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Old 07-28-2011, 12:49 PM   #1
thesaurinis
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Zachary's Dream Factory Dream Trip 9/22-9/29/2011

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.)
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We cruised the dream 9/25-9/29/2011 for Zacharys Dream Factory Trip.





Zacharys trip Report: http://www.disboards.com/showthread....1#post42079141

Last edited by thesaurinis; 07-29-2011 at 05:43 AM.
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Old 07-29-2011, 08:26 AM   #2
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Welcome and that is a great PTR start! I'm surprised that MAW said terminal or cancer/remission. It is supposed to be life threatening but not necessarily terminal...My son's kidney failure although terminal up to about 60+ years ago is not terminal now due to transplants/dialysis.... so I'm sorry that was a bad experience but I'm glad for the Dream Factory I have read some DF PTRs and thought theirs were awesome!.... It sounds like Zachary is a tough little guy and a trooper! I hope that his dream is more than he could ever dream! Take care!
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Old 07-29-2011, 12:45 PM   #3
IrishIz
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That's odd about MAW because they don't need to be terminal...it's right on their website.

Audrey isn't terminal but she has a life threatening condition which is their requirement. Whoever told you they have to be terminal is 100% wrong. It might be worth contacting MAW main office and just letting them know the local office is confused...just so that somebody else doesn't miss out because of their mistake.
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Old 07-29-2011, 08:06 PM   #4
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Hiya! 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.
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Old 07-29-2011, 10:15 PM   #5
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Smile

I' m sorry it's been so long since I have posted, but we have been really busy at church. We have been participating in a lot of programs there. We have been in contact with our wish granter this week. I will leave an update on Preston's pre-trip report. I 'm sorry I haven't been able to figure out how to do a signature link yet. Synovial
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Old 07-29-2011, 10:17 PM   #6
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to the boards and to the Dream Factory family!!! My daughter had a dream granted by the Dream Factory. We are going to Disney in October!! I am going to volunteer when we get back as well!

Can't wait to hear all about your trip & hopefully see some pics of your cute little man!!

Happy planning!!
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Pre-trip report:
http://www.disboards.com/showthread.php?t=2701134
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Old 08-02-2011, 07:35 AM   #7
thesaurinis
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Quote:
Originally Posted by disneymomma01 View Post
to the boards and to the Dream Factory family!!! My daughter had a dream granted by the Dream Factory. We are going to Disney in October!! I am going to volunteer when we get back as well!

Can't wait to hear all about your trip & hopefully see some pics of your cute little man!!

Happy planning!!
Thanks so much for subbing. If I knew how to post pics I would. Could you possibly tell me how? I am so new to this trip report thing. LOL
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We cruised the dream 9/25-9/29/2011 for Zacharys Dream Factory Trip.





Zacharys trip Report: http://www.disboards.com/showthread....1#post42079141
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Old 08-02-2011, 09:34 AM   #8
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Quote:
Originally Posted by thesaurinis View Post
Thanks so much for subbing. If I knew how to post pics I would. Could you possibly tell me how? I am so new to this trip report thing. LOL

Okay...you need to get a www.photobucket.com account. Then you upload the pictures to photobucket (it is a free account) then you copy the IMG code that photobucket provides & paste it into your trip report & VOILA!! You have pictures!!
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Pre-trip report:
http://www.disboards.com/showthread.php?t=2701134
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Old 08-02-2011, 09:36 AM   #9
disneymomma01
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Quote:
Originally Posted by Synovial View Post
I' m sorry it's been so long since I have posted, but we have been really busy at church. We have been participating in a lot of programs there. We have been in contact with our wish granter this week. I will leave an update on Preston's pre-trip report. I 'm sorry I haven't been able to figure out how to do a signature link yet. Synovial

If you go to the light blue bar at the top that says User CP, click that & just look for the signature section!! That is how you add the link for your trip report & all of your siggy info!! HTH!!
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Carrie-homeschooling mommy to 1 very adorable & quite the diva, Katelyn. Planning Katelyn's Dream Factory trip to Disney World October 1-7!! YAY!!
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Pre-trip report:
http://www.disboards.com/showthread.php?t=2701134
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Old 08-04-2011, 11:29 AM   #10
thesaurinis
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I am going to attempt to post some pictures. I won't guarantee success quite yet though. LOL

This here is Zachary after his surgery in February '11.


This is the DH & I. We were camping.



This is a family picture taken at Zachary's 1st communion in May. His sister was his helper with getting him around in his wheelchair. She is really good with him.
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We cruised the dream 9/25-9/29/2011 for Zacharys Dream Factory Trip.





Zacharys trip Report: http://www.disboards.com/showthread....1#post42079141
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Old 08-07-2011, 06:45 PM   #11
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Love the pics and love his sign he is holding at communion!
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Old 08-09-2011, 08:53 AM   #12
thesaurinis
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Still waiting for all the final paperwork for Zachary's trip. We have a couple more weeks before the 30 day mark when we will receive them. I was just hoping just maybe we would get them early. I know its official but in my mind its not official till I have the papers.

The past few days have been tough for Zachary. He has had a couple more seizures, but still nothing to really compare them to as for what could be triggering them. We are keeping a very specific log as to what he eats, what he is doing, and the seizure itself details. I hope they find out answers real soon.

Today we are off to his hematology appointment. They have referred us there due to his severe bruising issues he is having. They have me scared to no end with this appointment. They said he could have a blood issue and that would only mean more appointments/meds/treatments for the little guy. I am worried because this office is were most people go when they find out their children have cancer/leukemia. I have been praying for the past week this isn't the case, but I know god has his own path for us all.

Last night I did take him to a local state park to get his mind off of the appointment. Zachary & his sister had a blast. It was a beautiful place and we will be going back before the snow flies in this area.

So please all take a moment and say a prayer for Zachary for his appointment this afternoon.
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We cruised the dream 9/25-9/29/2011 for Zacharys Dream Factory Trip.





Zacharys trip Report: http://www.disboards.com/showthread....1#post42079141
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Old 08-09-2011, 11:49 AM   #13
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I hope his appt. held good news!

i would love to go on a Disney cruise one day-I think a land/sea combo like you are doing will be wonderful. Can't wait to read more
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Old 08-09-2011, 02:44 PM   #14
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prayers going up! Hope his appointment went well!
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Old 08-16-2011, 10:45 AM   #15
thesaurinis
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Nothing new to post as of yet, except we are working on our fish extenders for the cruise part of the trip. So many first time things we are doing its so exciting. We are aprx. 36 days from our travel date. It will be so real when all the actual paperwork is in our hands. I have done the online check in for the cruise so I know its real but I am the type to want the real papers in my hands.

Zachary did have a scare the other day. He fell while walking and has a huge bruise and hematoma on his knee (his bad leg of course). We almost took him for xrays because he was in pain and it looks nasty, but decided not to after talking to his uncle who works in the ER and is a PA and said it looks to be he just banged it really good. I have been praying that, thats all it is. It is looking a little better after a couple of days so thats a good sign.

School will be starting in just over 2 1/2 weeks (YEAH!!!!!!!!!!!!!) so we can be back to routine. Maybe it will help with getting his mind off the trip so much. All we hear are tons of questions regarding the cruise and its hard because we dont know the answers ourselves since we have never been.

I will post any other updates when we have some.
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We cruised the dream 9/25-9/29/2011 for Zacharys Dream Factory Trip.





Zacharys trip Report: http://www.disboards.com/showthread....1#post42079141
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