OrangeRabbit
Earning My Ears
- Joined
- Jan 6, 2009
- Messages
- 15
So here I go with my attempt at a trip report....
We went to Disney world for dd's wish trip from 2/1/09 to 2/7/09. It was their first trip and mine, dh had been quite a bit as a kid.
Since my daughters are HUGE Little House on the Praire fans, we're calling ourselves Mary, Laura, Ma and Pa on the Disboards. Actually we often do call ourselves that!!!
Our Cast:
Mary is our wish child and is 3 1/2 years old. She was diagnosed with a rare autoimmune disease last May called Juvenile Dermatomyositis. It's a muscle weakening disease with skin involvement and sometimes other systems as well. She had a persistant rash on her cheeks that we went to see the dermatologist for thinking we would get a cream..... and then we got this diagnosis. It was only in hindsight that I realised she was moving slower - taking longer to get up the stairs and climb into her car seat. I had attributed it to just being two years old and interested in every piece of dirt along the way. She was also tired, but she was also giving up her nap at the time, so I just attributed it to that. In the two weeks between diagnosis and starting treatment, she got a lot weaker. The worst moment was when she put her foot up on the step and said "mommy, I'm stuck" and couldn't get up the stairs.
She had a port put in (as well as a muscle biopsy) and started on IV steroids as well as low dose chemo, oral steroids and a few other meds. She is immunosupressed and we are also limited in being able to go outside because the sun can flare her disease and her meds make her sun-sensitive - a double danger. Anytime we go out she wears sunscreen, sunhat and sunglasses. Fortunately treatment has gone very well for her and she has regained much of her strengh back. We are so lucky to live near one of the best doctors for her disease and have a wonderful home health nurse who did her treatments. It was Mary's nurse who told us about applying for a wish.
Laura is Mary's twin sister and has been a fabulous support to her sister. It was very hard for her when Mary went for her MRI and surgerys in the beginning, because they had never really been apart. It was only in anticipation of the surgery that we did a quick Ma & Mara, Laura & Pa separate outings. Mary said to me then "Where is Laura? She's my best friend." Laura has become very scared about anything related to getting hurt during this time - it's so hard to understand what is going on with your twin when you are only three.
I'm Ma and I'm at home with the girls churning butter and such while Pa heads out to chop down the woods to build the log cabin (actually we are a little more modern than that LOL)
Mary and Laura are kind of unique Disney Wish Trippers because they didn't actually know any of the characters when dd made her wish - they had seen Pa's family movies of Disney World from when he was a child and that's why they wanted to go!!!
They are very sensitive about scary parts of stories and anything without a mother and so really hadn't seen any of the disney stories. Just before we went they found a collection of princess stories at the bookstore and liked the ones with Ariel so they were excited to meet her. I did have to reassure them however that we would NOT be seeing a shark with her at DW and that there were no sharks in our house.
They both were not sure about meeting any of the characters before we went and I let them know it was totally thier choice.
We found out about our dates for the trip about 2 weeks before we were going to go. Make-a-wish moved things along quickly for us so we could go during a less sunny time of year.
I'm going to try and post pictures of our countdown tea-cups to see if I can post pics.
We went to Disney world for dd's wish trip from 2/1/09 to 2/7/09. It was their first trip and mine, dh had been quite a bit as a kid.
Since my daughters are HUGE Little House on the Praire fans, we're calling ourselves Mary, Laura, Ma and Pa on the Disboards. Actually we often do call ourselves that!!!
Our Cast:
Mary is our wish child and is 3 1/2 years old. She was diagnosed with a rare autoimmune disease last May called Juvenile Dermatomyositis. It's a muscle weakening disease with skin involvement and sometimes other systems as well. She had a persistant rash on her cheeks that we went to see the dermatologist for thinking we would get a cream..... and then we got this diagnosis. It was only in hindsight that I realised she was moving slower - taking longer to get up the stairs and climb into her car seat. I had attributed it to just being two years old and interested in every piece of dirt along the way. She was also tired, but she was also giving up her nap at the time, so I just attributed it to that. In the two weeks between diagnosis and starting treatment, she got a lot weaker. The worst moment was when she put her foot up on the step and said "mommy, I'm stuck" and couldn't get up the stairs.She had a port put in (as well as a muscle biopsy) and started on IV steroids as well as low dose chemo, oral steroids and a few other meds. She is immunosupressed and we are also limited in being able to go outside because the sun can flare her disease and her meds make her sun-sensitive - a double danger. Anytime we go out she wears sunscreen, sunhat and sunglasses. Fortunately treatment has gone very well for her and she has regained much of her strengh back. We are so lucky to live near one of the best doctors for her disease and have a wonderful home health nurse who did her treatments. It was Mary's nurse who told us about applying for a wish.
Laura is Mary's twin sister and has been a fabulous support to her sister. It was very hard for her when Mary went for her MRI and surgerys in the beginning, because they had never really been apart. It was only in anticipation of the surgery that we did a quick Ma & Mara, Laura & Pa separate outings. Mary said to me then "Where is Laura? She's my best friend." Laura has become very scared about anything related to getting hurt during this time - it's so hard to understand what is going on with your twin when you are only three. I'm Ma and I'm at home with the girls churning butter and such while Pa heads out to chop down the woods to build the log cabin (actually we are a little more modern than that LOL)Mary and Laura are kind of unique Disney Wish Trippers because they didn't actually know any of the characters when dd made her wish - they had seen Pa's family movies of Disney World from when he was a child and that's why they wanted to go!!!
They are very sensitive about scary parts of stories and anything without a mother and so really hadn't seen any of the disney stories. Just before we went they found a collection of princess stories at the bookstore and liked the ones with Ariel so they were excited to meet her. I did have to reassure them however that we would NOT be seeing a shark with her at DW and that there were no sharks in our house.
They both were not sure about meeting any of the characters before we went and I let them know it was totally thier choice.
We found out about our dates for the trip about 2 weeks before we were going to go. Make-a-wish moved things along quickly for us so we could go during a less sunny time of year.
I'm going to try and post pictures of our countdown tea-cups to see if I can post pics.
