thesaurinis
Mouseketeer
- Joined
- Feb 22, 2007
I have been a lurker for years on the boards but very seldom have posted. I am not sure how to do a lot of the things on here so please feel free to tell me if i am struggling. 
I am a Disney nut, but unfortunately finances and my sons health issues doesn't allow for us to travel often. But this September 22-29, 2011 we are being blessed by the Dream Factory with a Dream Trip for our son.
This all started when someone tried to contact MAW for our son. MAW contacted us and told us Zachary wasn't eligible for a trip because he wasn't terminal or have a case of active/remission cancer. I was very thankful for that, but on the other hand kinda disappointed considering what Zachary has been through for the past 8 yrs. At that point MAW suggested we contact another wish granting agency. (I didn't know any others existed.) So we contacted The Dream Factory. Well like anything else there are lots of guidelines/fine lines to go by and thought for sure Zachary would have another disappointment in his life. Well much to our surprise the DF came through. Zachary orginally told them his dream was to go to Hawaii. He wanted to see a volcano and do the hula. We were shocked when he said that during the interview. His 2nd choice was the Disney Dream Cruise. When it came down to it we turned down the Hawaii trip d/t finances and I am not sure how well he will do on a 12+ hr flight with his seizures. So we are going to WDW for 3 days and the cruise for 4N/5D. The DF has been wonderful and very accomodating. I personally can't wait to volunteer for them once we get back. They have no volunteers in my area (closest chapter is 1 hr away).
Now about our Dream kid. When Zachary was born I knew immediately something was wrong. We went from having about 4 people in the room to about 8-10 coming in and out. After everything settled down the Dr's came in to talk to us. They told us our son had some interesting medical features. They finally let us see him and he was perfect in our eyes. Well come to find out after years of research/doctor appointments/surgeries Zachary has a rare syndrome called Oculo-Ectodermal Syndrome with Jaffee-Campanacci Syndrome. At birth they diagnosed him with Goldenhar Syndrome but has since re-diagnosed him. There are only about 12 reported cases of OES in the world and the Dr's have submitted Zachary's medical info to the research board to be considered the next case.
For Zachary's treatments/appointments we have to travel atleast 5 1/2 hrs. We live in Central NY and travel to Childrens Hospital Boston for all his specialists.
Zachary has had aprx 15 surgeries so far to date. Some minor and many on the major side. His largest surgery & most effected part of his body is his long bones. Zachary has tumors/lesions on his bones. Zachary has had rods placed in his femur & tibia in Feb. '09. He did very well considering. He got out of his body cast in April and underwent PT 2-3x week until Christmas. 2 weeks later Zachary fell in the hall at school and broke the femur he had surgery on. Dr's said the rod supported him from a completed break but the bone still moved. (His bones are very brittle, almost a form of osteogenesis imperfecta) So back to a cast he went. He got out of the cast in May then PT again till August. August came and Zachary was in a bounce house by himself (only way d/t his bones and high risk of breaking) until a teenager went in and did a back flip and landed on him. Well he broke the femur again. So he was casted and when we went for his 4 week check up he was complaining of pain at the top of the cast and it was a stress fracture from the cast, so they put him in a body cast again. That came off in November and he went into a brace till his Jan. appointment. In Jan it still wasn't completely healed, and the rod wasn't in the bone completely (retracting) so they decided to do surgery again to replace and undergo a bone graft again. So in Feb. '11 he had the same surgery again (10 hour surgery) and came out of the body cast in May this time since his healing process is so slow. We are doing the same thing with PT again. We just went last week and he still isn't completely healed but the bone graft is bridging so its a good sign compared to last time they said. They think it might be, because this time they used his bone instead of cadeavor and his body is accepting his own.
On top of the bone issue Zachary also deals with seizures, vision issues (almost no vision in left eye), kidney issues & cysts on the brain. Luckily through all of this he has always had a smile on his face. He is always willing to help in any way possible regardless of how he feels.
Zachary is a huge baseball fan and Country Music fan and has gotten to meet some of his idols by just charming the people he is around.
Zachary is very outgoing and loves to talk to everyone. His favorite Disney characters are Phineas & Ferb. i think he has every t-shirt made thanks to his grandma & her love for them too. So he is looking forward to seeing P&F when we are there.
Now for the rest of the family: I am Jodi (37) I have a FT home daycare that I will be closing in December to go back to school to finish my nursing degree. Robert is my DH (39-but he tells everyone he is 29. LOL). He is the best dad and a big kid himself. He is a truck driver for a local company that hauls Budweiser beer. Thank god he is home everyday. Then there is our DD Marissa (15). She is your typical teenager all into her friends, computers, & Dance. She was born with a heart condition and had 2 open heart surgeries by the time she was 9 months old. 15 yrs later you would never be able to tell. She is great in so many ways, very smart, active, loving, generous & caring. She looks out for her brother all the time.
I hope you like this as we go along. Any questions please don't hesitate to ask because the Dr's and ourselves are still learning all that goes along with Zacharys syndrome. (there is alot more but these are the main issues without putting his whole medical info out there.)
I am a Disney nut, but unfortunately finances and my sons health issues doesn't allow for us to travel often. But this September 22-29, 2011 we are being blessed by the Dream Factory with a Dream Trip for our son.
This all started when someone tried to contact MAW for our son. MAW contacted us and told us Zachary wasn't eligible for a trip because he wasn't terminal or have a case of active/remission cancer. I was very thankful for that, but on the other hand kinda disappointed considering what Zachary has been through for the past 8 yrs. At that point MAW suggested we contact another wish granting agency. (I didn't know any others existed.) So we contacted The Dream Factory. Well like anything else there are lots of guidelines/fine lines to go by and thought for sure Zachary would have another disappointment in his life. Well much to our surprise the DF came through. Zachary orginally told them his dream was to go to Hawaii. He wanted to see a volcano and do the hula. We were shocked when he said that during the interview. His 2nd choice was the Disney Dream Cruise. When it came down to it we turned down the Hawaii trip d/t finances and I am not sure how well he will do on a 12+ hr flight with his seizures. So we are going to WDW for 3 days and the cruise for 4N/5D. The DF has been wonderful and very accomodating. I personally can't wait to volunteer for them once we get back. They have no volunteers in my area (closest chapter is 1 hr away).
Now about our Dream kid. When Zachary was born I knew immediately something was wrong. We went from having about 4 people in the room to about 8-10 coming in and out. After everything settled down the Dr's came in to talk to us. They told us our son had some interesting medical features. They finally let us see him and he was perfect in our eyes. Well come to find out after years of research/doctor appointments/surgeries Zachary has a rare syndrome called Oculo-Ectodermal Syndrome with Jaffee-Campanacci Syndrome. At birth they diagnosed him with Goldenhar Syndrome but has since re-diagnosed him. There are only about 12 reported cases of OES in the world and the Dr's have submitted Zachary's medical info to the research board to be considered the next case.
For Zachary's treatments/appointments we have to travel atleast 5 1/2 hrs. We live in Central NY and travel to Childrens Hospital Boston for all his specialists.
Zachary has had aprx 15 surgeries so far to date. Some minor and many on the major side. His largest surgery & most effected part of his body is his long bones. Zachary has tumors/lesions on his bones. Zachary has had rods placed in his femur & tibia in Feb. '09. He did very well considering. He got out of his body cast in April and underwent PT 2-3x week until Christmas. 2 weeks later Zachary fell in the hall at school and broke the femur he had surgery on. Dr's said the rod supported him from a completed break but the bone still moved. (His bones are very brittle, almost a form of osteogenesis imperfecta) So back to a cast he went. He got out of the cast in May then PT again till August. August came and Zachary was in a bounce house by himself (only way d/t his bones and high risk of breaking) until a teenager went in and did a back flip and landed on him. Well he broke the femur again. So he was casted and when we went for his 4 week check up he was complaining of pain at the top of the cast and it was a stress fracture from the cast, so they put him in a body cast again. That came off in November and he went into a brace till his Jan. appointment. In Jan it still wasn't completely healed, and the rod wasn't in the bone completely (retracting) so they decided to do surgery again to replace and undergo a bone graft again. So in Feb. '11 he had the same surgery again (10 hour surgery) and came out of the body cast in May this time since his healing process is so slow. We are doing the same thing with PT again. We just went last week and he still isn't completely healed but the bone graft is bridging so its a good sign compared to last time they said. They think it might be, because this time they used his bone instead of cadeavor and his body is accepting his own.
On top of the bone issue Zachary also deals with seizures, vision issues (almost no vision in left eye), kidney issues & cysts on the brain. Luckily through all of this he has always had a smile on his face. He is always willing to help in any way possible regardless of how he feels.
Zachary is a huge baseball fan and Country Music fan and has gotten to meet some of his idols by just charming the people he is around.
Zachary is very outgoing and loves to talk to everyone. His favorite Disney characters are Phineas & Ferb. i think he has every t-shirt made thanks to his grandma & her love for them too. So he is looking forward to seeing P&F when we are there. Now for the rest of the family: I am Jodi (37) I have a FT home daycare that I will be closing in December to go back to school to finish my nursing degree. Robert is my DH (39-but he tells everyone he is 29. LOL). He is the best dad and a big kid himself. He is a truck driver for a local company that hauls Budweiser beer. Thank god he is home everyday. Then there is our DD Marissa (15). She is your typical teenager all into her friends, computers, & Dance. She was born with a heart condition and had 2 open heart surgeries by the time she was 9 months old. 15 yrs later you would never be able to tell. She is great in so many ways, very smart, active, loving, generous & caring. She looks out for her brother all the time.
I hope you like this as we go along. Any questions please don't hesitate to ask because the Dr's and ourselves are still learning all that goes along with Zacharys syndrome. (there is alot more but these are the main issues without putting his whole medical info out there.)
Your kiddo sounds like a real trooper to have dealt with all those surgeries over and over. You all deserve a great vacation- that's really cool that they are doing the cruise and the parks!! Sounds great! Can't wait to read more. 
I am such a organized planner and doing something new is so out of my comfort zone, but I know we will all survive without specific plans and just flying by the seat of our pants. Or atleast I keep telling myself that because its Zacharys trip, so its whatever he wants. 
