Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FIVE!!

[Rx774]

Forgive my ignorance. I introduced ourselves to the Welcome Board, but not to you guys officially...

Ok where do we start… our Make A Wish Trip(s) are… unique.

Allow me to explain. We are the proud parents of not only 1, but 2 children eligible for Make A Wish. Both our daughter Annika (age 10) and son Christian ( age 6) were born with MSUD (Maple Syrup Urine Disease), a rare metabolic disorder that prevents the body from breaking down protein properly. I know, we never heard of this condition before either. Annika was diagnosed at day 5 because of the newborn screen. Her pediatrician called us and asked us strange questions. “How is Annika doing?” “Do you smell Maple Syrup around her diaper?” By this time, her room REAKED of it, but as new parents, we thought it was a byproduct smell of the diaper. We were told to rush her to Children’s Hospital of Philadelphia, where she spent the following 2 weeks in the NICU. Her brain had swollen, due to the amino acids her body not be able to metabolize, becoming toxic in her brain. She was coma like for days, but every day, she got better and better as those harmful levels dropped. If it was as simple as having a low protein diet, this disease wouldn’t be that bad, but other stimuli could set this condition off. Colds, stress, even something as simple as not eating enough prior to bed, could disrupt her. The initial stages were slowed speech, and the inability of your child to hold themselves up right. Think V8 commercials.

Our son Christian went through a similar phase. Diagnosis, treatment… and release. Both kids would have their bouts in the hospital, which would usually last a few days at a time. One day, we had them in the hospital, at the same time. Down the hall from one another. We learned about the transplant option when Annika was about 6, but we decided that endeavor was just too much. Then 1 day Christian, had a really bad episode while in the hospital, and have seizure really badly. My husband, who was spending the night with him told me that the doctors were running in at out frantically, and Christian had his eyes wide open… but nobody was home. He was in a coma, and we knew what the next phase was. Luckily he recovered fully. And that was the last straw for us. We decided, why have this over our their heads forever. We elected to get a transplant for both kids. It was discovered that Annika had a hole in her heart when they examined her body for transplant ready. So she had to have it surgically prepared. Our poor child was going through so much. Eventually they were both able to receive liver transplants, which didn’t cure them on a genetic level, but alleviated all the negative aspects of MSUD.

So here we are, years later, just finding out about MAW. My husband has referred them, and the MAW team has answered our call. MAW called yesterday to schedule an appointment to see us soon. Our son wants to go to Universal Studios in California. We are hoping they include a pass to Disney while out there. Our daughter wants to do a Disney Cruise. We wouldn’t’ push for both in 1 year, I’m a SAHM, but my husband has already used some vaca time for when we visited his mom in Florida. Thanks My name is Shana. My husband's name is Robert btw. for taking the time to read all of this.

[jon03015]

Originally Posted by yeti5353

answering my own question, I see posting a reply puts up a new post.

We are from minnesota and my ten year old daughter with progressive kidney disease is waiting for her wish granters to come and hear her wish to go to WDW and other florida fun spots

Deb

A fellow kidney mom! I don't meet others very ofter. Welcome tot he board! How exciting that you are going to go to Florida! My son is 4 (will be 5) and we are going in January! We are super excited. Again, WELCOME!!!

[Amerch]

Ok so i m working on where we want to eat in the park. There is 6 of us but the kids dont eat much and we will do the other meals at GKTW, has ave one done the snack and Quick service ? Is that a good way to stretch your money ?

[icecreamforbreakfast]

Originally Posted by Amerch

Ok so i m working on where we want to eat in the park. There is 6 of us but the kids dont eat much and we will do the other meals at GKTW, has ave one done the snack and Quick service ? Is that a good way to stretch your money ?

Hi, we were also a family of 6 on our wish trip & couldn't bring ourselves to pay the prices in the park for food. We had a stroller along & brought a small cooler and brought in snacks & drinks. We went to the Wal-Mart down the road from GKTW to stock-up. We also ordered pizza at GKTW several evenings and took the left-overs to the park. By eating breakfast at the village & dinner there as well (most days) we snacked through lunch - which by the way maximized our time in the park as our wish kid didn't have much energy & didn't last too long, and saved money. We bought ice cream once and it cost $25 for us all to have a small treat. That was all the money we spent on food in the park the whole trip! But, after saying all that, I think different people have different thoughts on the matter. We are a family that very rarely eats out & it pains us to spend huge dollars on a meal out when we could choose to use the money differently.

[Amerch]

Originally Posted by icecreamforbreakfast

Hi, we were also a family of 6 on our wish trip & couldn't bring ourselves to pay the prices in the park for food. We had a stroller along & brought a small cooler and brought in snacks & drinks. We went to the Wal-Mart down the road from GKTW to stock-up. We also ordered pizza at GKTW several evenings and took the left-overs to the park. By eating breakfast at the village & dinner there as well (most days) we snacked through lunch - which by the way maximized our time in the park as our wish kid didn't have much energy & didn't last too long, and saved money. We bought ice cream once and it cost $25 for us all to have a small treat. That was all the money we spent on food in the park the whole trip! But, after saying all that, I think different people have different thoughts on the matter. We are a family that very rarely eats out & it pains us to spend huge dollars on a meal out when we could choose to use the money differently.

Thank you for the in site . We live on a tight budget so i look for ways to save every day . Since i do not know the size of are expenses check i would rather under plan than over plan . How far down is the walmart?
Is it a super center ? How old was every one ?

[Moodyzblu]

Originally Posted by Amerch

Ok so i m working on where we want to eat in the park. There is 6 of us but the kids dont eat much and we will do the other meals at GKTW, has ave one done the snack and Quick service ? Is that a good way to stretch your money ?

We only did quick service meals on our trip. Like your kids .. mine are not big eaters and neither are my older son and I, so QS worked out great for us. We ate breakfast at GKTW and had dinner there like 3-4 nights. The Walmart is right at the beginning of the street that GKTW is on ! It's a super center and they also have a huge Disney section. I shopped in there for a few things to buy to bring back home because it's much cheaper there than IN the parks.

[Amerch]

Originally Posted by Moodyzblu

We only did quick service meals on our trip. Like your kids .. mine are not big eaters and neither are my older son and I, so QS worked out great for us. We ate breakfast at GKTW and had dinner there like 3-4 nights. The Walmart is right at the beginning of the street that GKTW is on ! It's a super center and they also have a huge Disney section. I shopped in there for a few things to buy to bring back home because it's much cheaper there than IN the parks.

Thank you very much we have walmart now on are day one list fly in go to give kids the world do what ever we need to there walmart back to give kids the world and rest for a very long day 2

[Lilfoot93]

So Trevor has it narroewd down to a few things he would like... Maybe by the time the wish grantors come he will have chosen what he really wants!

Right now his list includes Star Wars weekend, Jedi training, meeting the Star Wars characters, Legoland, Sea World, Magic Kingdome, going on an animal safari, and 2 Lego sets...

When we first told him he did not quite get it and he wanted it to be sunny all the time and for his sisters to get a wish... How times have changed now that he has really thought about it! We will meet with the wish grantors once school is out.

Do the wish grantors usually get the wish kiddos to state their exact wish on the first meeting? We have told Trev that he will need to narrow it down to a couple things he really wants! I knew it would involve Star Wars and/or Legos!

My FIL has had more testing but we have not heard anything back yet. I am taking that as a good sign! He has larynx/vocal chord cancer and should start treatment soon. Thanks to everyone who has been lifting him up in prayer.

Jackie

[lorasmom]

Originally Posted by Lilfoot93

So Trevor has it narroewd down to a few things he would like... Maybe by the time the wish grantors come he will have chosen what he really wants!

Right now his list includes Star Wars weekend, Jedi training, meeting the Star Wars characters, Legoland, Sea World, Magic Kingdome, going on an animal safari, and 2 Lego sets...

When we first told him he did not quite get it and he wanted it to be sunny all the time and for his sisters to get a wish... How times have changed now that he has really thought about it! We will meet with the wish grantors once school is out.

Do the wish grantors usually get the wish kiddos to state their exact wish on the first meeting? We have told Trev that he will need to narrow it down to a couple things he really wants! I knew it would involve Star Wars and/or Legos!

My FIL has had more testing but we have not heard anything back yet. I am taking that as a good sign! He has larynx/vocal chord cancer and should start treatment soon. Thanks to everyone who has been lifting him up in prayer.

Jackie

Our wish granters asked a TON of questions - everything from favorite color, favorite food, favorite characters. They asked if you could be/meet/do/go anywhere/anything. And eventually narrowed it down to three wishes.

Don't worry, they'll find what he truly wants - that's what they do



Updates posted to my PTR - link below

[Mama2Josh]

Does anyone know how long it usually takes for MAW to get back to you about which wish will be granted and possible dates?
Josh's team met with him a few weeks ago, but we haven't heard anything since. We're waiting to find out if he gets to go to WWHP and WDW, and if his soon-to-be step-sister (Lexi) will get to go with us. It would be nice to be able to talk to Lexi about it - right now it's very hush hush since we don't know yet if MAW will allow her to go.

[Teamtori]

They got back to us really quickly, but we were trying to go in July so that meant they had to hurry a little. For us, they would NOT pay for Tori's stepbrother. The paperwork we got said that they only paid for "children living FULL TIME in the home." Since we split custody, he was not included,even though he is there half time with us, halftime with his mom.

On the plus side, he can stay at GKTW with us etc, but we have to pay for Park tickets, souveniers (they make a big deal about this..like not to pay for him with our expense check ) and his flight to Orlando.

[jon03015]

We have never been to Disney World, and the more I read the more I realize that I want to know more about the parks so I can figure out what rides we really want to do, and even what we want to pass up. And from everyone's TR you can't do it all! Does anyone have suggestions of books or blogs??? We are going in January! Only 8 more months!!!! LOL. Feels sooooo far away!!!

[Moodyzblu]

Originally Posted by Mama2Josh

Does anyone know how long it usually takes for MAW to get back to you about which wish will be granted and possible dates?
Josh's team met with him a few weeks ago, but we haven't heard anything since. We're waiting to find out if he gets to go to WWHP and WDW, and if his soon-to-be step-sister (Lexi) will get to go with us. It would be nice to be able to talk to Lexi about it - right now it's very hush hush since we don't know yet if MAW will allow her to go.

I know each chapter is different. We heard back right away. Also, if you stay at GKTW then you'll get to do BOTH WWoHP and Disney !!

[LittleEsmom]

The phone call we have been waiting on came yesterday
We will have a meeting with MAW this Sat. in Huntsville, AL. Do you think it will be a problem to wait for a time closer to Emma's b-day in March to go on her wish trip? That is also spring break for next school year. I just want to try to not miss a whole lot of school. Everyone's input would be VERY helpful so thanks in advance.

[Amerch]

Originally Posted by LittleEsmom

The phone call we have been waiting on came yesterday
We will have a meeting with MAW this Sat. in Huntsville, AL. Do you think it will be a problem to wait for a time closer to Emma's b-day in March to go on her wish trip? That is also spring break for next school year. I just want to try to not miss a whole lot of school. Everyone's input would be VERY helpful so thanks in advance.

They have you pick 3 dates that you want and they see what one they can make work