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

[Corrine 1973]

Well, it's time for me to de-lurk and introduce myself and my daughter Melia--especially since her trip has snuck up on us and is now only 2 months away.

When the Make A Wish volunteers came (about six months ago), Melia wished to go to Disneyworld...kind of. They actually asked her what she wanted, and she said she wanted to see Pooh. So they tried to prompt her a little and asked where Pooh lives. She looked at them and said, "At Owl's house." So they tried again and asked where Owl's house is. She looked at them like they were dumb and said, "In a tree." Basically, it was like herding cats (she was only 2 1/2), but it was finally decided and the trip was planned for October since we had a new baby coming in April and we wanted her to be a bit older before dragging her across the country. Oh, they also asked her what her favorite color was...she said black. Only my daughter.

Melia was born with a very rare metabolic disorder called Ornithine Transcarbamylase Deficiency. It's a mouthful. And it's an awful disease. Basically, her liver was missing a key enzyme needed to break down protein. Without it the byproducts turn into ammonia, which floods the body and brain and causes lethargy, stupor, seizures, brain damage, and finally coma and death. We were extremely fortunate that we were still in the hospital after her birth when things started downhill. On her third day she was flight-for-lifed to the Children's Hospital where we were very fortunate to have skilled metabolic doctors who started the appropriate treatments quickly. We were able to bring her home after about three weeks. She had special formulas and medications that they hoped would be enough to control it. For some kids (with milder forms of the disease) it can be enough, but it wasn't for Melia. We started out with blood draws every other day to check her ammonia levels, feedings using gram scales and on exact schedules, charts of everything, weight checks, alarms, liver biopsy and endless doctor's appointments, finally getting a mediport, keeping her away from illness, and essentially staring and staring at her, in the hopes that we would see the signs of an episode before it was too late--but it wasn't enough. Her body couldn't do it and she ended up hospitalized several times in her first few months.

That's when we had to come to terms that she would need a liver transplant. We ended up moving temporarily out to the Ronald McDonald House in California while she waited on the list. After three months she received a new liver, and after five months there we were able to come home. Obviously, the story goes on...but this is probably a long enough introduction.

It has been great to read through the boards, get so much info, and follow so many touching stories. Hugs to all of you and your little ones.

Welcome to the disboards!!! Everyone is great here. I can't even imagine going through with a Wish trip with out this board.

I can't wait to get know more about you and your family. I hope you start a PTR. I must admite that I am adicted to them.

Welcome to the club you never wanted to join!

I love this Quote. It's simple and soo true.

 

[tastycollector]

Welcome to the newcomers! Can't wait to read more about your precious ones!

 

[MomTo4+more]

Well, it's time for me to de-lurk and introduce myself and my daughter Melia--especially since her trip has snuck up on us and is now only 2 months away.

When the Make A Wish volunteers came (about six months ago), Melia wished to go to Disneyworld...kind of. They actually asked her what she wanted, and she said she wanted to see Pooh. So they tried to prompt her a little and asked where Pooh lives. She looked at them and said, "At Owl's house." So they tried again and asked where Owl's house is. She looked at them like they were dumb and said, "In a tree." Basically, it was like herding cats (she was only 2 1/2), but it was finally decided and the trip was planned for October since we had a new baby coming in April and we wanted her to be a bit older before dragging her across the country. Oh, they also asked her what her favorite color was...she said black. Only my daughter.

Melia was born with a very rare metabolic disorder called Ornithine Transcarbamylase Deficiency. It's a mouthful. And it's an awful disease. Basically, her liver was missing a key enzyme needed to break down protein. Without it the byproducts turn into ammonia, which floods the body and brain and causes lethargy, stupor, seizures, brain damage, and finally coma and death. We were extremely fortunate that we were still in the hospital after her birth when things started downhill. On her third day she was flight-for-lifed to the Children's Hospital where we were very fortunate to have skilled metabolic doctors who started the appropriate treatments quickly. We were able to bring her home after about three weeks. She had special formulas and medications that they hoped would be enough to control it. For some kids (with milder forms of the disease) it can be enough, but it wasn't for Melia. We started out with blood draws every other day to check her ammonia levels, feedings using gram scales and on exact schedules, charts of everything, weight checks, alarms, liver biopsy and endless doctor's appointments, finally getting a mediport, keeping her away from illness, and essentially staring and staring at her, in the hopes that we would see the signs of an episode before it was too late--but it wasn't enough. Her body couldn't do it and she ended up hospitalized several times in her first few months.

That's when we had to come to terms that she would need a liver transplant. We ended up moving temporarily out to the Ronald McDonald House in California while she waited on the list. After three months she received a new liver, and after five months there we were able to come home. Obviously, the story goes on...but this is probably a long enough introduction.

It has been great to read through the boards, get so much info, and follow so many touching stories. Hugs to all of you and your little ones.

Welcome! Don't be afraid to share to much or have long stories. That helps us know you better! I'm looking forward to hearing more as you prepare for your trip!

Welcome to the newcomers! Can't wait to read more about your precious ones!

There is another new wish family on the boards. For some reason, I couldn't figure out how to link their PTR to this thread. I think it's too hot here for my brain to function! (Heat index of 105 and no air conditioning.) Anyway the child's name is Jayden and they have a PTR started!

 

[Corrine 1973]

Found it!!!

Here's Jayden's Pretrip report.
http://www.disboards.com/showthread.php?t=2252126

 

[Matt1026]

Welcome CrystalSnow!!! This is a wonderful place filled with wonderful people to help ou out. I could not have planned our trip as well without this wonderful people.

 

[MomTo4+more]

Found it!!!

Here's Jayden's Pretrip report.
http://www.disboards.com/showthread.php?t=2252126

Thanks Corrinne! I have been spending the day locked with all 4 kids in the one room with a window air conditioning unit. It's crazy hot and humid today!

 

[VroomVroomLightning]

Thanks Corrinne! I have been spending the day locked with all 4 kids in the one room with a window air conditioning unit. It's crazy hot and humid today!

I hope you and the kids are doing ok. I am in Michigan right now and it is very humid here too from the storms. Yuck!

 

[Corrine 1973]

Thanks Corrinne! I have been spending the day locked with all 4 kids in the one room with a window air conditioning unit. It's crazy hot and humid today!

I know what you mean. We actually went to the mall to escape the heat and humidity and we have airconditioning.

 

[StefaniLyn]

Welcome to the club you never wanted to join!

I vote this for the Wish Trippers Thread Official Motto. I nearly spit out my milk when I read it. It perfectly describes "US!"

Welcome CrystalSnow. This thread has been incredibly helpful to me in planning our Wish Trip as well! I enjoyed reading Melia's story and look forward to hearing more.

 

[Matt1026]

I vote this for the Wish Trippers Thread Official Motto. I nearly spit out my milk when I read it. It perfectly describes "US!"

Welcome CrystalSnow. This thread has been incredibly helpful to me in planning our Wish Trip as well! I enjoyed reading Melia's story and look forward to hearing more.

I have to agree with the Motto. As you said it perfectly describes us.

 

[Terry718]

Welcome to the club you never wanted to join!

That kinda says it all!

Warm Welcome to the Newcomers!

 

[Eeyores Butterfly]

Wow! I can't believe the positive responses to that one line. I wish I could claim the credit, but it's one that gets used a lot on the diabetes forums I frequent. It's nice (well, sort of) to see all the newcomers.

I was at work yesterday and was telling a family about MAW. A family with a special access pass came up my ride and I noticed the kid had an MDA telethon shirt on. I mentioned it to the mom (who was not riding) and she said that they had been beneficiaries of the telethon. I asked her if she had considered MAW and explained that we have granted wishes to many kids with MD and that you do not have to be terminal to get a wish. I hope she applies.

 

[Somer]

i'm trying to decide which day we want to go to hollywood studios. is spectromagic and fantasmic both at hollywood studios? does anyone know which one is better for 3 and 5 year olds? it will help me decide which day would be best for us to visit.

 

[StefaniLyn]

i'm trying to decide which day we want to go to hollywood studios. is spectromagic and fantasmic both at hollywood studios? does anyone know which one is better for 3 and 5 year olds? it will help me decide which day would be best for us to visit.

Spectromagic is at MK. Fantasmic is at HS. If you have to choose between the two, I would suggest Spectro. Fantasmic is pretty cool, but it's dark and there is a lot of noise and unexpected surprises that may be a little scary for the 3 year old.

 

[Somer]

Spectromagic is at MK. Fantasmic is at HS. If you have to choose between the two, I would suggest Spectro. Fantasmic is pretty cool, but it's dark and there is a lot of noise and unexpected surprises that may be a little scary for the 3 year old.

thank you

 

[Corrine 1973]

thank you

I just wanted to warn you that (I could be wrong) but I don't think that Spetromagic runs everyday. I would hate for you to get there just to find out that it isn't running that day.

 

[Somer]

I just wanted to warn you that (I could be wrong) but I don't think that Spetromagic runs everyday. I would hate for you to get there just to find out that it isn't running that day.

oh, thanks. i was looking at the schedule and thinking that the 2 shows were at the same park, but they aren't both scheduled on the same day. now i know they are at 2 different parks, so i can be sure to go on those days.
whew...this is taking more brain power than i thought it would

 

[maroo]

Having post rip blahs! The house is still a mess and everything is still not all unpacked.

I have finished up to day 3 on Devon's trip report, but am not sure what to do with day 4. We spent it at Legoland.

We are also back into all the doctors appts. We were in for Devon's check-up on Monday. He has to have lots of blood work done before school starts. Also, he won't be able to get his treatment before school starts. Not the way we wanted to start the school year! It all may be a mute issue anyway, because Devon has a large area on his leg that they are concerned may be the start of cellulitis.

Just wish we could be back at Disney and way from it all.

I am so sorry that you are having post trip blahs! Awesome on the TR! And for day 4, just tell us about Legoland! It will be awesome to hear about it!

Well life has been so busy lately. So you can check out my Day 5 (which has been on for awhile and Day 6 updated this morning.

As some of you know Andrea will be having an open heart surgery soon. The date is August 19th and she will more than likely be spending her 9th birthday in the hospital. She is handling all this so great. I have set-up a carepage if you would like to visit it is at: www.carepages.com her page name is andreaavinklovespugs

Hope everyone is having a great summer and trips.

Diane

I will definitely check this out...You guys will be in my prayers.

Cajunfan was sharing this story with me and I was able to catch it on the news. This was a story that happened in the Nashville Tn. area. You can watch the actual newscast on www. newschannel5.com but I will post the story below. I know there will be several families leaving on their trips and with Wish trips there are more people that know your travel dates. I did not want to worry people by passing on this story but I thought it might help us plan alittle better. But I am glad this family has good neighbors and it all worked out well for them. Please read below:

SMYRNA, Tenn.- Smyrna Police say a group of teenagers took advantage of a sick child.

While Dillon Galland was away on a Make A Wish vacation, officers say five teens cleaned out his family's house, but those suspects did not get very far.

Police said those teen burglars hit just after midnight Thursday not knowing someone was keeping a close eye on what they were doing the entire time.

On Jenkins Court in Smyrna, a watchful neighbor saw a burglary happening early Thursday morning. After a quick call to 911, police had all the information they needed.

"That we did have five subjects and what they appeared to be carrying out of the residence and in the vehicle. And then she gave a good vehicle description. Fortunately, we had an officer close by," said Bobby Gibson with Smyrna Police.

That officer rushed down Enon Springs Road, and ran right into the suspects. But the officer kept after the car full of suspects.

"Fortunately, it was a very short pursuit and the driver of it decided to stop," explained Gibson.

Three suspected burglars were inside the Ford Taurus. One of them jumped out of the car and took off running, but police caught up with him, and eventually arrested Demarcus Thompson, 18, Kerron McCroskey, 18, and a juvenile.

Police said the teens knew their victims would not be home. The family had been granted a vacation by the Make A Wish Foundation.

Dillon Galland, 10, wanted was to see the San Diego Zoo. The burglary put a damper on his trip.

"It wasn't ruined. But you know it's devastating to be so far away and knowing your house has been broken into by strangers, vulgar messages written on the walls and countertops. But we're making the best of it," said

The family said they are thankful the watchful neighbor.

First of all...this makes me sick. Second...this does worry me a bit because this also happened to a family in PA this year.

What is up with this?

Yes...when you go on your trip, maybe even have someone stay with you, leave on various lights, etc to be proactive about protecting your home - it will give you peace of mind while you are gone, too.

I am so glad I found this board and hoping I am in the right place.

My name is Dawn, we are in the very early stages of planning our daughter Madison's Make a Wish trip. The last time I planned a Disney trip I was a total control freak. This time I feel like I don't have control, so I am having some anxiety about it. We have no dates yet, as we are waiting until she is done with her chemo which won't be until the end of January.

I have been doing lots of reading here and see lots of love and support. I cannot not wait to get to know all of you.

Aw...bless your heart. Hopefully we can help you feel like you guys can get some control back. You guys will be going in 2010, right? I hope you will stay with us on here and keep asking questions, etc.

Hang in there!

Kind of a new topic. We have a MAW trip in October and are wanting to do MNSSHP. Does anyone know where a list is of what rides will not be operating on those nights. Any help would be appreciated.

Um...most of them were open in 2008. I think all of the big ones are...

There are also a lot of special characters out and the special parade and fireworks.

I just read an update on Maroo's PTR. Rachel's condition continues to fluctuate. Maroo is understandably having a difficult time right now as she is at the MagicMeets and cannot be with Rachel and her family. Please keep them all in your prayers (Rachel, her family, and for Maroo's safe travels tomorrow).

you can read her update here:
http://www.disboards.com/showpost.php?p=33079007&postcount=689

Thank you so much for posting this.

It has been a very hard few weeks and I know I am missing updates on TR's and this thread since I have been so wrapped up in what is going on with Rachel and helping her Mom. Then I left town and got even further behind.

But I am back!!

Thank you all for your prayers!!

Well, it's time for me to de-lurk and introduce myself and my daughter Melia--especially since her trip has snuck up on us and is now only 2 months away.

When the Make A Wish volunteers came (about six months ago), Melia wished to go to Disneyworld...kind of. They actually asked her what she wanted, and she said she wanted to see Pooh. So they tried to prompt her a little and asked where Pooh lives. She looked at them and said, "At Owl's house." So they tried again and asked where Owl's house is. She looked at them like they were dumb and said, "In a tree." Basically, it was like herding cats (she was only 2 1/2), but it was finally decided and the trip was planned for October since we had a new baby coming in April and we wanted her to be a bit older before dragging her across the country. Oh, they also asked her what her favorite color was...she said black. Only my daughter.

Melia was born with a very rare metabolic disorder called Ornithine Transcarbamylase Deficiency. It's a mouthful. And it's an awful disease. Basically, her liver was missing a key enzyme needed to break down protein. Without it the byproducts turn into ammonia, which floods the body and brain and causes lethargy, stupor, seizures, brain damage, and finally coma and death. We were extremely fortunate that we were still in the hospital after her birth when things started downhill. On her third day she was flight-for-lifed to the Children's Hospital where we were very fortunate to have skilled metabolic doctors who started the appropriate treatments quickly. We were able to bring her home after about three weeks. She had special formulas and medications that they hoped would be enough to control it. For some kids (with milder forms of the disease) it can be enough, but it wasn't for Melia. We started out with blood draws every other day to check her ammonia levels, feedings using gram scales and on exact schedules, charts of everything, weight checks, alarms, liver biopsy and endless doctor's appointments, finally getting a mediport, keeping her away from illness, and essentially staring and staring at her, in the hopes that we would see the signs of an episode before it was too late--but it wasn't enough. Her body couldn't do it and she ended up hospitalized several times in her first few months.

That's when we had to come to terms that she would need a liver transplant. We ended up moving temporarily out to the Ronald McDonald House in California while she waited on the list. After three months she received a new liver, and after five months there we were able to come home. Obviously, the story goes on...but this is probably a long enough introduction.

It has been great to read through the boards, get so much info, and follow so many touching stories. Hugs to all of you and your little ones.

to the boards! You are definitely in the right place!

We are used to long stories, so feel free to share as much of it as you would like to share.

There are instructions on how to do a pre-trip report and you are more than welcome to join in on that!!

Also...PM me and let me know your dates and I can send you a planner.

Found it!!!

Here's Jayden's Pretrip report.
http://www.disboards.com/showthread.php?t=2252126

Cool! I need to check this out!!!

i'm trying to decide which day we want to go to hollywood studios. is spectromagic and fantasmic both at hollywood studios? does anyone know which one is better for 3 and 5 year olds? it will help me decide which day would be best for us to visit.

Have I sent you a planner yet?

 

[CrystalSnow]

Thanks so much for the warm welcome. It's definitely the club you never wanted to join, but at least the club has one perk--these trips!

(Kidding aside, obviously there are more important ones--like the amazing appreciation we have for our children--but those are less tangible.)

Maroo: Thanks so much. We are going October 11-17th...but I can send you more info too if it helps. It is so wonderful of you to do these for people. I will say that we aren't really "pack it all in" kind of people, especially since we'll have our six-month-old with us. But, at the same time, I don't want Melia to miss any of the really cool things either. I don't think we'll be planning on any long days (unless my parents end up coming too and might be able to do some switching off/baby duty), and we are happy to spend a lot of time and evenings at GKTW. I do think she would like the Pooh character meal though, and I also remember reading some families talking about the aquarium restaurant at Sea World, which I think she would love. But we won't be planning anything extravagant that would require extra money, because we simply don't have it. We'll be happy with whatever MAW gives us and give Melia an amazing trip with that. Luckily, she isn't the type to want or beg for toys or things, so we won't have to worry about budgeting much for souvenirs.

Thanks again...and I will try to get a pre-trip report started soon (if I can ever get this baby to sleep longer than 20 minutes at a time!).

 

[Khalana]

Hi everyone! I haven't really been back here in forever but wanted to come back and share what's going on with Lydia heartwise. Here is something copied from a messageboard I belong to:



Well, Lydia's appointment today didn't go as we had hoped. Her pressures in her lungs haven't come down anymore so the cardiologist is going to meet with the surgical team to look at our options. She will for sure be getting a heart catheterization (going in with a thin flexible wire up through her artery into the different chambers of the heart to measure pressure etc), which will be happening in the next 2-3 months. Then they might want to do surgery on her mitral valve to try to change the obstruction that's there to get better flow into her left ventricle. Major, major surgery. If they don't believe there is anyting they can do surgically to correct her problem, then we're going into the unknown as our cardiologist put it. There are drugs that might give her a better chance at life but they have only been in use for ten years so no one really knows what the long-term outcome is.

So, I kind of feel like someone kicked me in the stomach and trampled on my heart... I just feel so tired... Tired of begging God to let me have the pain and disease. Tired of being scared. Tired of waiting, holding my breath, praying until my knuckles whiten.

________________


Sorry that this got so long. Thanks for reading if you got through it all. I know we've all been there at some time or another. Thank you.