karsmommie
KaronsPurpleMission
- Joined
- May 1, 2010
Hello everyone. I am hoping that I am doing this right 
This is our pre-trip report for my oldest daughter's MAW trip to Walt Disney World we are set to get our rental SUV on October 2, 2010 at 8 am and to head out soon afterwards for Florida from our home state of Texas. Im very sorry if this is long please forgive me.
Our Cast of Characters are:
Miss Karon the Make A Wish Princess
. Karon is the oldest of 3 children and is 7 (and half she would make sure that is known). Karon is in 2nd grade and homeschooled. She is my girly girl most times. She has intractable epilepsy due to her metabolism, she has anxiety, over active bladder, lots of times her immune system is nonexistant she also has apashia and some other diagnoses (I dont want to bore anyone with a bunch of diagnoses I can't pronounce much less spell right half the time Why can't medical temrs be simple?). Karon has several seizures a day many of which we dont see but we see the side effects of. Karon also has a very high pain tolerance that causes a lot of problems. Karon has been having seizures since she was 2 weeks old we have been to 5 nurologist and 1 epilelptologist who finally got us some answers. Karon's seizures are not controlled by any means but her really bad seizures are few and far between. Her specialist we see now is 14 or 8 hours drive a way from home every 6 months at least. Karon was hospitalized a lot last year and quite a bit this year. Karon will sit there and tell the nursees or doctors where to put the iv's its funny she has actually ran some nurses off they are scared to stick her. Karon is a big advocate for Epilepsy awareness. Everything purple doesn't matter the shade of purple as long as its purple. She makes purple epilepsy ribbons with help to help spread the awareness.
Karon's Guardian Angel: Boston (4 year old service dog)
Boson is Karon's seizure alert service dog. He was just a birthday/Christmas gift to her 3.5 years ago. Within 4 days of having him he alerted to Karon having a grandmal in her bedroom. Couple days after that seizure she had another one and quite breathing Boston was right there alerting to the whole thing. We went through fundraising last year to have him certifeid to be able to go with ehr everywhere. (He didnt have to be certified but we wanted it done in case the law ever changed). Boston is also the ice breaker between Karon and anyone she meets. Karon does not go near strangers if she can help it.
Mr. Cameron - Karon's knight
- Cameron is Karons 6.5 year old brother. Cameron is in the 1st grade and homeschooled. He has never met a stranger and likes anyone he says he'd go home with anyone he meets and he also invites everyone to our house when he meets a new person (watch out Florida he'll want everyone to come visit at our house). Cameron is very protective of his sister Karon when she is not feeling well. Cameron also has ADHD so this is going to be a huge adventure. Cameron will tell anyone about Boston and Karon he is also an advocate for epilepsy. He doesn't like people staring pointing or calling Boston he will go up to the ones doing it and say "he's a seizure alert he helps my sister."
Miss Lilly-Grace - Karon's mini nurse
Miss Lilly-Grace is Karon's little sister. Lilly-Grace will turn 1 year old 2 days before we leave......agh!!! Lilly-Grace will go up to Karon and take a book and her towel and lay with her for hours when Karon isn't feeling well. Whne Karon takes medicine Lilly-Grace thinks she has to take medicine so Karon will give her an empty syringe or one with water in it so she can take hers too. (Lilly-Grace has had to ake medicine since she was 3 weeks old for reflux and allergies)
Momma - That's me my name is Elizabeth.
I am a single mommie of all three kids and love my kids so very much. I am mommie, nurse to my kids, housekeeper, kids taxi driver, and nurse/doctor call waiter.
Pawpaw -
(this is my dad we currently live with him he helps us we help him)
My dad is our Chauffeur to all the medical trips out of town and on our wish trip. He is the best Pawpaw my kids could have he has been there everytime that any of them have been in the hospital (he works in our hometown hospital in maintance so hes ushually around)
KARON's MAW/GKTW trip:
Karon's peditrician sent in Karon's referral for MAW this past spring.
As of July 27, 2010 we got a letter in the mail that Karon's MAW trip is being granted through MAW of the Texas Plains. Karon's wish is to go have "Tea with the Princess" in Florida. Karon made (with all our help) a poster of what she wanted her wish to be. he put a picture of our hometown hospital on it with a big red circle and x saying no hospitals, no test, no iv's, no shots, no doctors or nurses Karon aslo put colorings from Disney princess and Toy story (for Cameron) and Minnie (for Lilly-Grace).
Karon's MAW trip is set for us picking up the SUV rental from hometown on Ocotber 2, 2010. We are staying at Give Kids the World Village. This is the first trip non medical. Im still not sure what to pack, to do before hand or anything else like that. Karon says just a swimsuit and pj.s lol!
SO if anyone has any hints, suggestions advice please let me know.....
This is our pre-trip report for my oldest daughter's MAW trip to Walt Disney World we are set to get our rental SUV on October 2, 2010 at 8 am and to head out soon afterwards for Florida from our home state of Texas. Im very sorry if this is long please forgive me. Our Cast of Characters are:
Miss Karon the Make A Wish Princess
. Karon is the oldest of 3 children and is 7 (and half she would make sure that is known). Karon is in 2nd grade and homeschooled. She is my girly girl most times. She has intractable epilepsy due to her metabolism, she has anxiety, over active bladder, lots of times her immune system is nonexistant she also has apashia and some other diagnoses (I dont want to bore anyone with a bunch of diagnoses I can't pronounce much less spell right half the time Why can't medical temrs be simple?). Karon has several seizures a day many of which we dont see but we see the side effects of. Karon also has a very high pain tolerance that causes a lot of problems. Karon has been having seizures since she was 2 weeks old we have been to 5 nurologist and 1 epilelptologist who finally got us some answers. Karon's seizures are not controlled by any means but her really bad seizures are few and far between. Her specialist we see now is 14 or 8 hours drive a way from home every 6 months at least. Karon was hospitalized a lot last year and quite a bit this year. Karon will sit there and tell the nursees or doctors where to put the iv's its funny she has actually ran some nurses off they are scared to stick her. Karon is a big advocate for Epilepsy awareness. Everything purple doesn't matter the shade of purple as long as its purple. She makes purple epilepsy ribbons with help to help spread the awareness. Karon's Guardian Angel: Boston (4 year old service dog)
Boson is Karon's seizure alert service dog. He was just a birthday/Christmas gift to her 3.5 years ago. Within 4 days of having him he alerted to Karon having a grandmal in her bedroom. Couple days after that seizure she had another one and quite breathing Boston was right there alerting to the whole thing. We went through fundraising last year to have him certifeid to be able to go with ehr everywhere. (He didnt have to be certified but we wanted it done in case the law ever changed). Boston is also the ice breaker between Karon and anyone she meets. Karon does not go near strangers if she can help it.
Mr. Cameron - Karon's knight
- Cameron is Karons 6.5 year old brother. Cameron is in the 1st grade and homeschooled. He has never met a stranger and likes anyone he says he'd go home with anyone he meets and he also invites everyone to our house when he meets a new person (watch out Florida he'll want everyone to come visit at our house). Cameron is very protective of his sister Karon when she is not feeling well. Cameron also has ADHD so this is going to be a huge adventure. Cameron will tell anyone about Boston and Karon he is also an advocate for epilepsy. He doesn't like people staring pointing or calling Boston he will go up to the ones doing it and say "he's a seizure alert he helps my sister." Miss Lilly-Grace - Karon's mini nurse
Miss Lilly-Grace is Karon's little sister. Lilly-Grace will turn 1 year old 2 days before we leave......agh!!! Lilly-Grace will go up to Karon and take a book and her towel and lay with her for hours when Karon isn't feeling well. Whne Karon takes medicine Lilly-Grace thinks she has to take medicine so Karon will give her an empty syringe or one with water in it so she can take hers too. (Lilly-Grace has had to ake medicine since she was 3 weeks old for reflux and allergies)
Momma - That's me my name is Elizabeth.
I am a single mommie of all three kids and love my kids so very much. I am mommie, nurse to my kids, housekeeper, kids taxi driver, and nurse/doctor call waiter.
Pawpaw -
(this is my dad we currently live with him he helps us we help him) My dad is our Chauffeur to all the medical trips out of town and on our wish trip. He is the best Pawpaw my kids could have he has been there everytime that any of them have been in the hospital (he works in our hometown hospital in maintance so hes ushually around)
KARON's MAW/GKTW trip:
Karon's peditrician sent in Karon's referral for MAW this past spring.
As of July 27, 2010 we got a letter in the mail that Karon's MAW trip is being granted through MAW of the Texas Plains. Karon's wish is to go have "Tea with the Princess" in Florida. Karon made (with all our help) a poster of what she wanted her wish to be. he put a picture of our hometown hospital on it with a big red circle and x saying no hospitals, no test, no iv's, no shots, no doctors or nurses Karon aslo put colorings from Disney princess and Toy story (for Cameron) and Minnie (for Lilly-Grace).
Karon's MAW trip is set for us picking up the SUV rental from hometown on Ocotber 2, 2010. We are staying at Give Kids the World Village. This is the first trip non medical. Im still not sure what to pack, to do before hand or anything else like that. Karon says just a swimsuit and pj.s lol!
SO if anyone has any hints, suggestions advice please let me know.....
Your family sounds lovely. 
