Wish Trippers...Unite!! Volume One

[jessica52877]

Maroo, that video was beautiful! I am going to have to go back and read how you did it. I know it was discussed. That is something to treasure forever!

 

[wendygrace]

I don't have time to watch the video but I'll come back to it.

Amber, what does the baby eat? This sounds like a food allergy, for Michael it was a milk allergy and he had all those symptoms. His allergy did not show up on the allergy tests but within one month of taking him off both milk and soy based formulas and going completely hypoallergenic, he was so much improved. We then did NAET treatments and they worked! Docs don't believe in NAET but they really really work. *hugs* to you and your family.

 

[maroo]

Maroo, that video was beautiful! I am going to have to go back and read how you did it. I know it was discussed. That is something to treasure forever!

Thank you, Jessica! I just used the Windows Movie Maker that came with my computer. I added the pictures and then changed all of the "durations" on the pictures using the timeline feature. I added the music and then tweaked it so that "rainbow" would come up at the right time, etc.

The hard part was getting the song on there...I downloaded from iTunes, but then I had to burn it to a CD and then add it to the "project"...it really was fairly easy.

I will be glad to answer any questions...

I don't have time to watch the video but I'll come back to it.

Amber, what does the baby eat? This sounds like a food allergy, for Michael it was a milk allergy and he had all those symptoms. His allergy did not show up on the allergy tests but within one month of taking him off both milk and soy based formulas and going completely hypoallergenic, he was so much improved. We then did NAET treatments and they worked! Docs don't believe in NAET but they really really work. *hugs* to you and your family.

Welcome back!!! What are NAET treatments? I have not thought of an allergy!! great idea!

 

[tinytreasures]

prayers for your baby Amber

 

[jessica52877]

Thank you, Jessica! I just used the Windows Movie Maker that came with my computer. I added the pictures and then changed all of the "durations" on the pictures using the timeline feature. I added the music and then tweaked it so that "rainbow" would come up at the right time, etc.

The hard part was getting the song on there...I downloaded from iTunes, but then I had to burn it to a CD and then add it to the "project"...it really was fairly easy.

I will be glad to answer any questions...

Thank you. I literally just took notes.

 

[Khalana]

Hi everyone,
I remember people talking about this but I can't find the posts right now. What is the cost of the Photopass? Do you pay only for the CD and prints? We've been talking about it after dh surprised me by saying that we need to make sure we have great pictures of our trip (he's usually pretty careful with money).

 

[maroo]

if you pre-pay for the CD is about $99.00 or something like that...

If you want till you get back to see the pics...then you are looking at $125.

If you choose to buy it...make sure that you get LOTS of the photopass pictures...tell them you have pre-paid and they will take lots of pics for you guys.

You can also find the photo people in photogenic spots at the parks and they will do poses for your family...like of you guys holding tinkerbell...and stuff like that...and then you can add tinkerbell when you get home and log on to see the pics...

Also...you can use as many photopass cards as you want (you get one each time your picture is taken unless you give them your card first)...so all adults in your party should have at least one card. And all adults should know what to do with the card. (This came back to haunt us on our trip!)

You can also take a picture of EACH card that you have with your own digital camera and then you can keep the numbers from your card all in one place. When you get home and realize you lost the card...you will still have the number and can get the pics.

anyway...those are from research on these boards AND from our mistakes we made on our trip!!!

 

[ndloewen]

Hi all, I've been lurking for months, and I did post once way back to get some info from the Canadians. But it is now time for a formal introduction as Noah has been granted a wish from the Children's Wish Foundation of Canada! Because he is nonverbal, we have informally made his wish for him (trip to Disneyworld) over the phone, and we are waiting for the papers to come in the mail so we can make it official and request dates. We are hoping to go sometime in January or February, if we can make things happen by then. For us, time is of the essence, and we need to do the trip soon while he is able to. We were actually turned down by the Rainbow society (the first foundation we approached) because he is nonverbal, and I was shocked and very disappointed that they would discriminate against a child like this. However, the Children's Wish Foundation has been nothing but wonderful to our family and Noah's situation.

A bit of background... Noah is our 3rd child (we have a daughter, Kailyn (8) and another son, Joshua (6)). Noah was born with a rare genetic condition (chromosome 12q deletion) as well as a metabolic disorder, San Fillippo Syndrome (a degenerative brain disease), leaving him developmentally delayed with multiple life-threatening health issues. He's been in and out of hospital since birth with many undiagnosed GI issues, pneumonias, central line infections, blood clots etc... we have almost lost him more times than we care to remember. He is our little peanut, weighing in at less than 15lbs at 3 years of age. I have a blog with his whole story for those interested in some light reading... noahgrantjohn.blogspot.com

When he turned 3 in September, the hospital staff began telling us we needed to apply for his wish. So we did...and here we are. He has been in hospital for the past 4 weeks again (we are hoping for discharge next week if all goes well). We seem to have a slight reprive in the level of care he requires, (this will likely change again soon), which is why we are hoping to do his wish trip soon while we can. Hoping to get dates in January or February if our foundation can make that happen.

I've been following all your stories and have shed many tears over your trip reports. Looking forward to getting to know you all!

Nichole

 

[llurgy]

Hi all, I've been lurking for months, and I did post once way back to get some info from the Canadians. But it is now time for a formal introduction as Noah has been granted a wish from the Children's Wish Foundation of Canada! Because he is nonverbal, we have informally made his wish for him (trip to Disneyworld) over the phone, and we are waiting for the papers to come in the mail so we can make it official and request dates. We are hoping to go sometime in January or February, if we can make things happen by then. For us, time is of the essence, and we need to do the trip soon while he is able to. We were actually turned down by the Rainbow society (the first foundation we approached) because he is nonverbal, and I was shocked and very disappointed that they would discriminate against a child like this. However, the Children's Wish Foundation has been nothing but wonderful to our family and Noah's situation.

A bit of background... Noah is our 3rd child (we have a daughter, Kailyn (8) and another son, Joshua (6)). Noah was born with a rare genetic condition (chromosome 12q deletion) as well as a metabolic disorder, San Fillippo Syndrome (a degenerative brain disease), leaving him developmentally delayed with multiple life-threatening health issues. He's been in and out of hospital since birth with many undiagnosed GI issues, pneumonias, central line infections, blood clots etc... we have almost lost him more times than we care to remember. He is our little peanut, weighing in at less than 15lbs at 3 years of age. I have a blog with his whole story for those interested in some light reading... noahgrantjohn.blogspot.com

When he turned 3 in September, the hospital staff began telling us we needed to apply for his wish. So we did...and here we are. He has been in hospital for the past 4 weeks again (we are hoping for discharge next week if all goes well). We seem to have a slight reprive in the level of care he requires, (this will likely change again soon), which is why we are hoping to do his wish trip soon while we can. Hoping to get dates in January or February if our foundation can make that happen.

I've been following all your stories and have shed many tears over your trip reports. Looking forward to getting to know you all!

Nichole

Welcome Nichole!

Happy that you have gotten a Wish trip. I cant believe that a wish foundation would deny a Wish just because of Verbal Issue!! So your kid can be as sick as anything but unless said kid can talk he/she wont get a wish?? Seems to be something very much amiss there.

We are going the 3rd week in January, maybe if you get it all sorted we will be there at the same time?

Fingers crossed that everything moves quickly to take advantage of the "not -so-bad" time in Noahs life

 

[Khalana]

Welcome Nichole!!!

I'm happy that you've found your way here! As soon as you reach 10 posts and have your dates you should start your own Pre Trip Report.

I can't believe that the Rainbow Society denied your Wish because he is non-verbal....? That doesn't make any sense. I'll have to ask Grace about that.

Join in the fun and let us get to know you and your family!

 

[mom2lilnick]

Welcome Nichole! I must say.. I love the name Noah! I am so glad you are hear and can't wait to hear about yours and Noah's journey!

 

[oklamomof4boys]

We literally walked in the house 90 minutes ago! I have so much reading to catch up on! I have so much I want to tell you all but once we walked in the door, Nathan threw up on the floor! He had been complaining off and on that he didn't feel well but I thought it was just a combination of motion sickness and being sad about his trip being over. But once he threw up, he felt better and fell asleep.

I am just bursting with information that I want to tell you all but I know once I start to update my trip report, I'll be up all night! But let me just say that the trip was completely magical! I got to meet Becca and Jonah today also ( along with Becca's husband, Kristian- I think that was his name).

I did read a little bit from this thread and Amber, I hope Savannah is better soon. Our pediatrician worried that William had CF his first winter ( he was 6-7 months old). We had the sweat test done and it was negative. They think he had RSV. Maybe it is an allergy. I will say a prayer for all of you!

Carol

 

[mom2lilnick]

Carol! Welcome home! I am sorry Nathan got sick, I hope that is a one time thing tho. I can't wait to read all about your trip.

 

[llurgy]

Welcome home Carol!!
I cant wait for you to start your trip report!!
I hope that Nathans episode was just a one off and that nothing comes of it
Mandy

We literally walked in the house 90 minutes ago! I have so much reading to catch up on! I have so much I want to tell you all but once we walked in the door, Nathan threw up on the floor! He had been complaining off and on that he didn't feel well but I thought it was just a combination of motion sickness and being sad about his trip being over. But once he threw up, he felt better and fell asleep.

I am just bursting with information that I want to tell you all but I know once I start to update my trip report, I'll be up all night! But let me just say that the trip was completely magical! I got to meet Becca and Jonah today also ( along with Becca's husband, Kristian- I think that was his name).

I did read a little bit from this thread and Amber, I hope Savannah is better soon. Our pediatrician worried that William had CF his first winter ( he was 6-7 months old). We had the sweat test done and it was negative. They think he had RSV. Maybe it is an allergy. I will say a prayer for all of you!

Carol

 

[llurgy]

Nichole,
I have been reading about your Peanuts journey, up to august 2007 at the moment.
I cannot believe how tiny Noah was at the age of one. When you took that photo of him next to a near new born it really brought it home to me how tiny he was, 1 year old and still only 7lb!!
I had to laugh when you were talking about the oxygen concentrator and how loud it was! We too had a long bout with O2 concentrator nights and when we didnt have to use it all of the time, no-one could get to sleep, for a few months and we were running it on and off just to get the white noise back!!!
We only have to run it periodically now, so now the noise is a disturbing noise again.

Mandy

Hi all, I've been lurking for months, and I did post once way back to get some info from the Canadians. But it is now time for a formal introduction as Noah has been granted a wish from the Children's Wish Foundation of Canada! Because he is nonverbal, we have informally made his wish for him (trip to Disneyworld) over the phone, and we are waiting for the papers to come in the mail so we can make it official and request dates. We are hoping to go sometime in January or February, if we can make things happen by then. For us, time is of the essence, and we need to do the trip soon while he is able to. We were actually turned down by the Rainbow society (the first foundation we approached) because he is nonverbal, and I was shocked and very disappointed that they would discriminate against a child like this. However, the Children's Wish Foundation has been nothing but wonderful to our family and Noah's situation.

A bit of background... Noah is our 3rd child (we have a daughter, Kailyn (8) and another son, Joshua (6)). Noah was born with a rare genetic condition (chromosome 12q deletion) as well as a metabolic disorder, San Fillippo Syndrome (a degenerative brain disease), leaving him developmentally delayed with multiple life-threatening health issues. He's been in and out of hospital since birth with many undiagnosed GI issues, pneumonias, central line infections, blood clots etc... we have almost lost him more times than we care to remember. He is our little peanut, weighing in at less than 15lbs at 3 years of age. I have a blog with his whole story for those interested in some light reading... noahgrantjohn.blogspot.com

When he turned 3 in September, the hospital staff began telling us we needed to apply for his wish. So we did...and here we are. He has been in hospital for the past 4 weeks again (we are hoping for discharge next week if all goes well). We seem to have a slight reprive in the level of care he requires, (this will likely change again soon), which is why we are hoping to do his wish trip soon while we can. Hoping to get dates in January or February if our foundation can make that happen.

I've been following all your stories and have shed many tears over your trip reports. Looking forward to getting to know you all!

Nichole

 

[munch704]

Hi all, I've been lurking for months, and I did post once way back to get some info from the Canadians. But it is now time for a formal introduction as Noah has been granted a wish from the Children's Wish Foundation of Canada! Because he is nonverbal, we have informally made his wish for him (trip to Disneyworld) over the phone, and we are waiting for the papers to come in the mail so we can make it official and request dates. We are hoping to go sometime in January or February, if we can make things happen by then. For us, time is of the essence, and we need to do the trip soon while he is able to. We were actually turned down by the Rainbow society (the first foundation we approached) because he is nonverbal, and I was shocked and very disappointed that they would discriminate against a child like this. However, the Children's Wish Foundation has been nothing but wonderful to our family and Noah's situation.

A bit of background... Noah is our 3rd child (we have a daughter, Kailyn (8) and another son, Joshua (6)). Noah was born with a rare genetic condition (chromosome 12q deletion) as well as a metabolic disorder, San Fillippo Syndrome (a degenerative brain disease), leaving him developmentally delayed with multiple life-threatening health issues. He's been in and out of hospital since birth with many undiagnosed GI issues, pneumonias, central line infections, blood clots etc... we have almost lost him more times than we care to remember. He is our little peanut, weighing in at less than 15lbs at 3 years of age. I have a blog with his whole story for those interested in some light reading... noahgrantjohn.blogspot.com

When he turned 3 in September, the hospital staff began telling us we needed to apply for his wish. So we did...and here we are. He has been in hospital for the past 4 weeks again (we are hoping for discharge next week if all goes well). We seem to have a slight reprive in the level of care he requires, (this will likely change again soon), which is why we are hoping to do his wish trip soon while we can. Hoping to get dates in January or February if our foundation can make that happen.

I've been following all your stories and have shed many tears over your trip reports. Looking forward to getting to know you all!

Nichole

Welcome Nicole

I'm glad you are getting a wish for Noah. Being turned down for being non verbal is horrible. I was afraid of the same thing with our wish for Morgan. We will be there beginning of Jan hoping everything goes smoothly for you.

 

[camarks1234]

welcome Nichole!

Carol, I can't wait to hear all about your trip and I hope Nathan's feeling better!

I'm sorry I haven't been around much this month. I run my own business and between that and doing all the hospital stuff it's been crazy. Hopefully I'm starting to get caught up and will be able to take more "coffee breaks"

Will have to go back a couple pages now and catch up!

 

[ndloewen]

Thanks for the warm welcome from everyone and thanks for checking out his blog.

Linda, it was Grace that I talked to at Rainbow Society because you recommended them. After a brief 5 minute conversation, I was given the line that Noah doesn't qualify because he is unable to verbalize his wish. Now I understand that the reason is that their organization wants to make sure that they truly grant the wish of the child. However, come meet with my child, and you will see that he communicates!! Just not in a verbal way! But anyone who knows him can see the things that he loves. I'm still upset about that and I think we may send a letter to their organization after Noah's wish trip!! I hate to think that other children are turned away as well.

I have read so many of your trip reports now and our family is getting SO excited! We are going to ask if we can extend the trip on our own dime so hopefully we can have some down days in between the park days. Can't wait to start my own pretrip report! Hopefully Noah gets discharged tomorrow so I can start my obsessive planning!!

Nichole

 

[Khalana]

Hi Nichole,

That's too bad about the Rainbow Society. I didn't know they had that kind of rule. But I do remember that they took Lydia into another room to see what her Wish was so she wasn't "influenced" by us.

I hope your experience with the other organization is good. And GKTW is the same for everyone. It'll be fun when you get your dates and the planning can start in earnest!

 

[AmberGreenawalt]

Savannah is in the hospital.

I updated our PTR with info and pictures:
http://www.disboards.com/showthread.php?p=28888198#post28888198

Please say some prayers for her to gain some weight so we can go home in time for Disney!