Terry718
Mouseketeer
- Joined
- Jul 31, 2009
- Messages
- 81
Disclaimer: This is my first attempt at a pre-trip report. I'm slowly learning how to navigate this forum and not very computer literate. So please forgive any rookie mistakes I may make.
Greetings Disney Lovers! As noted in my disclaimer, I am new to all of this. I did not want to post a PTR until I had a bit more experience and had photos ready to include, but as you can see our trip is fast approaching, so I figured I would start now and hopefully improve as time goes on.
For this adventure the cast includes:
Richard - Our Make a Wish child. He will turn nine on August 18th. He loves Star Wars the Clone Wars, video games, and anything military. He's a great kid who has been thru an awful lot which I will explain below.
Katie - She's our princess. She will be four on Monday. She is beautiful inside and out. She has severe autism and is only now learning how to use words. But even without words, she can light up a room with her smile.
Tim - my DH. He's the love of my life. We've been married for ten years and despite all the challenges we've faced, our bond is strong and unwavering.
Terry - ME - Right now I am a stay at home mom. I was a professional with a rewarding career however I needed to put that on hold three years ago when Richard first became ill, which was also right around the time Katie was diagnosed. (Don't tell my husband, but I love being a SAHM!)
Ok - so don't let this be a downer. Our family is "special" but we're also very happy. We may have occasional tears, but for the most part our home is filled with laughter.
So how is it we're going to Disney in less than eight weeks?!! Well, long story short, Richard has cystic fibrosis. He was only recently diagnosed despite years of showing all the classic symptoms and a family history of the disease.
It all began three years ago. Richard was suffering with severe abdominal pain that would be excrutiating one minute and then simply go away. After months and months of taking him to the pediatrician, we finally saw a gastro who discovered Richard's kidneys were obstructed. The right one had some function, the left none. We found an incredible surgeon who attempted to correct the blockages and reconstruct the left kidney with the hope of regaining function. The first surgery went well, but as soon as we were home from the hospital, the coughing began. We were told the coughing was probably from being intubated and it would go away. It didn't.
Richard's coughing progressed to wheezing. I could go on forever describing all the doctors and all the diagnoses we were given. Nothing fit. He did have a sweat test for CF, but it was negative, so we kept looking. Meanwhile, Richard kept getting sicker and sicker. He had bouts of pneumonia, influenza, and staph infections. We were constantly running to the ER because he couldn't breathe. He spent so much time in the hospital, without answers. He missed months of school, underwent so many procedures but no answers. He became depressed and so tired of always being sick.
A few weeks ago, his home nurse arrived to help change some dressings from yet another procedure and Richard was in a foul mood. He told her he hated being sick, he wished he could do all the things he used to do, like play ball, ride his bike, sleep at a friends. Sadly, he remembers the days when he was "well". His nurse, bless her heart, contacted Make-A-Wish - and before you knew it we were booked.
My husband and I are simply overwhelmed over the prospect of this trip and frankly quite humbled by the generosity of strangers. Our initial reaction to MAW was "no way, he's not dying". But the kind hearted wish granters convinced us to put aside our pride and accept their generosity for Richard's sake. He needs this, and with that we agreed.
So our supporting cast will include my parents and two sisters. At home they are a tremendous support for us, and they kindly offered to come along and help. We are staying at GKTW - they are staying at the Contemporary. They will help with Katie so we are free to concentrate on Richard. I have so many worries and fears about Katie's needs overshadowing Richard's wants. Hopefully, they can take care of Katie and Richard will not need to sacrafice one moment of fun for her.
So that's my beginning. I hope it isn't too long for you. I feel like I am on a speeding train, trying to plan - but not plan too much - if you know what I mean. I have a billion questions but don't know where to begin. So I figure I'll spend some time here, learning from you folks.
Greetings Disney Lovers! As noted in my disclaimer, I am new to all of this. I did not want to post a PTR until I had a bit more experience and had photos ready to include, but as you can see our trip is fast approaching, so I figured I would start now and hopefully improve as time goes on.
For this adventure the cast includes:
Richard - Our Make a Wish child. He will turn nine on August 18th. He loves Star Wars the Clone Wars, video games, and anything military. He's a great kid who has been thru an awful lot which I will explain below.
Katie - She's our princess. She will be four on Monday. She is beautiful inside and out. She has severe autism and is only now learning how to use words. But even without words, she can light up a room with her smile.
Tim - my DH. He's the love of my life. We've been married for ten years and despite all the challenges we've faced, our bond is strong and unwavering.
Terry - ME - Right now I am a stay at home mom. I was a professional with a rewarding career however I needed to put that on hold three years ago when Richard first became ill, which was also right around the time Katie was diagnosed. (Don't tell my husband, but I love being a SAHM!)
Ok - so don't let this be a downer. Our family is "special" but we're also very happy. We may have occasional tears, but for the most part our home is filled with laughter.
So how is it we're going to Disney in less than eight weeks?!! Well, long story short, Richard has cystic fibrosis. He was only recently diagnosed despite years of showing all the classic symptoms and a family history of the disease.
It all began three years ago. Richard was suffering with severe abdominal pain that would be excrutiating one minute and then simply go away. After months and months of taking him to the pediatrician, we finally saw a gastro who discovered Richard's kidneys were obstructed. The right one had some function, the left none. We found an incredible surgeon who attempted to correct the blockages and reconstruct the left kidney with the hope of regaining function. The first surgery went well, but as soon as we were home from the hospital, the coughing began. We were told the coughing was probably from being intubated and it would go away. It didn't.
Richard's coughing progressed to wheezing. I could go on forever describing all the doctors and all the diagnoses we were given. Nothing fit. He did have a sweat test for CF, but it was negative, so we kept looking. Meanwhile, Richard kept getting sicker and sicker. He had bouts of pneumonia, influenza, and staph infections. We were constantly running to the ER because he couldn't breathe. He spent so much time in the hospital, without answers. He missed months of school, underwent so many procedures but no answers. He became depressed and so tired of always being sick.
A few weeks ago, his home nurse arrived to help change some dressings from yet another procedure and Richard was in a foul mood. He told her he hated being sick, he wished he could do all the things he used to do, like play ball, ride his bike, sleep at a friends. Sadly, he remembers the days when he was "well". His nurse, bless her heart, contacted Make-A-Wish - and before you knew it we were booked.
My husband and I are simply overwhelmed over the prospect of this trip and frankly quite humbled by the generosity of strangers. Our initial reaction to MAW was "no way, he's not dying". But the kind hearted wish granters convinced us to put aside our pride and accept their generosity for Richard's sake. He needs this, and with that we agreed.
So our supporting cast will include my parents and two sisters. At home they are a tremendous support for us, and they kindly offered to come along and help. We are staying at GKTW - they are staying at the Contemporary. They will help with Katie so we are free to concentrate on Richard. I have so many worries and fears about Katie's needs overshadowing Richard's wants. Hopefully, they can take care of Katie and Richard will not need to sacrafice one moment of fun for her.
So that's my beginning. I hope it isn't too long for you. I feel like I am on a speeding train, trying to plan - but not plan too much - if you know what I mean. I have a billion questions but don't know where to begin. So I figure I'll spend some time here, learning from you folks.
) and lurking on the DIS on my iPhone...when I saw this...I got up, went and got my computer, plugged it in and am now typing a note to you! 
and fell in love witht he park, however im a big kid and love most things Disney.
I am sorry she missed it, though. 
I'd demand a maternity test too!
