Haybuggsmom
Mouseketeer
- Joined
- Jul 20, 2010
- Messages
- 293
Heres an intro to our family and the members on our trip:
Our Princess Haylee (12) is the reason for this INCREDIBLE trip. She is our Dream Child
Haylee has a lot of medical issues. In September of 2010 her trip was granted through Tobys Dream Foundation of VA Beach VA. Shes the Princess of our house. She is 12 but much less cognitive wise. Some days you can completely see her pre teen side come out though. Her epilepsy causes her to have very frequent seizures. Due to her CP she is permanently in a wheelchair and cannot walk. She has a feeding tube because she does not eat. (This is actually a blessing with all the meds she takes) Haylee has cortical blindness so some her vision is on and off due to her brain damage. As the years pass it seems to be more on than off though. I have always thought her deaf diagnosis was wrong because she seems to respond appropriately to questions and statements. She has Congenital Hypotonia which is floppy muscles. One of the main reasons for her mobility issues. I feel so blessed that she was give n this trip to have a week free of the focus of medical needs for her but to remind all of us and anyone at Disney who met her what a Special Princess she is!!!
Amber (17)
Amber is the Diva of the family. She is a very talented competitive cheerleader and brings so much joy to our lives. She, like her sister, is very strong willed (wonder where they get that from?!? Haha) Amber is finishing up her last year of high school and is ready to take over the world and become a dentist. She has grown into such a beautiful young lady and I am very proud of her.
Jonathan (20)
Jonathan is Haylees protector! He is also her respite care provider. Jonathan has had his share of hospital time. In 2008, just 1 month before his 18th birthday, he was diagnosed with Testicular Cancer. He spent the entire summer of senior year having procedures for this cancer. We have been blessed with remission for over 2 years. He is Haylees buddy. You can regularly find them playing video games or watching movies together. Hes the heavy lifter here and Im glad he is at home to help us.
Neal (DH)
We found Neal when the kids were very young. Haylee was just 2. I figured after divorce I would never find someone who would love me and 2 children one of which would require lifelong care. He was immediately one of us. Neal has been proudly serving our country for over 20 years. He is currently in Kuwait for his 4th tour so he did not attend the trip with us. We are so excited to take him back for a redo we hope in May. We are so proud of him!!
Renea (Me)
I am just so blessed to be the mom of three FANTASTIC children. I am watching the older two grow into beautiful loving adults and I watch Haylee in amazement that God gave me a front row seat to such a beautiful miracle.
We were also blessed that our trip was able to be the same week as my fathers conference in Orlando. So we got to be with my mom all week and we planned our schedule to be with my father off and on as his schedule allowed.
We are originally from Hawaii. The Army moved us to VA so we do not live near my parents. My mom is a stay at home grandma so she can be available when needed. My dad on the other hand works a lot so we see him normally once every year or two depending on his schedule.
In May of 2010 her Neurologist told us he was putting her in for a Wish Trip since she was doing pretty well right now. About 2 weeks later I got a call from Joan at Tobys Dream Foundation out of VA Beach that Haylee was being granted a dream.
In June our Dream Granters Anne and Jeanne came to meet us. We had discussed how Haylee loves Disney movies and riding the rides at Busch Gardens so it was decided that she would be going to Disney. They had brought her several Disney related gifts. We filled out some papers and they said that Jeanne would contact us soon with the details. She showed us a photo album of pics she had taken at Give Kids the World. We were getting so excited already!!! We requested to go before school started because of Ambers senior year starting.
As time went by it became apparent we would not be able to go before school started. So I contacted them and asked if we could go during my fathers yearly conference. Not only could we spend time with them also but another hand with Haylee never hurts. It was decided that that would be a better time.
As I started to prepare I did an internet search and came upon the Wish Trip Thread on the DISboards. Thanks to this board I was getting prepared and making a game plan for our trip. Also this group brought another special element to our trip. I received a message asking if we would like to be a Big Give family. This is a group of talented people who make items for your trip. Not only did the packages bring fun to the planning but the items got so many compliments while we were there.
I hope you enjoy following along as much as we enjoyed the trip!
Our Princess Haylee (12) is the reason for this INCREDIBLE trip. She is our Dream Child
Haylee has a lot of medical issues. In September of 2010 her trip was granted through Tobys Dream Foundation of VA Beach VA. Shes the Princess of our house. She is 12 but much less cognitive wise. Some days you can completely see her pre teen side come out though. Her epilepsy causes her to have very frequent seizures. Due to her CP she is permanently in a wheelchair and cannot walk. She has a feeding tube because she does not eat. (This is actually a blessing with all the meds she takes) Haylee has cortical blindness so some her vision is on and off due to her brain damage. As the years pass it seems to be more on than off though. I have always thought her deaf diagnosis was wrong because she seems to respond appropriately to questions and statements. She has Congenital Hypotonia which is floppy muscles. One of the main reasons for her mobility issues. I feel so blessed that she was give n this trip to have a week free of the focus of medical needs for her but to remind all of us and anyone at Disney who met her what a Special Princess she is!!!
Amber (17)
Amber is the Diva of the family. She is a very talented competitive cheerleader and brings so much joy to our lives. She, like her sister, is very strong willed (wonder where they get that from?!? Haha) Amber is finishing up her last year of high school and is ready to take over the world and become a dentist. She has grown into such a beautiful young lady and I am very proud of her.
Jonathan (20)
Jonathan is Haylees protector! He is also her respite care provider. Jonathan has had his share of hospital time. In 2008, just 1 month before his 18th birthday, he was diagnosed with Testicular Cancer. He spent the entire summer of senior year having procedures for this cancer. We have been blessed with remission for over 2 years. He is Haylees buddy. You can regularly find them playing video games or watching movies together. Hes the heavy lifter here and Im glad he is at home to help us.
Neal (DH)
We found Neal when the kids were very young. Haylee was just 2. I figured after divorce I would never find someone who would love me and 2 children one of which would require lifelong care. He was immediately one of us. Neal has been proudly serving our country for over 20 years. He is currently in Kuwait for his 4th tour so he did not attend the trip with us. We are so excited to take him back for a redo we hope in May. We are so proud of him!!
Renea (Me)
I am just so blessed to be the mom of three FANTASTIC children. I am watching the older two grow into beautiful loving adults and I watch Haylee in amazement that God gave me a front row seat to such a beautiful miracle.
We were also blessed that our trip was able to be the same week as my fathers conference in Orlando. So we got to be with my mom all week and we planned our schedule to be with my father off and on as his schedule allowed.
We are originally from Hawaii. The Army moved us to VA so we do not live near my parents. My mom is a stay at home grandma so she can be available when needed. My dad on the other hand works a lot so we see him normally once every year or two depending on his schedule.
In May of 2010 her Neurologist told us he was putting her in for a Wish Trip since she was doing pretty well right now. About 2 weeks later I got a call from Joan at Tobys Dream Foundation out of VA Beach that Haylee was being granted a dream.
In June our Dream Granters Anne and Jeanne came to meet us. We had discussed how Haylee loves Disney movies and riding the rides at Busch Gardens so it was decided that she would be going to Disney. They had brought her several Disney related gifts. We filled out some papers and they said that Jeanne would contact us soon with the details. She showed us a photo album of pics she had taken at Give Kids the World. We were getting so excited already!!! We requested to go before school started because of Ambers senior year starting.
As time went by it became apparent we would not be able to go before school started. So I contacted them and asked if we could go during my fathers yearly conference. Not only could we spend time with them also but another hand with Haylee never hurts. It was decided that that would be a better time.
As I started to prepare I did an internet search and came upon the Wish Trip Thread on the DISboards. Thanks to this board I was getting prepared and making a game plan for our trip. Also this group brought another special element to our trip. I received a message asking if we would like to be a Big Give family. This is a group of talented people who make items for your trip. Not only did the packages bring fun to the planning but the items got so many compliments while we were there.
I hope you enjoy following along as much as we enjoyed the trip!
Can't wait to hear the rest of your Princess's story
