Make a Wish (and other organizations) - Wish Trippers UNITE! Volume THREE! :)

[4monkeys]

I'm a new poster at DIS boards but have lurked a lot over the years. I was working my way through this monster thread but was wondering if anyone could give me some insight?

This past year and a half has been really rough- DH lost his job, we lost our house, we had a 5 day NICU stay with my DD and then DS got diagnosed with cancer. He just finished his last chemo earlier this week and we decided to go ahead and start working on his wish. Just for background purposes we live in CA and our DS is on Medi-Cal(CA's Medicaid) and he qualified for CCS which is supplemental insurance for certain conditions when your medical bills are more than a % of your income. We wanted to do WDW since we live in SoCAL and have been to DL many times but she said since we are on Medi-Cal that isn't an option with MAW since they had problems in the past with Medi-Cal not covering in FL if an emergency arises. We were so disappointed but decided to go to DL instead.

She said the DL trip consisted of 3 days to Disney/ 2 nights in a DL resort hotel with a limo ride or transportation reimbursement and $50 a day for food. While we are so happy to have the opportunity for a wish trip, this doesn't seem to be in line with the stories I'm reading. Has anyone had any experience or possibly have some words of advice? We really wanted to go to WDW but maybe that's not possible?

ETA: We haven't actually spoke to anyone from MAW yet, this is coming from our social worker.

I am glad you found this board. I can't answer much of your questions as we are new to this ourselves. BUT I can tell you that you will get A LOT of GREAT information from here!! Best wishes for you and your family!

Hi
I am the mom of two amazing girls. Katie is the wish child, she has been a fiesty little thing since the moment she was born 8 yrs ago on Dec 9. Katie is being granted a wish due to her leg length discrepany that is a result of surgery when she was 21 days old.

I will give you a bit of background on our little miracle girl. She was born weighing 380 grams (approx 1 lb 1 oz) and 12 weeks premature. She was the result of a very uneventful 1st pregnancy with no complications she was measuring small for gestational age but healthy.

After several days in NICU, she was progressing until her PDA closed and all hell broke lose. On top of being severe IUGR, once this bypass to her heart closed she no longer had blood circulating to her lower body due to a coarcation of the aorta(narrowing which in Katie cases was less a piece of spagetti wide) as well as several holes in her heart.

None of these heart defects are complicated when you are a 5 lb baby but at a 1lb no one really had much hope for survival and we were told to say good bye to our daughter. The medical intervention they were using to keep her alive could not continue long term and no one had really done this type of surgery on an infant of this size. Fortunately someone was watching over Katie and a old friend from college offered to make a few calls, she knew a cardiologist at Yale and within few days a very unstable Kathryn was moved to Childrens Hospital in Boston for some experimental treatments to fix her heart. Getting through the first
catherization was only a 10% chance of survival, but she made it.

The second cath which was performed 15 days after the first was much more complicated due to the fact that they could not go through her ambilical cord again since it dried up and fell off, so they had to use instruments made for bigger infants to try to open her aorta more to help with blood flow. It was during this procedure that Katie's femoral artery on her right leg was damaged and lack of blood flow caused her growth plates in her knee to die so it does not grow. After this her odds increased to 25% survival. After 3 caths and 2 open heart surgeries all at less than 4 lbs. Katie is a happy healthy almost 8 yr old

We are awaiting an above the knee amputation. But we an experimental afo kate continues to amaze us with her determination and optimism.

www.youtube.com/watch?v=OSRT2LEeFwA

So glad Katie is getting her wish!! My brother has an AKA. He was in an accident, he had tears in his aorta and they too went through the groin for his open-heart surgery. He threw clots in that leg. He ended up with 3 or 4 amputations before they were done. (they tried other things first... but nothing was helping) Good luck to Katie.. They have WONDERFUL prosthetics now. As determined as she sounds NOTHING will hold her back!!!

 

[4monkeys]

Yesterday started off yucky with 3 hours spent at DH's dr appointment. But we came home to 2 boxes and 2 packages in the mailbox!! I have posted pictures on Alli's PTR thread. WONDERFUL ladies here on Disboards!!!!

We also got a phone call last night from Alli's MAW volunteer that came to grant her wish back in August. They are coming Tuesday night for Allison's SEND OFF PARTY!! WOO HOO... they asked what Alli wanted to eat.. and she said "Red Robin~~~~ YUM" Can't wait to have the MAW pack in hand with tickets for the airplane. We also found out that the limo will be here to pick us up at 0630. Early, but so exciting!! Alli is so HAPPY!!

She woke up not feeling well today, but hoping that she will be much better by next week!!

Must get off here now. It took forever for me to do the pictures on photobucket!! awaits! Hope everyone has a GREAT day!!!

 

[fulseasmama]

I can't believe how much information I have found on this site in just one night.

It is amazing how much info you have all put together.


Katie's trip is not until the first week of February, but since I work retail from now until Christmas is pretty much just work work work, this site will make it so much easier

Just thought I would say hi. We will be there the first week in February also so maybe we will run into each other. Katie sounds like a great girl who is really a miracle. Yeah for her getting her wish. I look forward to hearing more as you plan your trip and hang in there as you work this holiday season. I used to work retail too and the holidays are a pretty rough time of year. Take Care!

 

[Haybuggsmom]

Hey Everyone!!!
I wanted to check in as I have just been lurking lately.
Neal has been home for a little over a week and he leaves again next Friday for Kauait. We are enjoying having him here.
Wanted to share a pic of him and the kids.

YES Jonathan has a mohawk. He hasn't put it up since dad has been home. I think he's afraid he may have a heart attack.

Tonight we are going to Busch Gardens/Christmas Town using Haylee's pasport. We are sad that Jonathan can't go because he works all weekend but I should have some great pics to post tomorrow. It's fun to still have a chance to take advantage of Haylee's wish trip for the next year!!!

 

[my2girlsrock]

Hi everyone our family will be going on our DD Taylor's MAW/GKTW trip Mar 13, 2011 - Mar 19, 2011 . You can read our whole story over on our PTR ~ I have been reading this thread since yesterday & I am amazed at all the things that everyone is willing to help with!!!!

I look forward to following along with everyone's journeys.....

 

[Budraw]

Wow!! Small world. We are actually live in Quartz Hill. Two seconds from Lancaster...lol

Wow! I am form Lancaster too
Love this sity!!

 

[Mom2mitokids]

Wow! I am form Lancaster too
Love this sity!!

Hi there..Is your family going on a wish trip?

 

[Mom2mitokids]

Hey Everyone!!!
I wanted to check in as I have just been lurking lately.
Neal has been home for a little over a week and he leaves again next Friday for Kauait. We are enjoying having him here.
Wanted to share a pic of him and the kids.

YES Jonathan has a mohawk. He hasn't put it up since dad has been home. I think he's afraid he may have a heart attack.

Tonight we are going to Busch Gardens/Christmas Town using Haylee's pasport. We are sad that Jonathan can't go because he works all weekend but I should have some great pics to post tomorrow. It's fun to still have a chance to take advantage of Haylee's wish trip for the next year!!!

I love this picture. So glad you are all enjoying your husband being home..even though it's for a short time. ((HUGS)) Have fun at Busch Gardens.

 

[Mom2mitokids]

Ok...I know some of you just got back from your trips. I'm in need to read some trip reports

 

[kailatilear]

Ok...I know some of you just got back from your trips. I'm in need to read some trip reports

Me too, I just love reading them.

 

[Happy Dreams1]

I wrote this for Lysi when we returned from our Wish Trip. It is 100% true and pretty well tells the story.

A MAGIC KINGDOM


I don't know if you'll believe
I met a Princess today
And was greeted in her castle
In a most royal way


Yes I met a real Princess
Who stooped to welcome me
And inside her royal castle
I met another three


There were towers that had banners
Stained glass windows in the wall
And the sparkling lights of magic
In the royal banquet hall


A fairy flew from somewhere
And she waved her magic wand
Then she blessed me with a smile
That became our special bond


My greatest wish was granted
And a star thats only mine
In that land of deep enchantment
Where the brightest wonders shine


I became a royal princess
At that magic coronation
And was gifted with enchantment
In a regal celebration


For a princess is a princess
When she is one in her heart
When becoming a true princess
Inner beauty's where you start


I can take you to my castle
In a land of mystery
If you have the childlike virtue
Of believing what you see


If you know that there is wonder
And perceive the majesty
Of a child's imagination
It will set your spirit free


Whisk away then to that place
Where, as a child, I flew
There all your dreams are living
And wishes all come true

:O I cannnot believe you wrote this. Awesome job! Very deep!

 

[katieswish]

How do you travel with pedisure? Katie still needs several cans a day because she continues not to gain weight even though we have gotten over the whole swallowing issue. Can it be packed in a suitcase or are we better off just taking a case as it is shipped to us. thanks in advance

 

[4monkeys]

How do you travel with pedisure? Katie still needs several cans a day because she continues not to gain weight even though we have gotten over the whole swallowing issue. Can it be packed in a suitcase or are we better off just taking a case as it is shipped to us. thanks in advance

We have to have Allison on it too. Her weight is fluctuating too much... We plan to put it in our carry on.

 

[maroo]

Pediasure...

You can put it in your carry on...but be ready to take it out to declare it to the TSA when you go through the scanners.

 

[maroo]

I can't believe how much information I have found on this site in just one night.

It is amazing how much info you have all put together.


Katie's trip is not until the first week of February, but since I work retail from now until Christmas is pretty much just work work work, this site will make it so much easier

I love the DIS!!

!! If I have not welcomed you already.

I am so glad you are getting good things from the site and hopefully this thread, too.

I love this board. Even though this is our second wish trip to DW, I found so many things I didn't know.

I learn something new on here almost every day!

Hey Everyone!!!
I wanted to check in as I have just been lurking lately.
Neal has been home for a little over a week and he leaves again next Friday for Kauait. We are enjoying having him here.
Wanted to share a pic of him and the kids.

YES Jonathan has a mohawk. He hasn't put it up since dad has been home. I think he's afraid he may have a heart attack.

Tonight we are going to Busch Gardens/Christmas Town using Haylee's pasport. We are sad that Jonathan can't go because he works all weekend but I should have some great pics to post tomorrow. It's fun to still have a chance to take advantage of Haylee's wish trip for the next year!!!

Beautiful pic!!! You guys look so happy.

Tell your husband thank you so much for his service.

 

[maroo]

I wrote this for Lysi when we returned from our Wish Trip. It is 100% true and pretty well tells the story.

A MAGIC KINGDOM


I don't know if you'll believe
I met a Princess today
And was greeted in her castle
In a most royal way


Yes I met a real Princess
Who stooped to welcome me
And inside her royal castle
I met another three


There were towers that had banners
Stained glass windows in the wall
And the sparkling lights of magic
In the royal banquet hall


A fairy flew from somewhere
And she waved her magic wand
Then she blessed me with a smile
That became our special bond


My greatest wish was granted
And a star thats only mine
In that land of deep enchantment
Where the brightest wonders shine


I became a royal princess
At that magic coronation
And was gifted with enchantment
In a regal celebration


For a princess is a princess
When she is one in her heart
When becoming a true princess
Inner beauty's where you start


I can take you to my castle
In a land of mystery
If you have the childlike virtue
Of believing what you see


If you know that there is wonder
And perceive the majesty
Of a child's imagination
It will set your spirit free


Whisk away then to that place
Where, as a child, I flew
There all your dreams are living
And wishes all come true

Love this!!!!!

 

[kailatilear]

Just got back from riding around looking at Christmas lights with the kids. 3 hours in the car and now Abby is in bed with her back massager with heat that my mom bought her today and ibuprophen in her system. It was fun and it actually started snowing while we were looking around, very pretty and unusual for Richmond, VA. Now watching Invasion of the Christmas Lights 2 on TLC, and the family they are showin now, does it and all donations go to MAW

 

[katieswish]

We need to take a least 21 cans plus her ducal...all that can go on a carry on?? And how much of a hassle will it be since Kathryns comes in metal cans.

Thank you for all the welcomes. Once Katie's birthday and Christmas are done I will have more time to plan our trip, but this site has made it easier.

I am concerned about how much time Katie will be able to tolerate since she just got a new experimental AFO and she is having a hard time adjusting to it. But it buys us more time before her amputation which will cut down on the number of time they have to lengthen the remaining part of her own leg.

She had a visit to the cardiologist and her heart is still perfect. And even better news she has no restrictions for Disney.

Next week we go for a ear mold for a new hearing aid. Kate has decided she would like to try one again. When she was 2 yrs old she tried one but it just confused her b/c left ear hears perfect and it was hard for her to tell us the feedback was bothering her at that age. we got confirmation she is eligible for a new aid and on her birthday she will be fitted for one. it has been a productive week here. Now if we could just gain some weight and height

 

[billwendy]

We need to take a least 21 cans plus her ducal...all that can go on a carry on?? And how much of a hassle will it be since Kathryns comes in metal cans.

Thank you for all the welcomes. Once Katie's birthday and Christmas are done I will have more time to plan our trip, but this site has made it easier.

I am concerned about how much time Katie will be able to tolerate since she just got a new experimental AFO and she is having a hard time adjusting to it. But it buys us more time before her amputation which will cut down on the number of time they have to lengthen the remaining part of her own leg.

She had a visit to the cardiologist and her heart is still perfect. And even better news she has no restrictions for Disney.

Next week we go for a ear mold for a new hearing aid. Kate has decided she would like to try one again. When she was 2 yrs old she tried one but it just confused her b/c left ear hears perfect and it was hard for her to tell us the feedback was bothering her at that age. we got confirmation she is eligible for a new aid and on her birthday she will be fitted for one. it has been a productive week here. Now if we could just gain some weight and height

Hmm - do you think you could just ship it down there ahead of time? They will hold it for you. Or is there a supplier down there that you could get it at when you get there?

Yay for the new hearing aid!!!

 

[Mom2mitokids]

We need to take a least 21 cans plus her ducal...all that can go on a carry on?? And how much of a hassle will it be since Kathryns comes in metal cans.

Thank you for all the welcomes. Once Katie's birthday and Christmas are done I will have more time to plan our trip, but this site has made it easier.

I am concerned about how much time Katie will be able to tolerate since she just got a new experimental AFO and she is having a hard time adjusting to it. But it buys us more time before her amputation which will cut down on the number of time they have to lengthen the remaining part of her own leg.

She had a visit to the cardiologist and her heart is still perfect. And even better news she has no restrictions for Disney.

Next week we go for a ear mold for a new hearing aid. Kate has decided she would like to try one again. When she was 2 yrs old she tried one but it just confused her b/c left ear hears perfect and it was hard for her to tell us the feedback was bothering her at that age. we got confirmation she is eligible for a new aid and on her birthday she will be fitted for one. it has been a productive week here. Now if we could just gain some weight and height

Do you have a hhc? I'm going to see if ours would just ship Kylees formula, feeding bags, Pedialyte directly to GKTW. If not...I believe all airlines doesn't charge you for medical supplies as carry-ons.