sebastian is a wish child and they went to Disney in 08! Welcome back to the fold, Amber!

I am so excited you are headed back to Disney. I can't believe we will miss each other by just 6 days!!!

I have been following your blog and praying for your family on a mostly daily basis. There is never a dull moment!

Amber's blog is greenawaltfamilylife.blogspot.com and I know she would love for you to join right in!

I hope you guys get answers for what is going on with Savannah very, very soon and hope they can get you figured out, too! They need to get on the stick with that. I don't like the night sweats. Are they the soaking - now I have to change clothes - type of night sweats?

Amber has one of the most active blogs I have ever seen. She is a photographer and a great storyteller.

Anyway! Welcome back!!!

 

[maroo]

You are a WONDER WOMAN! I don't know how you do it!!! Now that I know how to subscribe, I can faithfully follow others!! I managed to subscribe to this thread a while back, but just didn't remember how. There went my memory thing again. I think I need Ginko Biloba or whatever it was, i forgot!

I promise I am not wonder woman! And I have no life...that is how I do it! No kids. Just a dog!

Oh no...subscribing can be very, very dangerous!

"Gingko Biloba whatever"...now that is just full on funny!

 

[AmberGreenawalt]

We changed our dates for Disney....

We are now going September 19th-27th! Since we changed dates we were able to get Coronado Springs AND the best part is my BFF and her three kiddos are joining us! We are trying to get adjoining rooms.

SOOOOOOOO looking forward to this trip and all the planning.

With the new ADR rules I can't plan much yet. June 21st is my day to call at 7:00 a.m.--- Going to try for Cindy's this time since we are on the free dining plan...LOVE it!

Must contact all you Disboutique ladies to send some bussiness your way. I have to have matching outfits for each day you know

A little family update: Sebastian is doing great! His last set of images for his arm tumor looked awesome! Healing very nicely. We'll get a look at his noggin tumor in June. Savannah's having an EKG tomorrow and seeing a Nuerologist next week. We are working on getting everything ready for her to see a Mitochondrial Expert, Dr. Shoffner, for a muscle biopsy in Atlanta. She just starting on her gagillionth course of antibiotics for yet another infection...she remains bright eyed and happy. I had the pleasure of having a CT myself last week that showed enlarged lymph nodes. That plus hematuria (every day) chest pain, night sweats and a family history of lymphoma = me worried. Could just be an infection right? I go to a new doc next week too.

Hope everyone else out there is doing well. The weather has been LOVELY here. Hope you'r is too! Much love!

p.s. Maroo, I joined your blog!!!

Amber!!!!

New friends, let me introduce you to Amber! Amber's son Sebastian is a wish child and they went to Disney in 08! Welcome back to the fold, Amber!

I am so excited you are headed back to Disney. I can't believe we will miss each other by just 6 days!!!

I have been following your blog and praying for your family on a mostly daily basis. There is never a dull moment!

Amber's blog is greenawaltfamilylife.blogspot.com and I know she would love for you to join right in!

I hope you guys get answers for what is going on with Savannah very, very soon and hope they can get you figured out, too! They need to get on the stick with that. I don't like the night sweats. Are they the soaking - now I have to change clothes - type of night sweats?

Amber has one of the most active blogs I have ever seen. She is a photographer and a great storyteller.

Anyway! Welcome back!!!

Thanks for that Maroo!!!

Good to drop by. I must make it a point to check in more often. So many people were such a HUGE help to me in the planning of our SUPER-FABULOUS-INCREDIBLY-AMAZING Wish Trip that I NEED to pay it forward...I also need life to level out a little bit. At the moment keeping up with my piddly little corner of the blogosphere is daunting enough.

to answer your question Maroo, not the soaking wet kind, just the waking up sweaty a couple times a night kind...hopefully just overthinking it...could just need the fan on LOL But the blood is not in my imagination...I have some dip sticks that show, glucose, protien, ketones, lymphocytes etc....and blood is there every time.

Are there any other Mito folks out there??? Looking for someone's brain to pick about Savannah.

I often think I was meant to find this thread last year because of the awesome wealth of knowledge and support the people have added to my life...Maroo, Cathy, Carol, Alison, Nichole, Linda, Linda, Heather, Jeanne, Benita, Matt, Tom, Kim, Dana, Tracy....everyone on here is AWESOME!!!!

 

[maroo]

Thanks for that Maroo!!!

Good to drop by. I must make it a point to check in more often. So many people were such a HUGE help to me in the planning of our SUPER-FABULOUS-INCREDIBLY-AMAZING Wish Trip that I NEED to pay it forward...I also need life to level out a little bit. At the moment keeping up with my piddly little corner of the blogosphere is daunting enough.

to answer your question Maroo, not the soaking wet kind, just the waking up sweaty a couple times a night kind...hopefully just overthinking it...could just need the fan on LOL But the blood is not in my imagination...I have some dip sticks that show, glucose, protien, ketones, lymphocytes etc....and blood is there every time.

Are there any other Mito folks out there??? Looking for someone's brain to pick about Savannah.

I often think I was meant to find this thread last year because of the awesome wealth of knowledge and support the people have added to my life...Maroo, Cathy, Carol, Alison, Nichole, Linda, Linda, Heather, Jeanne, Benita, Matt, Tom, Kim, Dana, Tracy....everyone on here is AWESOME!!!!

Thanks!

I have been following your blog and thought I was going to have to "come over there" the other day. People. What was up with that. I digress!!!!!

I don't know of any Mito kids on here right now. We have several diagnosed with Chromosome deletions, cancer, CF, etc but I have not seen any Mito. I wish they could get Savannah all figured out. The unknown must feel worse than a diagnosis, honestly.

I hope, once life settles down, that you are able to blog about your Disney trip (you can just put a link here if you don't want to copy it over twice) before your memory fades. But seriously no pressure! I know things are crazy right now.

It does make me feel better that it is not soaking sweats. That was one thing with Lisa last month that they told us...because we thought her night sweats were the "bad" kind and they weren't severe enough. Her tests turned out fine (besides her broken leg, which honestly was a relief after the big C word). I hope they get you figured out, too!

 

[ndloewen]

We changed our dates for Disney....

We are now going September 19th-27th! Since we changed dates we were able to get Coronado Springs AND the best part is my BFF and her three kiddos are joining us! We are trying to get adjoining rooms.

SOOOOOOOO looking forward to this trip and all the planning.

With the new ADR rules I can't plan much yet. June 21st is my day to call at 7:00 a.m.--- Going to try for Cindy's this time since we are on the free dining plan...LOVE it!

Must contact all you Disboutique ladies to send some bussiness your way. I have to have matching outfits for each day you know

A little family update: Sebastian is doing great! His last set of images for his arm tumor looked awesome! Healing very nicely. We'll get a look at his noggin tumor in June. Savannah's having an EKG tomorrow and seeing a Nuerologist next week. We are working on getting everything ready for her to see a Mitochondrial Expert, Dr. Shoffner, for a muscle biopsy in Atlanta. She just starting on her gagillionth course of antibiotics for yet another infection...she remains bright eyed and happy. I had the pleasure of having a CT myself last week that showed enlarged lymph nodes. That plus hematuria (every day) chest pain, night sweats and a family history of lymphoma = me worried. Could just be an infection right? I go to a new doc next week too.

Hope everyone else out there is doing well. The weather has been LOVELY here. Hope you'r is too! Much love!

p.s. Maroo, I joined your blog!!!

Welcome back Amber! I've been faithfully keeping up with your blog and praying for you all. Hope things settle down medically for your family soon. We've been tossing around a Mito diagnosis with Noah for the past year. Nothing confirmed, just lots of suspicions. It would explain alot of things for us, yet, we don't know what could be mito and what could be the chromosome deletion. No fun to be in the dark about these things, I know. Anyways, I have a bit of knowledge about it. He is on IV Carnitine, in case it's a mito issue. We've had a skin biopsy done, however, we are still looking for a lab who will run the tests on it. Mayo clinic no longer does some of them.

Oh, I SO wish we were going for free dining!! We are tossing around the idea of a trip to California this summer to use our world passport. I am so in need of a holiday already!!

 

[LindaBabe]

Hang tough, Amber. This time too, shall pass. And my other fav - 'that which doesn't kill us makes us stronger'. YOU are Steel already, Babe!

 

[keetmommy]

Ok I am going to cry...Emma got a post card from "Princess Jasmine"--these make a wish people really know how to make this magic dont that????