Wish Trippers...Unite!! Volume One

[bigdisgrandma]

Hello everyone! I have been hiding out for a little while there. Glad to see new members popping in.
We are at our 2 week mark! YEAH! Time for the true stress to hit me!! We just found out that our wish team volunteer who is a couple, her husband became ill so we are pretty bummed but she is still going to give us our paper work and call this week but it is unlikely that we are going to have a going away party.
Any traveling tips? It will be a 5 hour + flight with a 6 and a 4 year old so I am a little worried on how to keep them busy. We have only been on a 1 hour flight a while back and even that was tough.
Thanks

Sorry about your wish granter becoming ill. You might want to take the kids to McDonalds for a little celebration when you get to the one week mark and say "Hooray, only one more week until it's MICKEY TIME!"

We have almost as long a flight as you do, 4 1/2 hours and so we are using the activity things that Amber sent, Nintendo DS for Brody, Coloring pages and other coloring books that we have been putting together, some books and games that Karlyn received from her wish granters and a DVD player because the movie on the plane is not a great kids movie! We are also taking snacks and treats for us all because we are a munchy kind of a group.


Denise

 

[NicoleDisneyFan]

Thanks Denise. I need to make a note to myself to pick up a dvd player. I need to start a carry on bag for the kids with books and coloring supplies.

By the way, I wrote on my pre trip report about cold stone having a make a wish day on September 25th and you get a free ice cream. We just came back and got the creation from Jack's and boy oh boy was it good!!! I am a diabetic but I had to treat myself and it was worth it! You can go anytime now and make a donation and they give you a paper to write anything you like. I love giving back and think it is the least I can do for another child who is going on a wish trip.

 

[maroo]

I just wanted to say I thought this post has helped me great with our planning.

My son ian is going on his make a wish trip in november the little guy is so excited. I been trying to get chef mickey for him but we have not had any luck yet.

Hello Zeppy...

If you need any help with the website, you can check out the "technical" section. It is located at the very bottom of the main page...you can follow those links. It will tell you how to post pictures and write trip reports and stuff.

I am so excited for you guys. You are going to have a BLAST! I have had so much fun planning! And will have so much fun in DISNEY!

 

[maroo]

I am not sure how many of you guys are Christians...but I have seen several of you guys ask for prayer...so here goes.

Richard (Lauren's Dad) is a brittle diabetic. (Lauren is the Wish Teen, for those that may not know.) He has had diabetes since he was 5, I think. Anyway...his blood sugar can drop really fast for no apparent reason. Tonight he checked his blood sugar before he went running and it was fine. He was running with his 9-year-old son, William (Lauren's little brother) and basically fell out from low blood sugar. He was passed out in the middle of the street. William had to flag down a car (they live in a rural area) and the police and ambulance were called. Richard is fine! Thank the Lord. (and believe me, we are thanking Him tonight!) But William already has stomach ulcers and other issues related to stress in his world...please pray for him. The people in the car that he flagged down said that he was a HERO for getting help for his dad. But he just feels the stress of everything (disabled sister, diabetic father, etc). Anyway, please pray for him.

On a similar note.. How do you guys handle siblings? This is Lauren's wish trip...and the very nice people at MAW have said to make sure the trip is about her... but what do you guys do for the siblings? How do you handle the "Lauren is getting all the attention" deal? How do you balance having a trip that celebrates Lauren and not have William feel left out, yet again? Any thoughts on that? I am "not the Momma"... but am wondering how you guys do that. I will pass on your thoughts to Lisa. Who is also feeling pretty thankful and stressed tonight.

mary

 

[Robin+5]

I am not sure how many of you guys are Christians...but I have seen several of you guys ask for prayer...so here goes.

Richard (Lauren's Dad) is a brittle diabetic. (Lauren is the Wish Teen, for those that may not know.) He has had diabetes since he was 5, I think. Anyway...his blood sugar can drop really fast for no apparent reason. Tonight he checked his blood sugar before he went running and it was fine. He was running with his 9-year-old son, William (Lauren's little brother) and basically fell out from low blood sugar. He was passed out in the middle of the street. William had to flag down a car (they live in a rural area) and the police and ambulance were called. Richard is fine! Thank the Lord. (and believe me, we are thanking Him tonight!) But William already has stomach ulcers and other issues related to stress in his world...please pray for him. The people in the car that he flagged down said that he was a HERO for getting help for his dad. But he just feels the stress of everything (disabled sister, diabetic father, etc). Anyway, please pray for him.

On a similar note.. How do you guys handle siblings? This is Lauren's wish trip...and the very nice people at MAW have said to make sure the trip is about her... but what do you guys do for the siblings? How do you handle the "Lauren is getting all the attention" deal? How do you balance having a trip that celebrates Lauren and not have William feel left out, yet again? Any thoughts on that? I am "not the Momma"... but am wondering how you guys do that. I will pass on your thoughts to Lisa. Who is also feeling pretty thankful and stressed tonight.

mary

Mary,
I will pray for the whole family that they recieve some relief from the stress of it all
On the sibling note...my son was the wish child. He has 4 sisters, 2 older and 2 younger (poor kid). We let Nathan pick his wish and we did not offer any advise. He picked WDW and we all went in August. The whole family was treated like royality. He was made to feel special, but we all were. GKTW was awsome to all the kids. They all were included in everything. In the parks it was the whole family that got to the head of the line for rides and character greets. It is the whole family that goes through the stress of a child or sibling that is sick and I believe that GKTW knows that and does whatever they can to make your time special and to forget a little bit about the medical side of everything. I hope that helps
Robin

 

[alizesmom]

I'll say a prayer for William. Karen

 

[AmberGreenawalt]

Maroo, we'll be saying prayers here too!

I have a little update on Sebastian's cough...

Last week Dr. Queen (Sebastian's pediatrician) requested that I give her call on Monday if Sebastian's coughing had not stopped. Monday rolled around and he was still coughing so I phoned the office and left a message for the nurse. Nurse Linda called me back and told me that Dr. Queen had already scheduled Sebastian for a CT of his chest at Presbyterian Hospital in Matthews for 2:30 that afternoon.

Dr. Queen had mentioned last week that she was going to speak with Sebastian's Oncologists and find out what kind of scan they wanted to do. She said if they preferred an MRI that she was going to go ahead and schedule it because they typically take longer to process the orders. I was surprised she had already placed a CT order. Nurse Linda said that Dr. Queen wanted him to have the scan either Monday or Tuesday at the latest. I'm glad that she anticipated that his cough would probably stick around and went ahead and preemptivelymade the appointment for Monday. The reasoning was to have the results back well before his surgery next Monday.

Brian came home from work and took him over to the hospital for the test. Everything went fine. I called Randolph Pediatrics back that afternoon to ask if we should continue to give him the Augmentin antibiotic. Linda called back and said that they got the results of the CT already and that everything looked GREAT and to just continue the antibiotic and start Mucinex! Though we really did think Sebastian just has some sort of virus we're relieved to be SURE! We're all set to proceed with the port removal.

 

[GoofyDoo]

Amber, what a wonderful answered prayer!!!

 

[AmberGreenawalt]

I sent the following out to my family and friends. Please feel free to copy, personalize and send on to everyone you know. Let's help support this awesome organization that's helped us

Celebrate the 7th Annual World's Largest Ice Cream Social and Support the Make-A-Wish Foundation with Cold Stone Creamery

As many of you know the Make-A-Wish Foundation is making Sebastian’s Disney dream come true in December 2008! They have touched our lives by bring a big bright rainbow of hope to our little boy as they do for so many children with life threatening medical conditions.

Throughout the month of September, Cold Stone Creamery will be selling Make-A-Wish wall stars to benefit the Make-A-Wish Foundation. If you buy a Make-A-Wish star supporting the foundation you will receive a $1.00 off Coldstone Coupon to use anytime during the month of September.

To cap off this special month, Cold Stone is also hosting the 7th Annual World's Largest Ice Cream Social at participating Cold Stone Creamery locations nationwide. It will be a special night to join together and share the simple pleasures of life with a FREE ice cream and family fun.

On September 25th from 5:00 - 8:00PM, guests will be treated to a 3 oz. serving of “Jack or Emily's Creation”. All donations will benefit the Make-A-Wish Foundation

The very special “Make-A-Wish Creations” inspired by Jack and Emily, two Wish Children:
Jack's Creation is Marshmallow ice cream with OREO® Cookies Chocolate Chips and Fudge
Emily's Creation is Nutter Butter® ice cream with White Chocolate Chips, Kit Kat® and Yellow Cake

 

[mom2lilnick]

Glad it is good news Amber!

 

[chcmama]

My 11yo dd has cystic fibrosis and was recently approved for a wish trip. We haven't met with our wish granters yet so we are in the initial phases. My dd wants to go on a disney cruise and swim with dolphins. Has anyone on here done a wish cruise? I looked at the list of trip reports at the beginning, but none were cruises, this is a long thread and haven't had time to go through it. I'm just curious and would love any information I can find.
Thanks

 

[iu97alum]

My 11yo dd has cystic fibrosis and was recently approved for a wish trip. We haven't met with our wish granters yet so we are in the initial phases. My dd wants to go on a disney cruise and swim with dolphins. Has anyone on here done a wish cruise? I looked at the list of trip reports at the beginning, but none were cruises, this is a long thread and haven't had time to go through it. I'm just curious and would love any information I can find.
Thanks

Hi there! We're in the same boat as you as DD has been granted a wish as well and wished for the Disney Cruise (or disney boat, as she's fond of saying). We haven't started planning her wish yet as she still has at least two more procedures coming up (one next week!) so I am afraid I am not much help. Looking forward to more info too though!

 

[oklamomof4boys]

My 11yo dd has cystic fibrosis and was recently approved for a wish trip. We haven't met with our wish granters yet so we are in the initial phases. My dd wants to go on a disney cruise and swim with dolphins. Has anyone on here done a wish cruise? I looked at the list of trip reports at the beginning, but none were cruises, this is a long thread and haven't had time to go through it. I'm just curious and would love any information I can find.
Thanks

Some have done cruises-others haven't been able to. It all depends on the chapter, I think. My son wanted to do a Disney Cruise, but the only cruise they would approve was a 3 night cruise. That just seemed so short. So he decided to do WDW because it would be 6 nights.

I have read of others only getting to do a 4 night cruise, some of them getting a 7 night cruise and others not being approved for any kind of cruise. Hopefully you will have a chapter that has the money for cruises! Let us know!

Carol

 

[LuvGoing2Disney7]

Yesterday was a really busy day. We did love the BYU game, sorry for the Huskies but we do bleed BYU blue at our house. We are giving away our tickets to next week's BYU/UCLA home game because of our trip. Grandpa says that is the ultimate sacrifice a grandfather should have to make The Utah team beat UNLV so we were happy with that too!

Denise

LOL that is the ultimate sacrifice.

Hi everyone,
I am a pediatric nurse, and I refer nearly all of my patients to MAW or another wish granting group for those under 3. It is wonderful to be able to share the "insider" details, secrets, etc to my families. Many families have returned to say thanks for the info!!! I have even referred a few to come check out this site.

Again, thank you all.

That is so incredibly sweet of you. WELCOME

My son ian is going on his make a wish trip in november the little guy is so excited. I been trying to get chef misckey for him but we have not had any luck yet.

Call them daily. That's what we had to do to get one of the Reservations we wanted. It took 3 days, but we got it

We are at our 2 week mark! YEAH! Time for the true stress to hit me!!
Any traveling tips? It will be a 5 hour + flight with a 6 and a 4 year old so I am a little worried on how to keep them busy. We have only been on a 1 hour flight a while back and even that was tough.
Thanks

YAY!! I can't wait to hear about your trip. We should have lots of reports and pictures to see in the next week or so

So sorry about your wish granters Please let me know what works on the plane. I'm having the same issues and will be traveling 6+ hrs with a 6 and 4 yr old too. We do have the wonderful packages from Amber

I But William already has stomach ulcers and other issues related to stress in his world...please pray for him. The people in the car that he flagged down said that he was a HERO for getting help for his dad. But he just feels the stress of everything (disabled sister, diabetic father, etc). Anyway, please pray for him.
mary

Will do! I'm so glad his dad is ok. As for siblings I try to even things out. It may not be exactly the same, but something. When Drew's wish granters came I had my mom take the other kids for ice cream. When Drew got balloons, he gave one to each of the siblings that wanted one and then he kept the rest. He's really good at sharing (most of the time). We ordered bags from Disney Shopping so it was something for them all. They were so excited to all get one.

Dr. Queen had mentioned last week that she was going to speak with Sebastian's Oncologists and find out what kind of scan they wanted to do. She said if they preferred an MRI that she was going to go ahead and schedule it because they typically take longer to process the orders. I was surprised she had already placed a CT order. Nurse Linda said that Dr. Queen wanted him to have the scan either Monday or Tuesday at the latest. I'm glad that she anticipated that his cough would probably stick around and went ahead and preemptivelymade the appointment for Monday. The reasoning was to have the results back well before his surgery next Monday.

they got the results of the CT already and that everything looked GREAT and to just continue the antibiotic and start Mucinex! Though we really did think Sebastian just has some sort of virus we're relieved to be SURE! We're all set to proceed with the port removal.

I love that your DR had it all scheduled for you. WONDERFUL news that it's "just" a virus. I'll be thinking of you all this next week and hope his port removal goes well

 

[Lambflock]

Amber!!!! That is such wonderful news!!! I am sooooo happy for all of you!!!!!

I have a question for you, do you live in Charlotte NC? Some of the things you posted sound familar. We have family there and were just there over Labor Day weekend!! In fact we have talked about moving back, but want to find good dr's and the services we have here.

Also, check out my TR!!! I posted pictures of the awesome package you sent Hank and Mackenzie!!! They loved it!!!

 

[wendygrace]

Updated front page.

As many of you know, we are currently doing a week of specialists. Today we saw the cardiologist who never wants to see us again! This is great news! Doctor did Echo, EKG and 24 hour holter and there are no signs of Pulmonary Hypertension or V-Tachs!! We are sooooo happy. We also saw GI and he thinks that Michael is just small but is at least inching along the 3% line so he does not need to see us again either unless we are still concerned with his growth. He is doing the Colitis test to make sure that's not it but doubts that it is.

I am working at 1.0mbps here so I must go. Hope everyone is well.

 

[bigdisgrandma]

Updated front page.

As many of you know, we are currently doing a week of specialists. Today we saw the cardiologist who never wants to see us again! This is great news! Doctor did Echo, EKG and 24 hour holter and there are no signs of Pulmonary Hypertension of V-Tachs!! We are sooooo happy. We also saw GI and he thinks that Michael is just small but is at least inching along the 3% line so he does not need to see us again either unless we are still concerned with his growth. He is doing the Colitis test to make sure that's not it but doubts that it is.

I am working at 1.0mbps here so I must go. Hope everyone is well.

Wendy, thank you so much for your great gift to all the wish trippers. I am so happy for all the good news for your Michael! You deserve nothing less!

Denise

 

[LuvGoing2Disney7]

Updated front page.

As many of you know, we are currently doing a week of specialists. Today we saw the cardiologist who never wants to see us again! This is great news! Doctor did Echo, EKG and 24 hour holter and there are no signs of Pulmonary Hypertension or V-Tachs!! We are sooooo happy. We also saw GI and he thinks that Michael is just small but is at least inching along the 3% line so he does not need to see us again either unless we are still concerned with his growth. He is doing the Colitis test to make sure that's not it but doubts that it is. .

That is wonderful I hope the rest of your appts go so well

Denise

I can't believe you have ONE day Are you all packed and ready to go????

 

[LuvGoing2Disney7]

I just updated our PTR with pictures. Link is in my siggy

 

[alizesmom]

Wendygrace, so glad to hear of all the docs who never want to see Michael again. Feels real good, I bet.

We are thinking about a Disney Trip as Ciara's wish but despite having gone with Alize, I feel like a newbie. Ciara is more unstable trachwise than Alize, has more behavioral issues and is much more aware of and affected by her surroundings. I would love to hear from those of you whose child can react strongly and suddenly to her environment. Ciara melts down by punching herself in the face over and over then turning blue and requiring oxygen. I'm having difficulty imagining that scenario in front of the Castle. Have you ever heard of someone spending the entire week at GKTW?

Thanks. Karen