Give Kid's The World Village

What an amazing place!  This 70 acre story book resort was built just for wish kids. They house 150 families a week, I was able to connect with 3 other families from Seattle that were staying here at the same time as us.   Northwest Make-A-Wish's goal is to fulfill 280 wishes for children with life threatning illnesses this year, more than half of all their wish kids are sent to this resort.  This was a 3 and 5 year olds wonderland, so many magical things with them in mind.

Here are just some of our highlights..

~ Every morning the present fairy delivered special presents in our villa while we were out at the parks.  Board games, plush toys, backpacks, all souveneirs one might buy at the different theme parks.

~ An ice cream parlor that was open all day and specialized in ice cream for breakfast, serving banana splits, milkshakes, sundaes, ice cream cones, and toppings galore. If you could dream it they could make it!   Of course they had lots of other good meal options as well.

~ Beauty spa for little girls, specializing in manicures, makeup and airbrush tattoos.  Checkout the 80's blue eye shadow Molly picked out.

~ Character tuck-ins and authentic Disney characters to say good morning and greet us for breakfast.  Some favorites were Mickey, Minnie, Mary Poppins, Goofy, Pluto, Boots, Ronald McDonald dinner appearance and an encounter with a real sloth. 

~ Very magical activities that are a rite of passage as guests at the village.  Max was able to decorate a golden star with his name on it and place it in a computer where a star fairy magically placed in the rafters of the star tower over night and delivered an invitation to him while he was sleeping to let Max know where and how to find it.  He then went on an adventure to try to locate his star amongst tons of golden stars throughout the castle.  Max is forever welcome to visit the village to check on his star.  Very moving to see so many stars of little kids with life threatning illnesses.   Max also has a matching star to place on his ceiling to remind him of his stay.

~ More activites than one could do in a week.  Fishing, horseback riding, an amazing pool and waterpark, a huge playground, remote control boats, putt putt golf, arcade for little kids, a merry go round, train, and so much more...

~So many special touches: a golf cart that drives around to make sure you have enough warm cookies and lemonade every afternoon or breakfast delivered to your villa in the morning.   

~ Every day the park celebrated a different holiday of the year, with extravagent parties, food, and activities.  For example, one day they celebrated Christmas and each child got to sit on Santa's lap, get a very nice toy, enjoy a parade of christmas characters, decorating christmas cookies, christmas crafts, candy, etc..

~ Free tickets to any theme park or activity we could think to do in Florida.

~ A media center that would download our pictures every day and burn them on to cd's for us, and lend digital cameras or video cameras in case something happened to yours.  Although there were enough village photographers keeping up with us at all times snapping shots for us and delivered a cd of all our pictures at the end of our stay.

~Upon checkout our family was given a world passport that allows our family to visit theme parks, zoos, and museums all around the country for free for one year.  What a gift!

Lifetime of Memories...

How can we properly share with you a lifetime of memories? It was so hard to use cameras and video to capture all the excited looks, smiles, grins, squeals, shrieks, surprises and anticipation we experienced every day..   Every time you would ask the kids what their favorite experience was it would be what happened within the last five minutes, it was so hard to keep up and top what we had already experienced.

We will each try to highlight our top five memories from our trip, keep in mind if you are a friend of ours with a make-a-wish trip in your near future I encourage you to carefully consider whether to read on, we hate to spoil any magic or surprises, even though much of it was specifically tailored to our family I'm sure there will be some magic that will overlap.

To give you a brief overview here is a modified list of the parks and fun things we had the opportunity to experience-

Magic Kingdom, Animal Kingdom, Hollywood Studios, Epcot, Sea World, Typhoon Lagoon, Universal Studios, Islands of Adventure, Airboat Swamp Tour, Plenty of Pool time, Aquatica Waterpark, Shopping, Legoland, Downtown Disney and Boardwalk and all our time spent at the Give Kids The World Village.

Magic...

We truly are in the happiest place on earth.  Words cannot begin to describe everything we have had the opportunity to experience. Surprise after surprise....

Just a Few Magical Family Highlights:

~ Magical Royal lunch inside Cinderella's Castle with all of the princesses and a meet in greet with Cinderella herself.    Max was made a Prince for the day and we think he enjoyed this way more than the girls which was hard to top.  He had princesses doting all over him and ended up with a face full of lipstick smooches.  The chef prepared an extravagent dessert specialized for each kid that they got to help decorate. Priceless smiles and an unforgettable meal!

~Royal treatment at every opportunity, front of every ride, priority seating for everything, special attention from every cast member.

~Parades! Even better than being in the parade is to have VIP seating for every parade and have every character greet you and make you the star of the parade.


~Special meet and greets with every character the kids can think of.


~Access to special air-conditioned plush private lounges with refreshments for downtime. 




~They cleared Pixie Hollow for us today so the kids could have alone time with Tinkerbell herself and her fellow fairy. They were sprinkled with her very own pixie dust and got to try out their fast fairy wings.

One of the magical gifts we received was a free unlimited disney photo pass. Disney photographers know we are a wish family and make us feel like celebrities with tons of pictures at every magical moment. Simply priceless!! It's hard enough to take in all the magic and help the kids process it, and keep your own emotions under control. Problem is we don't get all the pictures til the end of our trip. So you are going to have to wait for the good ones!  

I think they managed to make all of our wishes come true in one day! 
We are completely humbled by it all, so much fun!

Let The Memories Begin...

We were picked up at 6am and delivered us to the airport where we were greeted by our make-a-wish volunteers and a special TSA agent who was assigned to escort us through the airport to avoid all lines and help with all our medications and kid stuff.  What a gift!  We were then delivered to the alaska boardroom where they threw us a pancake party and they presented Max with a back pack full of Alaska goodies. The Disney airplane pin and Alaska airplane lego set was his favorite.

 We were then escorted to our gate and promptly walked on the plane as the first guests.  The pilot welcomed the plane and let everyone know that they had a special co-pilot named Max helping today.  Max was so excited to visit the cockpit and "drive" the plane!

God answered a lot of prayers today for our flight. Within 5 minutes of takeoff I had three sleeping children at 9 am!   Mom got to finish a book without any distractions - My wish come true!  The rest of the flight went so well and we were treated like royalty at every opportunity.  We arrived to all our family and a resort volunteer to greet us at the gate, we made it to our resort and I'm afraid the kids are not going to want to leave. We could easily spend a week just at the resort itself. The kids arrived to yet another party, with cotton candy, face painting, balloons, and lots of activities to welcome them to the park. While the kids enjoyed the party Mom and Dad had lots of checking in and orientations to go through to help guide us through the rest of the magic for the week!

Stay tuned...

1 day to go!

After three days of neuropsych testing and numerous dr appts and wrapping up of many other committments, Max has been getting through the week knowing that he has exciting things to look forward to.  Tonight the kids got wands and bead necklaces and a gold medal. 

I am sure to remind us of all the magic we have to look forward to.

2 days to go!

Molly sniffed out today's surprise - special lollipops for the airplane!

3 days to go!

Today's surprise ~ Tinkerbell, Princess, and Cars Tattoos!

4 days to go!

Today's surpirse was cool Tinkerbell and Princess stick on earrings and rings for the girls and Lightening McQueen racing bands for Max.  Our backpacks our stocked full of surprises now, Mommy is having a hard time keeping them hidden since they aren't allowed to play with anything until our flight.

Anticipation is building!

5 days to go!

Today's surprise was gummy Cars, Princesses, and Dora's!

6 days to go!

Today's Make-A-Wish countdown surprise was disney stickers in all their favorite characters.  Mom and Dad got woken up pretty early this morning with very excited kids reminding us that we had a gift to open and only 6 days left!!

7 days to go!

The big countdown begins! Only 7 days to go.  Here is the adorable countdown board that Janine our Make-A-Wish Volunteer made for us to help the kids understand how long until we leave.  Each day the kids get to open a package. If you can believe it we have twins that will wake up every morning wondering if today is the big day.   7 days in there minds feel like an eternity but hopefully a visual reminder will help all of us control our excitement. 

Make-A-Wish Sendoff Party!

Only one week to go! Make-A-Wish and Red Robin joined
forces tonight to help us get excited and send the family off in style with a great dinner party.

With customized backpacks filled with toys and goodies for our plane ride awaiting us as we arrived. We were quickly greeted by lots of pictures and staff of Red Robin presenting Max with his own staff hat filled with pins and his own name badge and a Red Robin super hero cape, Red also made a grand appearance to top it off!   Max had no idea what to think with so much excitement all around him.  We enjoyed a yummy cake and were presented with a large framed picture of our party and a photo album filled with pictures of our evening courtesy of Red Robin. 

 We had a great meal with our Make-A-Wish volunteers as we got to discuss all our last minute details, I have a feeling we are in for some exciting surprises ahead!



Couldn't fit all the balloons in our car, although it didn't seem to bother the kids. =)

Are you as excited as we are? 
Stay tuned for the countdown!

Weight Gain!

Check out this little belly that has developed!   I don't know many that get excited to gain weight but we are!  In the last month since we have finished the last round of chemo Max has been able to gain a whole kilogram!!    No height yet, but a little progress is very exciting.   We were able to finally get Max's supplements covered by insurance within the last couple weeks and the dietician had bumped him up 3-4 boost or pediasures every day.  Luckily he enjoys them and we even found a brand that comes in a little juice box that makes it easier for him to drink when we are away from home.  They were costing us about about $2 a piece before and now that we were able to get our insurance on board our new company is charging our insurance $550 a month just for his drinks. Since he has had a failure to thrive diagnosis for over a year now it was easier for us to prove to insurance that is was better for them to cover the supplements instead of having to cover G-Tube supplies. Turns out Max needs massive amounts of calories to make any progress in maintaining or gaining weight.  We are up to about 3000 calories day in order to make any movement. This is great news and gets us even farther way from our tube cut off. Woohoo!

May Infusion - IVIG

May's infusion started out a little shaky after we got our labs drawn  and his port was accessed for the infusion we somehow lost the little cap that keeps germs and bacteria from directly accessing his blood stream.  I have no idea how we lost it or for how long it was off, but the hem/onc staff was pretty concerned about this.  They became even more careful to watch for fevers today.  We would appreciate your prayers that there was no germs that made its way into his little body during the time the cap was left off.  They do such a good job sanitizing everything in the hem/onc unit but who knows what kind of bug could be lurking around the hospital.
We got to have our favorite male nurse, Aaron, today and between Aaron and the Oncology pharmacist we were able to come up with a rate that minimized the nausea, yet got us finished within 7 hours.   As soon as the meds got turned on it was hard to get a smile from him, but luckily his cool new semi truck/matchbox car racer kept him busy most of the day and provided much excitement amidst a yucky infusion.

We learned recently that there is a national shortage of the IVIG drug that Max has used. The hospital has made the decision to switch brands and hopefully this won't affect us, but obviously the hospital is trying to be diligent in their supply and making sure it is reserved for the worst cases. We are discussing the possibility of weaning him off of the IVIG soon (after discussion and sign off with all our team members).  We are a little nervous to do any more weaning when we have so many other fluxuating drugs in play and this has been the most consistent drug offering the least amount of long term side effects. Obviously if Max catches a virus or is in contact with a nasty bug we will need to get in for an emergency dose, but usually the antibodies can last in his body for up to 2 months and since we have been getting every month it might be okay to stretch it out a little. We are awaiting comment from our Boston Doctor whose wife recently gave birth to twins, so we of all people are happy to give him a little time off.  =)

Stronger

In case you didn't catch this on the news last night or on facebook, here is an inspirational video by Chris, a Leukemia patient at Seattle Children's.  Here are just a few faces of the kids we get to run into in our adventures on the hem/onc floor at Seattle Children's,.. Several fun nurses too.

IEP's

For all those who have been praying specifically for our IEP negotiations, Thank you, and for those of you who have been praying generally for Max and our family Thank you!! Our prayers have been answered. 

We had an awesome meeting with a team of 10 school district evaluators, psychiatrists, therapists, etc.  At first a little overwhelming as we felt pretty outnumbered, but overall it turned out to be a really good meeting, the school district was soo generous in the IEP (individualized education plan) and was throwing services at us, we knew there was a few things we needed to specifically request and before we even had a chance they were offering the services.  I really appreciated the School District Director, before he met Max he said he really liked his strong name and said it sounded like a name that just might conquer the world someday and he wanted to be a part of that. They did lots of research and wrote extremely detailed reports to assist all the teams. They also built in  flexibility so we don't have to have lengthy IEP meetings or evaluations as Max's symptoms change.

Max was accepted into the school district's developmental preschool, which will have around 5 special needs kids and 5 normally developing kids.  They have also accepted Molly into the preschool as Max's buddy so they can keep an eye on both of them together, which will also help ease anxiety.   Depending on where Madison gets placed for kindegarten next year they may get to have to door to door bus service.  You can be praying that Madison gets placed in the same elementary school as Max and Molly.    We were able to rise to the top of the in-district transfer lottery since she will have 2 siblings attending the school, but the lottery is not held til mid May and they cannot promise a spot until 1-2 weeks before school actually starts....

Within two weeks of the final evaluation meeting we had a meeting with his new team for the next school year, we met his new preschool teacher, Miss Jessie, all her helpers and the OT, PT, and Speech team that will be keeping an eye on him as well as meeting with the District Nurse, who will write the medical plan for Max.  The kids loved getting to tour their classroom and school and cannot wait for school to start next year.

Thank You Birth to Three!

Max officially graduated from the School District's Birth to Three Therapy program this week. Josh and I didn't expect to be in such a sense of mourning following his graduation.  It really feels as if we will be losing several members of our family all at once.   They came to our house every week and joined our family life,  Max looked forward to their time together and would remind me and try to guess what would be in their bag of goodies.  He would eagerly greet them and be ready to get to work.  They taught us so much and helped Max progress so much in one year.  They will each forever be an integral part of Max's journey and completely irreplaceable.  We will all miss them!

Miss Michelle - Speech Therapy

Miss Liz - Occupational Therapy

Miss Meri - Physical Therapy

Madison's 5th Birthday

Happy Birthday to Madison!  We have one excited girl who is very ready to go to Kindegarten.   She is healthy, active and so much fun! There is always a party when she is around, she has become so independent and grown up this month and such a huge help to mom. She loves riding her bike, being active, playing legos or dolls, enjoys reading and swimming and doing art and crafts. She had a special day devoted to her at preschool and got to bring all her special things to share with her class, she told the class that she wanted to be a Doctor, Teacher and Mommy when she grows up so that she could make Max and Grandma feel better.