OUR SPIRITED BEGINNING = Casper's Magical Journey to Disney

[Twice_as_Nice]

Well I am going to jump in and begin our pre-trip report. I have never done one so bear with me.

First I should introduce us we are a family of 5 me (Aim), hubby (Will), Anastasia (Asia) who is 8, Ephraim (Iggy) who is 7 and Casper (BOO) who is 28 months old. I no longer have pink hair this was for a fundraiser.

This will be our 2nd family trip to WDW but our first trip as a family of 5. Our first trip was December 2010 and it was FREEZING. We went with the 4 of us, minus Casper, and my mother in law and my sister who was then 16. It was an amazing trip and while there we booked a bounce back for August 2011 to stay at the Wilderness Lodge. Little did we know that God had other plans for our family and a couple months after arriving home from our trip we found out we were expecting a shocking baby #3 and then only a few short months after that he entered the world and blessed our family at 26 weeks gestation.

For our first trip we stayed at the Caribbean Beach Resort and were lucky enough to get free dining for our stay. We spent 7 days and had the greatest time. We have never seen our kids so blissful and just full of joy that we couldn't wait to go back.

The logistics for our trip:
Where: Port Orleans Riverside
When: August 18th -30th
We will be visiting the Wizarding World of Harry Potter also because we are HUGE Harry Potter fans. Our kids both are avid readers and started reading the series when they were 5 & 6 respectively (yes we don't censor their reading within reason, if they are able and willing have at it)
We will also be including the DDP because there is no way I am going to cook on vacation and we like the luxury and ease of having it paid for before hand and just being able to order what we want.

In the next post I will post some bios of each of us and the inspiration behind this trip, our little man Casper.


Meet Us
Inspiration for our trip
Dining Plans

 

[Twice_as_Nice]

Will and I met in University, it's so cliche but honestly from the moment I saw him I knew I was going to marry him. It was my first year of Undergrad and his first year of his Masters Degree, yes an older man, he was the choir director for the choir for our student mass at our University. Despite my lack of musical and singing ability I joined the choir to be with my friend but all the while I really joined just to get to know him better.

We started dating in 2000 and have been together ever since, we were married in 2003 and will be celebrating 11 years of marriage this June.

Will works for the same University that we are alumni of after we spent a couple years pre marriage and pre kids in the "big city" where he was a patent agent for a major law firm.

He is an AMAZING daddy and is the greatest husband a woman could want. He LOVES to bake and cook, he plays the piano and guitar and also sings in choirs and leads them. He is my rock. His favorite Disney character is Buzz Lightyear. He is a "mathematician" with a degree in Combinitorics and Optimization, ya I don't know either, and has a LONG history of winning many many math competitions from grade school well into University. He can learn anything which makes me totally jealous.

Last thing you should know about Will he is not really a ride guy. He doesn't enjoy rides that are rough and too intense no roller coasters.

His FAVORITE rides are Soarin' and Test Track

ME Amy.

I am a stay at home mom, before giving birth to our special guy I worked as a program co-ordinator for a local non profit organization that supports families of special needs children. I am an "Artsy" with a degree in Social Development Studies and fine art. My dream has always been to be a classical animator at Disney, maybe one day I will get to somehow do something related even remotely to it the animation "class" in Hollywood studios is close enough for me.

My FAVORITE ride at Disney is Space Mountain and I have been known to ride it MULTIPLE times over all by myself because up until now no one would go on it with me. Though both Asia and Iggy want to give it a try this time.

Will and I are a good mix of dreamer (Me) and realist (him) we balance each other out and work well together.

I LOVE to "wear" my baby, anything to be close to him and so you will see me with Casper in a carrier likely 90% of the time. Since he spent 4 months in a NICU over 2.5hrs away from our home I just want to hold him every chance I get.

Asia is 8 and will be turning 9 a couple weeks before our trip.

She is a girly girl but definitely LOVES her "tomboy" stuff. I think it's because she has a little brother and they are only 15 months apart age wise that he influences heavily what she is into. Don't get me wrong she was in ballet, Iggy was also, and loves tutu's and dressing up but she also LOVES Star Wars, Minecraft and Power Rangers.

Asia has had her own difficulties, when she was 8 months old she was diagnosed with Epilepsy and we spent many years trying to control her 5 seizure types that she experienced. We tried 11 different seizure meds and she has had many many tests until finally we found one that works. She also has SPD and global developmental delay which affects her mostly socially. BUT she has been off of her seizure meds for almost a year now and is doing well with very little break through seizures. She is also doing fantastically in school and is an avid reader. She has a kind soul and is a wonderful nurturing big sister.

Her favorite character is Rapunzel and her favorite ride from our first trip is the Tomorrowland Transit Authority she must have rode it 12 times our last trip and she talks about it ALL the time.

Iggy is 7 years old and is quite the handfull.

I suppose he is the typical middle child in that he is quiet and reserved but can have outbursts of energy and attitude at the drop of a hat. Iggy is known everywhere for being VERY shy. He spent the first year of kindergarten and didn't speak a single word to his teacher, yet when at home he talks ALL the time.

He ADORES his baby brother. Honestly to say adores doesn't even do it justice it's like Casper competes him. Everything comes easily to Iggy and as a result he can often just sit back and not try so we are constantly trying to encourage him to challenge himself. Iggy has suffered from his own medical issues and for 2 years we spent much time in and out of the hospital with admissions until we finally found out he suffers from Familial Mediterranean Fever and Migraines. Since seeing a neurologist and rheumatoid doctor he is doing very well.

Iggy LOVES lacrosse and tae kwon do. He is CRAZY for Dinosaurs, Captain Jack Sparrow and the Pirates of the Caribbean movies but his FAVORITE movies are the Honey I Shrunk the Kids movies. He has loved these since he was 3 and went CRAZY for the Honey set at Disney.

Though he is very shy and so quiet he has an enormous heart and is the first to help anyone and loves to think of ways we can help others charity wise. He also has been a model with a local modelling agency since he was 4 and has done print ad work for OshKosh, Gap and others as well as runway work for Gap, Oshkosh and local stores. He also had the honor of being "brand ambassador" and Spokes Boy for a Canadian boys clothing company. Ya he's cute if I do say so myself.

His favorite character is Captain Jack Sparrow as well as Peter Pan and they are both his favorite rides.

Disney brought Iggy to life. Seriously it was there that we saw a side of him we had never seen before. All of a sudden my shy, reserved, introvert son became this

So naturally I knew we HAD to go back. I want to see this boy again.

Okay so my NEXT post will be ALL about our special little man and the motivation for this spur of the moment "WE HAVE TO GO TO DISNEY ASAP" trip.

 

[Twice_as_Nice]

As I said in my first post god had other plans for our family and on Sept 26th 2011 after my water broke a week before and a long week of desperately trying to not go into labor and to get the baby all the shots and things he needed we welcomed Casper Blasie into our family at 26 weeks gestation as a result of IUGR.

He was 1lb 8oz of miracle.

As you would expect from a baby born so soon Casper battled many things during his 115 day stay in the NICU. Apnea, Brachycardia, 2 bouts of Necrotizing Enterocolitis, a animal protein allergy that ate through a portion of his intestine, ROP, Jaundice, severe anemia that required more than 10 blood transfusions and 4 complete red cell transfusions, PDA, IVH. The list goes on.

During this time he was 2.5 hours away from our home in the Children's hospital so our family was forced to live in 2 places at once. We were torn. We didn't want to disrupt the kids school year, as they had just started SK and grade 1, so for the first little bit they stayed at home with my MIL while we were with Casper and then after we would travel the long winter roads daily to be with Casper after they went to school and then come home to meet them from the bus. Unfortunately the Ronald McDonald House was undergoing a 2 year total renovation so they had limited space of 8-10 rooms in a local hotel which we utilized on weekends as a family and some weekdays when one of us would stay when things were touch and go.

Eventually our family was reunited and Casper joined us at home.

Unfortunately his journey did not end when he arrived home. Since coming home he has endured months and months of inpatient care in the local and Children's hospitals. He has Failure to thrive and was 100% G tube fed until a recent almost 2 month admission to an inpatient feeding therapy program 2.5 hours away where he came home tube free and has since had it removed last month. Now he battles Hydrocephalus, Cerebral Palsy, FTT, Septo-optic dysplasia, Seizures, Global Developmental Delay, a tumor on his pineal gland, Short Stature and an extremely rare recessive genetic disorder that causes bone marrow failure called Fanconi Anemia. FA has a life expectancy of 15-25yrs currently.

Developmentally and physically he is at a 9 month level, he does not speak but does use some signs and does make sounds. His vision is limited from the septo-optic dysplasia but he does cruise hanging onto things and just the other day stood without holding onto anything for a couple seconds for the first time. He sees many specialists and has physical, occupational and speech therapy weekly.

Now 28 months old and 20lbs Casper is a shining star and has proven to be more of a fighter than anyone I know. He is proof that miracles happen and we feel so extremely blessed to have been chosen as his parents.

Casper LOVES Star Trek and Pandas. These are truly his 2 LOVES, they are the only things that he has really connected with. His love of Star Trek started just over 1.5 years ago when one 5am feed morning Daddy put it on on Netflix and ever since then it has been the ONLY thing that calms him down. We are in NO WAY "Trekkies" so we find it hilarious that he would connect so much with it.

Pandas began over the Christmas break when we decided one day to take the kids to the ZOO. The Toronto zoo had recently gotten 2 Giant Pandas from China and Casper LOVED them. All of a sudden while we were watching them he started motioning toward them and yelling. He now carries around a small stuffed Panda we got him EVERYWHERE and LOVES watching the pandas online. He also LOVES the Small World ride stuffed Panda that we got him one day after a visit to his Hematologist/Oncologist from the Disney Store so we have been watching videos of the Small World Ride and he LOVES that too.


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He is known as BOO in our house and is often referred to as Baby Incredible like Jack Jack from the Incredibles by his brother and sister. He LOVES watching Star Wars and Mickey Mouse Clubhouse as well as Peter Pan.

[IMG]https://lh6.googleusercontent.com/x_njb-DvwGWpvP2bFEXuJKiHY-uyUgDQs_d5FSaLyuM=w940-h315-no

Needless to say we felt like our family really could use a getaway. We need some time that doesn't doctors and therapy and just some time to leave all of our worries behind and celebrate being a family and all that Casper and we have overcome. SO we decided on a spur of the moment to book a trip for August and that's how this trip began.

It's going to be a huge stretch financially for us but we have decided that it will be worth it and as a result we have decided to make it a longer trip knowing that it may be the only one we get also knowing that we may need some days to deal with sickness and various things that will make us wish we had extra days built in.

As you can see I LOVE taking pictures and love sharing them so be forewarned that this pre-trip and trip report WILL contain LOTS of pictures.

Next up our dining plans.

 

[dianemom2]

I can't wait to read more about your trip and your little fighter! Your family has had a lot to deal with in the past couple of years. This trip is going to be so much fun for you!

 

[Twice_as_Nice]

Our family LOVES to eat.

My husband is quite the baker and cook and I really love baking myself. I am vegan and Iggy leans toward vegan also, he can't have dairy because they are a trigger for his migraines.

Our daughter is an EXTREMELY picky eater but with work from OT she has done really well with at least TRYING new things even if it is a tiny little bit. Mostly though he sticks to tan things and loves her bread and cheese.

From our last trip our top 2 faves were Boma and 1900 Park Fare. I was pleasantly surprised that our kids enjoyed Boma so much but we frequently eat that style of food at home because my husband is of East Indian heritage.

So our dining line up right now is:

1900 Park Fare dinner
Be Our Guest dinner
Boma dinner
Akershus lunch
TRex dinner
Hollywood and Vine lunch
Coral Reef dinner
Kona breakfast
Mama Melrose dinner (Fantasmic Package)
Ohana breakfast
Garden Grill dinner

With counter service in there also obviously. Breakfast is really our #1 fave meal so we had to throw a couple in there. I am considering switching to Be Our Guest lunch instead of dinner just because I am not sure if the kids would like the food at dinner but I think they would like the experience so I can't decide.

TRex HAD to be in there because Iggy LOVES Dinosaurs and so does Asia.

The only repeats for us are 1900, Ohana for breakfast and Boma. We did Kona last trip but it was for dinner and was AWESOME. I can't forget the dessert I had there.

I'm still holding out hope for Free Dining to come out and include our dates just because it would be nice to save that money but either way we think the DDP is totally worth it.

 

[Twice_as_Nice]

Yesterday really couldn't have been a better day. Casper decided that Feb 22nd 2014, 14 years to the day since my husband and I started dating coincidentally, would be the day he took his first steps unassisted.

They were stiff and was maybe 2 steps but they were there and it was AMAZING AND EXCITING. Both my husband and I cried.

THEN if that wasn't enough we woke up to the news on Saturday that we have been EXTREMELY blessed to have been chosen by the INCREDIBLE women of the Big Give as a Big Give Family.

I am BLOWN away, to say that is an understatement, first we are not a wish family. Casper does not qualify for a WISH trip from the Canadian organization as he does not have the cognitive ability to ask for a wish, the Canadian organization requires this. Despite this the women of the BIG GIVE have decided that our trip is deserving of their wonderful, incredible, amazing, compassionate, gift of both time, love, thought and talent.

That they would even consider us means the world and is more than any mother could ever ask for. This gift of love brings tears to my eyes every time I think about it and I know will bring even more tears when my children open their gifts and get to experience the joy that come from them. I cannot WAIT to share these moments with you all.

We have always believed very strongly in the power of positive thoughts and prayers. Truly it was the support and positive thoughts from our family, friends, and even just communities we know that got us through the most difficult times and we truly believe that Casper is here today as a living miracle because of them. To think that these women will be thinking of our family, putting their time, talents and love into helping our trip be that little more special means that we have an abundance of positive energy flowing our way and is such a blessing in itself.

Our family also strongly believes in giving back. As I said in my intro the Ronald McDonald House that was connected to the hospital where Casper was in the NICU was under construction. To help the families they opened a family room in the hospital and it had food for families to use as well as living room type areas, movie nights etc. To help them and help give back we held a food drive while Casper was in the NICU and we also sold Casper buttons to donate the money to them.

These efforts were more than just giving back for us but that the time they were also a nice distraction and also a way of healing.

So I have accepted this enormous generosity on one condition, that when we arrive home they allow me to join them as a Big Give member and help other families who are taking trips by having a small part in them feeling special.

So this is a HUGE THANK YOU and LOTS OF LOVE to the Big Give ladies out there.

 

[Twice_as_Nice]

I can't wait to read more about your trip and your little fighter! Your family has had a lot to deal with in the past couple of years. This trip is going to be so much fun for you!

Thanks so much for posting Diane and following along. I was beginning to think I was talking to myself over here, which I don't mind doing but I do like a little chatter.

 

[Sorcerer Jody]

What a beautiful family you have! I love all the pictures - Casper is just precious. Such gorgeous smiles! I hope you have a magical time - planning is half the fun!

 

[dianemom2]

I am sure you will start to get more followers very soon!

How wonderful that you were able to do something to help other families while Casper was in the hospital! I am sure that the extra food there came in handy when people needed snacks or had late nights with sick little ones.

 

[saundedj]

What an awesome family! I hope you have a magical time.

 

[wiigirl]

Follwing along!

 

[Twice_as_Nice]

What a beautiful family you have! I love all the pictures - Casper is just precious. Such gorgeous smiles! I hope you have a magical time - planning is half the fun!

Thank you so much. I am really enjoying the planning. I think soon we will start family movie night and watch a Disney movie once a week to prepare.

I also want to plan some in room surprises for the kids and I have already started buying some little toys and distractions for the plane. Just small things to keep them busy.

I am sure you will start to get more followers very soon!

How wonderful that you were able to do something to help other families while Casper was in the hospital! I am sure that the extra food there came in handy when people needed snacks or had late nights with sick little ones.
Today 12:06 AM

I am sure we will get some more followers soon too, I only just started of course.

For sure the non perishables and random things that you just don't think of needing until you are in the hospital for weeks and months with your little one are invaluable. It was just so nice to have a place to go that was comfy and allowed you to get a break. It was also nice to have soup, toast, cereal, coffee and other things that you could eat for free and take a break from cafeteria food and having to buy everything. It gets so busy in the hospital that some times you just can't get away to get yourself something.

 

[Twice_as_Nice]

What an awesome family! I hope you have a magical time.

Awe thanks so much. I think it's nearly impossible to go to Disney and NOT have a magical time but we for SURE will.

Follwing along!

YAY another follower, thanks for joining us.

Woohoo I just learned to multi-quote.

 

[Twice_as_Nice]

There is something very important we need to discuss that I need help deciding on. Asia noticed in one of the guide books we got that babies can have their first hair cuts at the barber shop in Magic Kingdom and wants Casper to have his first ever hair cut at the kingdom.

Now Casper has never had his hair cut. I decided long ago that once anything on him started growing I wasn't doing anything to change that. I also think he will be super cute with long hair.

His hair is already pretty long but it's whispy and thin, he also has a flat spot on the back of his head so it almost looks like he has a mullet from the back. Come August I imagine his hair will be quite long SO the BIG question is do we get a little trim on our trip and have his FIRST hair cut be at WDW?

Will they do just a little trim? Do I have to book it before hand?

Here's his hair for you to see

WDYT

 

[hey_jude]

Hi Amy.

I'm joining in on the fun here!

Since you asked about the haircut, I put my 2 cents (Canadian that is) in...I think you should do it. It looks like great fun and he'll get mouse ears and certificate. From what I can see at http://allears.net/tp/mk/mk_barber.htm you don't need an appointment and I can't imagine that they would cut any more (or less) than you asked them to do!

I'm looking forward to reading more about your trip plans.

Judy

 

[Twice_as_Nice]

Hi Amy.

I'm joining in on the fun here!

Since you asked about the haircut, I put my 2 cents (Canadian that is) in...I think you should do it. It looks like great fun and he'll get mouse ears and certificate. From what I can see at http://allears.net/tp/mk/mk_barber.htm you don't need an appointment and I can't imagine that they would cut any more (or less) than you asked them to do!

I'm looking forward to reading more about your trip plans.

Judy

Welcome Judy thanks for joining our fun.

That link is perfect thank you. I think I will do it if for nothing else other than his big sister will thoroughly enjoy it. I am sure Casper will also.

We've experienced some BAD high cuts here. LOL which is why I was a little hesitant but I've always been a strong believer in "it's just hair and will grow back" so why not right.

 

[tinkbell13]

Joining in! I am sure you will have a magical time!

 

[blueangel2]

Hi...I'm following along!

As a mom of a special needs baby, I can totally understand how exciting it is when a child accomplishes even the smallest things. My dd was behind on everything and I made a huge deal out of it when she finally did something most mommies wouldn't even notice .

And I totally hear you on the not wanting to "cut" anything once it finally starts to grow. My MIL wants me to get my dd's ears pierced. Well despite the fact that an infection is not something that can expose her to, my thought is that after 4 surgeries, she already has enough holes in her body without me adding extra to her If there ever comes a time(and cardiologist okays it) that she wants them done then I will, until then they will stay as they are.

Cant wait to hear more!

 

[Twice_as_Nice]

Joining in! I am sure you will have a magical time!

Hi...I'm following along!

As a mom of a special needs baby, I can totally understand how exciting it is when a child accomplishes even the smallest things. My dd was behind on everything and I made a huge deal out of it when she finally did something most mommies wouldn't even notice .

And I totally hear you on the not wanting to "cut" anything once it finally starts to grow. My MIL wants me to get my dd's ears pierced. Well despite the fact that an infection is not something that can expose her to, my thought is that after 4 surgeries, she already has enough holes in her body without me adding extra to her If there ever comes a time(and cardiologist okays it) that she wants them done then I will, until then they will stay as they are.

Cant wait to hear more!

YAY new followers welcome, I am so excited to have someone to talk to.

For sure I think get her ears pierced when and if she wants to and only if her docs okay it. It is so hard for people to understand if they haven't experienced having a sick child just how much you have to take into consideration every little thing. Everyone knows our house as the house of sanitizer, LOL, we squirt you when you come in and you WILL be asked to do it again multiple times while you are here. That's just the way it is with a child who has MFD. They mean well though at least.

I'm thinking I should kind of plan out our days next, at least in the basic way. I have to learn all about the new Fast Pass system and figure out how to book our fast passes etc.

 

[Twice_as_Nice]

The kids are SO EXCITED they got home from school and I booked their appointment at the Pirate League.

Last trip Iggy did the pirate league and was totally shy but LOVED it, he got the skeleton looking pirate and spent the rest of our trip with what looked like black eyes.

Asia did the BBB and she really wanted to love it but she had difficulty with the crowded salon, it was crazy noisy in there, and then with all the bobby pins etc. So this year she wants to do the pirate league and be a "girl pirate" just like Iggy.

They LOVE doing things together so I am sure they will love this. Last trip I brought some outfits from home and I think I will do it again, they really aren't into the park costumes so now I am on a mission to find some luckily we have tons of time.

Iggy VERY BADLY wants Casper to do it also but I really don't think he should get the make up on and worry about it with his skin sensitivity and then possible germs plus the age is a 3 minimum and he will be a couple weeks away from being 3 on the trip. So I asked Iggy if we could just bring a costume from home for Casper and I would dress him up on the same day if that would be okay, he said YES of course and he seems just as excited about it.

So one more thing booked.

Tomorrow Casper has an EEG at our local hospital so I am hoping he can get a good nights rest and it goes well.