I have spent so much time on here reading about other peoples wish trips and trying to decided if Disney was the right wish for my daughter. We are in the very begining stages of wish planning. My daughter is non-verbal so we had to voice her wish for her and Disney seems like the perfect wish.
So now that we have started the process and her wish has been approved by MAW we are just waiting on dates.
Here's the back story on me and my family. I had Maddie at a mere 18 years old. I was initially told she wouldn't live hours, and the doctors had me so convinced of this I had an organ transplant team waiting to donate her organs. To my surprise she was born kicking and screaming. I was told she would only live hours, and that turned into days, which turned into weeks, that turned into months and years. Now the doctors dont really say a lot now about how long she'll live. She has hydranencephaly, wish is the absence of brain tissue that has been replaced with spinal fluid. She is kept alive by the basic function of her brain stem. The 10 years she's been here have not been the easiest and Maddie has had her ups and downs. At 3 weeks old she had a VP shunt placed. She has seizures, asthma, horrible allergies, terrible reflux, and CP. Recently we finally made the decision to have a G-tube put in just to make her life less of a struggle. We constantly worry about pneumonia, which she has had at least once a year EVERY year. (The day of her G-tube surgery is the day MAW called and said Maddie was eligible for a wish. It couldn't have come at a better time!) All in all everyday with a child like Maddie is a guessing game, so we live one day at a time. I have always included her in every aspect of my life and treat her as "normally" as i can.
The rest of my family, I have been married to my DH Fred for almost 6 years and we have an 18 month old girl named Emma. Emma has more than made up for all of the things Maddie can't do or get into. She's my crazy kid.
We have taken Maddie to Disney before a few times and it is an awesome place for special needs kids (on a wish trip or not)! She really does love it there and I can't wait to see her awesome smile when we get to go. Her year has been really rough, in an out of the hospital for various tests and such we need a break!
Everyone on here seems to be so supportive and can definately relate, I can't wait to add to our pre-trip report and of course a full update on the trip itself!
So now that we have started the process and her wish has been approved by MAW we are just waiting on dates.
Here's the back story on me and my family. I had Maddie at a mere 18 years old. I was initially told she wouldn't live hours, and the doctors had me so convinced of this I had an organ transplant team waiting to donate her organs. To my surprise she was born kicking and screaming. I was told she would only live hours, and that turned into days, which turned into weeks, that turned into months and years. Now the doctors dont really say a lot now about how long she'll live. She has hydranencephaly, wish is the absence of brain tissue that has been replaced with spinal fluid. She is kept alive by the basic function of her brain stem. The 10 years she's been here have not been the easiest and Maddie has had her ups and downs. At 3 weeks old she had a VP shunt placed. She has seizures, asthma, horrible allergies, terrible reflux, and CP. Recently we finally made the decision to have a G-tube put in just to make her life less of a struggle. We constantly worry about pneumonia, which she has had at least once a year EVERY year. (The day of her G-tube surgery is the day MAW called and said Maddie was eligible for a wish. It couldn't have come at a better time!) All in all everyday with a child like Maddie is a guessing game, so we live one day at a time. I have always included her in every aspect of my life and treat her as "normally" as i can.
The rest of my family, I have been married to my DH Fred for almost 6 years and we have an 18 month old girl named Emma. Emma has more than made up for all of the things Maddie can't do or get into. She's my crazy kid.
We have taken Maddie to Disney before a few times and it is an awesome place for special needs kids (on a wish trip or not)! She really does love it there and I can't wait to see her awesome smile when we get to go. Her year has been really rough, in an out of the hospital for various tests and such we need a break!
Everyone on here seems to be so supportive and can definately relate, I can't wait to add to our pre-trip report and of course a full update on the trip itself!
