Big Brother

Eddie had his 6 month MRI and oncology visit last week.  We were lucky enough to have my mom and sister fly in to help us with this long day.  Unfortunately, our arrival time for the MRI was 10:00 a.m. and the oncology visit at 1:00 p.m. making this an incredibly long day (without food) for the little guy.  When we first jumped in the car to head to the hospital he already started asking for snacks :( We arrived at 10:00 a.m., only for Eddie to finally be taken back for his MRI around 1:45p.m.  They were totally behind schedule and Eddie was so HUNGRY!  We tried to keep him busy and distract him as much as possible.  He kept saying, "I just want my salad sandwich!"  Yes, he wanted a veggie sandwich from Subway.  Weird, I know.  The anesthesiologist rushed in and apologized for the very long wait and said she was ready to take him back.  Mike carried him back (it was his turn) and held him as they put the mask over his face to make him fall asleep.  As soon as Mike came back, we all ran down to the cafeteria to grab food for ourselves, and we got the boy his sandwich.  We were paged an hour later when he woke up in recovery.  He devoured his sandwich while still loopy from the anesthesia.  It was actually so funny, that we caught a bunch of nurses outside his door watching him stuff his face!  They were like, "Whoa, slow down there little man!"  He drank a whole can of apple juice and ate a cake pop from Starbucks too.  We were released and finally able to go up to the oncology clinic for his 2nd appt. of the day and it was 3:45pm.  Once we arrived in the clinic, Eddie was angry.  He wanted no parts of another check-up.  The nurse tried to take his blood pressure and temperature and she couldn't.  He was kicking and screaming and we still had to hold him because he was still unsteady on his feet.  He was a mess.   There was no negotiating, or coaxing, he was done.  Finally, his oncologist arrived and told us that the MRI was good and his blood work was also good.  We were free to go and would do it again in 6 months.  We finally got home at 4:45p.m.  We were all exhausted.

We sat on the couch and put our feet up and debated where we would order pizza from for dinner.  The only problem was that Eddie doesn't really like pizza, and we felt badly having that for dinner after he had such a long day.  Eddie said, "Hey guys, lets go to Habeneros!"  We all laughed because Los Habeneros is a dive of a Mexican restaurant near our house that we like to go to, but it is surely Eddie's favorite restaurant! He loves the chips and cheese dip, and plus the place has a gum ball machine.  We pretty much bribe him and tell him that if he eats his dinner, he can get one quarter for the gum ball machine.  Eddie eats a good dinner, Mommy and Daddy get to have a beer or 2 (well not me anymore!) and Eddie gets his gum ball.  It's always a win, win!  An hour later we all piled back into the car and headed out for cheap Mexican food.  Once again, the boy, stuffed himself- chips and cheese dip, a taco, rice, beans, etc.  He sat next to Nicole and was playing with her, joking with her, and totally being a goofball.  He was laughing so hard I thought he was going to be.... sick.  A second later, he got the hiccups and then threw up. everything. all over his plate on the table.... We all looked at each other.... Seriously? Check please! Before we even finished wiping his nasty face he asked, "Can I still get a gum ball Mommy?"

After we put Eddie to bed that night, my mom, my sister, AND Mike, started bugging me about when we were going to share our special news, and by share, they all meant, a Facebook post.  I was waiting for Eddie's eye exam and MRI to be over with, and so now I had no excuses.  And so we finally shared the news..... Yes, we are expecting baby Johnson # 2!  I have been pretty nervous about everything and I would just like this pregnancy to keep on flying by, under the radar, that is.  I am being followed by my regular OB and a high risk doctor.  Because I had an incompetent cervix with the last pregnancy I had a cerclage placed at 13 weeks.  I also started weekly progesterone injections at 16 weeks.  I will continue to have these shots until 33 weeks.  Progesterone has been shown to prolong pregnancy for women who have previously had preterm labor. The goal is to get to 36/37 weeks and have a c-section.  My obviously weird and absurd goal is 25 weeks.  I would like to be 25 weeks along and still pregnant.  Then, hopefully, 30, then 32, then 34, and I guess we will see. I would like to see the 3rd trimester this time, that would be nice.  I am almost 21 weeks now and two weeks ago we had the anatomy scan.  Everything looked good and all of the measurements we right on track, and its a GIRL!  I am still in shock!  I am so used to firetrucks, tools, trains, etc. that I really don't know what I am in for now!  I mean, I literally wave every time we pass a garbage truck on the road! What is wrong with me?

We talked to Eddie's eye doctor here, Dr. Singh, and he will check the baby's eyes two weeks or so after the baby is born.  The baby does have a 5-10% chance of having the same genetic mutation that Eddie has that causes retinoblastoma.  Again, Mike and I both tested negative for this gene mutation in our blood, so we are hopeful, so incredibly hopeful, that this baby will not have to endure all that Eddie has gone through.  We could have had an amniocentesis to see if the baby has the gene mutation, but we decided not to.  I am too nervous anyway, just about the pregnancy alone, that knowing if the baby had retinoblastoma or not wouldn't do anything for me anyway.  We are all in, and we are just going to take this one step at a time.  I would be absolutely sick if this baby does have retinoblastoma.  I think about it everyday.  But we decided to move forward, and here we are.

We told Eddie a few weeks ago.  Sweet Eddie did not take the news well.  He wasn't excited... He was pissed!  He said, "What?  I don't want any babies in this house!  I HATE babies!"  Ummmmm, what?  You hate babies?  Mike and I were like, uh... awkward. He also declared that he would like to name the baby.... Farty Pants.... Lovely.  Mike started praying for the baby with him during prayers each night, and I think he is starting to warm up to the big idea.  But he did ask me the other day, "Hey Mom, where are we gonna take the baby when we're done with it?"  I asked him what in the world he was talking about, like what did he mean when we are done with it.  And he said, "You know, when we want to get rid of it?"  Ummmmm?   I totally ignored him!! I didn't know what to say, I had to turned around and walk into the other room and laugh! He loves being a big helper, and so I know that will ease his worries.

We are overwhelmed with everyone's words of encouragement, love, and support.   I am sure some people must think we are absolutely crazy for trying this again.  We have a lot of little steps to cross but we are just going to have to be grateful for the journey.  I guess our little secret is out!!

 Eddie's Easter pictures

 He had so much fun.

 The photographer was so good, he was smiling away the whole time.

 He couldn't believe he was allowed to hold the bunnies!

 I thought the thing was going to jump off of his lap and make a run for it!

He is getting so big!

Before mass on Easter Sunday.

I told him to hurry up and finish his jelly beans before mass started (we arrived super early to get a seat) and he literally took about 17 jelly beans and stuffed them in his mouth!

Helping Daddy paint to get ready for the baby.

 Wearing his bike helmet, in the car, on the way to swimming lessons. Safety first.

Post MRI happy boy with a Subway sandwich!

 Soccer practice!

 I set up the sprinkler in the backyard a few days ago.  I ran in the house to grab something and came out to find him butt naked.

Having a fire, roasting marshmallows.

So excited to be at the dentist for a visit.  No cavities!

 My sweet Mother's Day gift that he made at school :)

 His "I have a secret face."

 He is only smiling in this picture because I told him his shirt says #1 Phillies!  At first I told him it said #1 Eddie and he said "That's not how you spell my name..." Duh, I am an idiot!

 And last but certainly not least, a giant slice in his forehead after he walked right into a parking meter.  We went out for ice cream and we were walking to the car, and BAM!  Poor little guy.  He was sobbing.  I took this picture and sent it to Mike at work to see if he thought we needed stitches and he told me to take him to the pediatrician.

They said no stitches, although it looks pretty bad.  He was so sad, he didn't even want his ice cream!
There's going to be a lovely bruise tomorrow!
Never a dull moment over here!

Is it Mother's Day yet?

2.5 Years Stable!

Michael and I have been talking about switching care from Dr. Shields at Will's Eye to Dr. Singh here at the Cleveland Clinic.  Why?  Well, for number of reasons, but one of the main reasons is, of course, insurance woes.  

We have been here in Cleveland for over 18 months now, and I have continued to travel with Eddie to Philadelphia for his eye exams under anesthesia.  We learned very quickly that our insurance provider didn't really like that.  Why?  Because Dr. Singh here at the Clinic treats retinoblastoma, too.  We have house staff insurance since Michael works at the Clinic, and so anything we have done at the Cleveland Clinic is pretty much covered.  It's great.  But if you venture out elsewhere, especially when it can be done here, you're out of luck.  Our insurance told us last year that they would no longer cover ANY of the cost with Dr. Shields at Will's Eye Institute.  

I was not ready to switch to someone else, and so we travelled up to Philly after we moved here.  He had his EUA and fortunately, all was well and stable with his eyes.  Then we returned to Cleveland and started to receive bills in the mail.  Bills from Shields, from the Will's Eye Hospital, and from the Anesthesia group.  The total was upwards of $6000  I couldn't believe it.  He was in and out of the OR in less than an hour.  How could this be so expensive?  But those are the costs when you don't have insurance covering your back.  Call me crazy, but I was still torn. We started with Shields, we knew her, she knew Eddie's whole history, and I didn't want another pair of hands working on his eyes. Besides, this was not Shields' fault or issue.  This was purely an insurance, or lack there of, issue.  We received another 6 month pass from Shields, and so we had 6 more months to think about this.  

I was freaking out.  His next EUA was scheduled for October 1, 2014.  It was going to take place right before his Make-A-Wish trip and I didn't want to switch again.  I wanted to stay the course.  Michael thought this was nuts and he was really hoping I would change my mind, but I didn't  Yes, I knew it was insane, but I kept telling myself it was worth it for the good news. We decided to pack up again for an EUA in Philly.  The day before we left, we received a phone call from Will's Eye billing department saying that this time, since insurance is officially not working with us, we have to pay up front, before the procedure.  The lady said his name would not be on the schedule unless we paid now over the phone.  Literally it was September 30th, we are dropping the dog off at the kennel, throwing suitcases in the trunk, preparing to drive 6 hours across the state of PA and we are charging almost $6,000 on our credit card to make sure his name was on the surgery list.  

Fine, this was crazy.  The added stress of the money and bills did not help our already frazzled selves the day before his EUA.  But, the next day we received the news we wanted to hear.  Stable.  And we were off to Disney World for a worry free week of sunshine and fun.  Again, we had 6 more months to make a decision.

I pretended not to think about it, and whenever Michael brought it up, I quickly changed the subject.  As crazy as it sounds, I didn't want to switch.  You just get comfortable in your routine, and we had a routine at Will's Eye.  I had family support there and Eddie would get to spend a week at Grammy and Pop-Pop's house.  But, Mike brought up a really good point, bringing me to terms quickly.  It would be best to switch care to another doctor when Eddie is stable.  It would be terrible to switch care during bad times, bad news, perhaps, if the cancer started to come back or grow.  THAT would be extremely hard.  And, to be honest, how would we ever be able to afford active treatment at Will's Eye when we can barely afford his EUA when he is stable and receives no treatment at all.  Those bills would be astronomical. 

So we made an appointment for an in office visit with Dr. Singh.  We told him about Eddie's medical history and the issues we were facing and he wanted to know, "Do you want to do the EUA next week?  Pick a Friday and let's just do it, and get it over with."  And so, Eddie Spaghetti had his first EUA here at the Cleveland Clinic with Dr. Singh yesterday March 6th.  And, after all of the worries and overthinking and stressing about everything, his eyes were stable and we have received another 6 month pass!  Eddie's retinoblastoma has now been stable for 2.5 years!

I am incredibly grateful for Dr. Shields and the journey we have had with her thus far.  I am also incredibly grateful for Dr. Singh and his ability to reason with me and give me enough confidence to make the switch.  I obviously know that if the cancer comes back, it will come back, regardless of the doctor.  I also know that these insurance issues are just another part of life.  As much as fighting cancer is a noble cause, it is also a business.  I called Will's Eye and was able to talk to Dr. Lally, who works with Dr. Shields and was sure to pass on our news of our switching care.  She assured me that they totally understand, and that they would be there for us whenever, if, we needed them.  

For the first time in 3 years, Eddie and I can visit Grammy and Pop-Pop's house without having an EUA hanging over our heads.  And, for the first time in 3 years, we are receiving medical care that is fully covered by insurance..... holy cow!

Happy 4th Birthday Eddie Spaghetti!

Edward's 4 Year Stats

Weight: He is about 30 lbs 
Height: and almost 38 inches tall
(Instead of saying "Reach for the stars!" I am actually saying "Reach for the growth chart, and hang on!")  We are not exactly "killing it" in the height or weight department, but he is making progress.  After being 1 lb 12 ounces at birth, and then going through chemo a year later, I can't expect him to be a giant.  He is my skinny-mini!


Clothes Size:  3T-4T (He is in the in-between stage where most 3T clothes are looking a little snug and short (okay fine, they are not snug by any means, but they are getting short), and the 4T clothes are looking a little big and long).  His pants, however, would immediately fall down if I didn't buy the pants with resizable waistbands!  I would like to personally thank whoever came up with that idea.  Those secret buttons are priceless!

Drinking: Still whole milk, but now sometimes he likes to have strawberry milk or chocolate milk, sometimes that is..... he also likes orange juice and gatorade (he has been sick a lot this winter, and so we purchased a lot of gatorade)

Foods: His personal favorites: cucumbers, tomatoes, carrots, cherry tomatoes, celery, green peppers, apples, clementines, bananas, blueberries, strawberries, cantaloupe, spinach, green beans, corn, etc.  This kid loves his fruits and vegetables so much that we have to deliberately give him protein and fats because otherwise, he would always ask for these...As for snacks, popcorn, popcorn, and more popcorn.... this is definitely his favorite snack, which is funny to me, because I hate popcorn.  Oh, and watermelon.  He could eat 4-5 slices of watermelon in one sitting, and still ask for more.  For dinner, he eats what we eat.  He says that he doesn't like cheese, and if I ever make him a sandwich and try to sneak a slice of cheese on there, he will quickly find it and tear it off.  Who doesn't like cheese??

Class Clown:  There isn't a day that goes by that without Eddie saying, "Is that funny Mom?"  He wants to be funny. all. the. time. This boy really loves an audience.  At his most recent conference at school, I was panicking and I asked the teacher a range of questions: Is he a good boy?  Does he follow directions? Does he fight with kids? Does he kick or hit anyone? She kind of laughed at me and said that he is an easy-going kid, and that his only little struggle is during group time, as he struggles to pay attention, because he is usually too busy trying to crack up the person next to him. She said, "Eddie is very........ social!"  Haha!  She said, "I don't know if it is your personality, or maybe dad's, but he really is all about making people laugh."  Hmmm.  I would say it is a little bit of the both of us!  If you would ask Michael, he would say that he was an angel in school.  I, however, had quite a bit of fun back in my school days and I managed to get into a little bit of trouble, and so, as my own mom has already said to me, "the apple doesn't fall far from the tree."

Imagination: Edward has quite the imagination.  He loves to pretend to be a repair man.  What do I mean by that?  Well, he likes to put his tool belt around his waist and he likes to carry his tool box around the house and constantly ask me, "Do you need me to fix something, Mom?" And he will not accept 'no' for an answer.  Sometimes, I say that we have leaky pipes under the sink.  He empties out the bottom cabinets of all of the cleaning supplies, lays on his back with his headlamp shining in the dark, and "fixes" the problem with his pretend wrenches, screwdrivers, hammers, and nails.  If he is not playing the repair man, he is busy pretending to be a police officer or a firefighter. He loves to play with his walkie-talkies with Mike.  They go back and forth saying things like, "Help! There is a fire!" or "Whats your ETA?  I need back up!"   And lastly, he loves to pretend to be a restaurant waiter.  He runs around with paper and a pen asking us what we would like to eat.  When my mom and dad took Eddie out to dinner last month here in Cleveland, my mom told the waitress that he loves to play restaurant at home and she asked if she could tear off a few pieces of paper from her restaurant pad for Eddie.  She did something even better.  She went and retrieved a brand new waiter/waitress notepad and told Eddie he could have it!  Well, we haven't stopped ordering food and drinks from our handsome waiter.  And playing restaurants has been so cute, until lately.... when he started asking us for money! He said, "Dad you have to pay for your food!"  He is too funny. 

Accomplishments: Eddie is really loving his swim lessons at Goldfish Swim School and he is really making progress.  He currently takes lessons once a week, and he is always so excited to go.  He also loves his Little Gym class where he can jump, roll, and flip around.  He had his birthday party at Little Gym last Sunday and he had a blast.  We had a firefighter theme and invited his nursery school class and some close friends and family.  And last week was his "Special Day" at nursery school.  Both Mike and I were able to go and spend the day with him and make a fun snack for all of his classmates.  I asked Eddie what we should make for snack and he said, "Ummmmmm, pizza bagels I think!"  He told me they were delicious and yummy and I told him he never even had a pizza bagel.  I also reminded him that he doesn't like cheese, and he often says he doesn't even like pizza. He absolutely insisted that we make pizza bagels, and so we ran to the store to buy mini bagels, sauce, mozzarella cheese, green peppers and pepperoni.  The kids in his class were delighted with our snack choice.  They devoured their pizza bagels.  Well, all of the kids ate their snack except Eddie, who took one bite, and said he didn't like it. Weird.  Ah, I can't believe our tiny little micro-preemie is already four!

Upcoming appointments: Edward has his 4 year well visit on Wednesday the 28th.  I am pretty much dreading that appointment.  He has really taken a turn on doctors in general. I think he is officially angry and tired of having so many doctors appointments.  It hasn't helped that he came down with a bug/illness every few weeks this winter.  The last doctor's appointment was only an ear check, and he absolutely flipped out and was screaming, crying, throwing himself on the floor, telling the doctor to get away from him.... Needless to say this 4 year well check-up is not going to be a walk in the park considering he needs some shots :( Then he has an eye check up the next day with Dr. Marcotty.  Eye drops, dilation, tests, the whole nine yards.  It will be a rough two days next week,  that's for sure, but as long as we receive good news, we will be okay.  

Pictures

 Some of my favorite pictures with Lindsay his NICU nurse and one of my best friends.

 Eddie rocking his big boy haircut!

Eddie and Michael, best buddies!

My grocery store partner....

My flowers!  Eddie's class made vases for their parents before Thanksgiving and the teachers filled them with beautiful hydrangeas.  But Edward was sick and missed the last 2 days before Thanksgiving break, so I got my flowers the Monday AFTER Thanksgiving.  Can you tell?  Haha!  It was so sweet he was still so excited to give me the flowers- totally oblivious that they were dead.

We went to Disney's Frozen on Ice. Hey Sven!

Eddie playing with his $22 light up sword. worth it.

Meeting Anna and Elsa.  Someone was totally star struck!

"Shaving" like Daddy with the shaving kit Santa brought him!

Eddie's school picture... I mean, I can't even believe he smiled so nice.  I might order a million of these!

Fire truck cupcakes for his birthday party!  Pinterest WIN!

Hanging out with his buddy Bryan.

Total goofballs!  Firefighter party success!

4 years later, and he is still jumping the gun!!!!!!  Little stinker blew out his candle before we finished singing, and of course, he thought that was so funny!  After the party I asked him if he had fun.  He said, "I did Mom.  I had so much fun.  I was waiting for that party.  I was waiting for that party for my whole life!"

XoXo,
Katie 

Make-A-Wish trip to Disney World

After we all recovered from Eddie's eye exam, it was time to celebrate!  My mom threw a Make-A-Wish send off party for Eddie and invited all of our family!  Finally, we were going to Disney World!

 The awesome decorations planned by my mom!

Eddie was a little confused about the Mickey Mouse cupcakes and he kept asking if it was his birthday because everyone kept giving him presents! Haha! So we sang Happy Birthday (to my Dad) and let Edward blow out a candle!

                        All of our family came wearing their Eddie shirts!  What a cool surprise!

Eddie, still thinking it is his birthday :) No buddy, this is your Disney send off!  

I would like to especially thank my parents for having everyone over to celebrate with us.  It was such a nice night.  Eddie was again, spoiled rotten with Mickey Mouse slippers, all sorts of new Disney pajamas, Mickey underwear, Mickey t-shirts, Mickey blankets, Cars characters, books, stickers, markers, candy, spending money, and one too many stuffed animals :) THANK YOU! I thought that we received enough Disney paraphernalia that night that we wouldn't have to buy anything in Disney World.... but anyone who has been to Disney World knows that is simply not the case!  A Mom can dream, right?

Before I even get into the details I have to say that the Make-A-Wish foundation is seriously amazing and our week was a first class, one of a kind trip. Prior to our departure, I had no expectations.  I was just happy we were getting a chance to go away together as a family.  Other than visiting our parents/family members, or going to weddings, Michael and I have not been on a trip since our honeymoon.  But, I was blown away by the thorough thoughtfulness of everything involved from the time we were picked up, to the time we returned. They went over the top.  Every little detail was taken care of for us. It is truly unbelievable what they can do for families and what they accomplish. 

Day 1: Monday, October 6th- Travelling, Naps, Halloween Nights at GKTW

We were picked up by a limo, at 6:30 a.m.  Eddie thought the limo was so cool because the dimmed lights kept changing different colors.  He would NOT sit still and kept falling off of the seats every time the limo changed lanes or made a turn.  When we arrived at the airport, a ticketing lady from United met us outside and brought us right up front to the desk, gave us our tickets and gave Eddie a goodie bag full of lollipops, fruit snacks, animal crackers, and a Lightning McQueen car.  She said,  "Eddie I heard you like cars."  She then motioned for this TSA guy to come over and he said, "Hey, where is Eddie?  I need a high-five!" We followed this big man who took us right to the front of a very long line for security and whisked us right through.  All of the security workers were saying hello to Eddie and once we all made it through security they gave him another bag full of presents (4 Hot Wheels cars, a coloring book, and crayons).  Mike and I looked at each other like, "Is this going to keep happening?" And yes, it kept happening the entire week. 

 In the United Club Eating breakfast and watching Disney Junior!

 Milk and chocolate donuts!

 Eddie loved his Lightning McQueen suitcase that Aunt Nicole gave him and he insisted on rolling it himself.  He also packed it himself.  It was full of toys, which, we obviously didn't need to bring.

The pilot presenting Eddie with real pilot wings!

How neat!

Playing in the cockpit before everyone boarded!

Eddie loving being in the pilot's seat!

Finally we are taking off.... soon to be landing in Orlando!

We arrived at Give Kids the World!

Time to check in!

Welcome home for the week!

We unpacked our suitcases and we all took a nap. We were exhausted.

 We learned that Monday Night at Give Kids the World was Halloween Night.  I packed Eddie's firefighter costume knowing they did this.  He was so excited.  GKTW had trick-or-treating, face painting, music, games, a balloon artist, a fog machine, and spooky decorations everywhere.  And all of the workers were dressed in different costumes.  It was so sweet!

 Eddie playing corn hole.

 Eddie and Daddy in front of the giant black cat!

Fog Machine + 3 year old firefighter = endless fun

 He kept saying, "Mommy why is there smoke here? I have to put out that fire!"

 He couldn't get enough. We spent at least a half an hour just playing like this.

 Watching the balloon man.  He asked for a fire hose.  The balloon man said that was a first for him, but he would try! And you can see he had a fire hydrant painted on his face.

A firefighter at work!

Having fun :)

 The balloon man made a white hose that he twisted around Eddie's waist and the blue balloon was the water shooting out from the hose!  AND back to the fog machine he went to put out the fire.  Eddie was providing free entertainment for many people that night!  What a night for our first night in the village! The next morning we were off to Sea World!

Day 2: Tuesday, October 7th- Sea World, Swimming, Fishing

Sea World was such a cool place.  We saw tons of amazing animals.  We saw flamingos, penguins, baby alligators, whales, dolphins, sharks, and many many more.  Eddie rode his first roller coaster, the train, and other cute kiddie rides.  He got his face painted, petted some sting rays, watched the Shamu show, and even fed the dolphins.  Feeding the dolphins was unforgettable. Memories worth a lifetime.

Welcome to Sea World!

 Here is Eddie on the train at Sea World's kiddie section of rides! Mike went to get on the train with him, and he said, "No Daddy, I want to go on by myself.  I am the train master." Okay then, big boy...

 He loved the train!

 This was a fun area to climb up ropes, jump on nets, and go down many different slides.

 We lost count how many times he went down the slides!

 The Shamu show!

 This was awesome.

 Such graceful and huge animals.

 Thank goodness we were not in the splash zone.  Some people got soaked!

 So cool.

 Eddue loved it!  We all did actually.

 As we were leaving the show there were vendors everywhere selling all sorts of stuffed animals.  Eddie really really wanted this big whale.  $20 later.... totally worth it.

 Eddie speaking whale.

 We bought this whale around noon, and he carried it throughout the park for the next 4 hours... 

 In the shark exhibit!

Awww! Again he wanted to do it all by himself. Such a big boy. 

 The Antartica exhibit was so cool - literally, it was freezing in there!

 So many penguins!

 They are so cute!

Cheese! 

 Can't get enough of these little guys.

 Such quirky animals!

 Looking at the sea turtles.

 Feeding the dolphins...

 The.

coolest.

thing.

EVER!

 Oh hello there!

 so sweet....

 It was really amazing.

He absolutely loved it!

 This was so funny. Edward was exhausted. There was one more possible show to stay for but he wanted to go home.  We arrived at Sea World at 10:00 a.m. and it was already past 4 o'clock.  He kept saying he wanted to go home to GKTW and go swimming.  Apparently those directions are located on the Sea World Map.

 He is a total wiggle worm.

The fishing dock!

The fish we never caught!

Fishing with Daddy.

 Two happy boys :)

 We had no luck!

 The fish kept stealing our bait!  We gave up, stopped by the ice cream shop for Eddie's new nightly routine - a milkshake.

Day 3: Wednesday, October 8th- Magic Kingdom ALL DAY

We walked into a parade featuring Mickey, Minnie, Donald, Daisy, and Goofy.  Eddie was mesmerized!  We hit the ground running, and by that I mean we absolutely wore ourselves out that day!  With the fastpass we had, we went on 12 rides that day - it was incredible.  We rode the Race Cars (twice!), the Buzz Lightyear ride, Dumbo, Little Mermaid, It's a Small World, Peter Pan's Flight, Winnie the Pooh, Mickey's Philharmagic, The Haunted Mansion, the Jungle Cruise, the Pirates of the Carribean, is that 12 yet?  Ummm, we explored Tom Sawyer's play area island, I mean, I don't know if I can even remember everything we did.  The goal was to actually stay for fireworks that night, but around 6:30 p.m. we all decided enough was enough.  Regardless, it was a magical day.

Cheese!

 Buzz Lightyear ride!  It became one of his favorites!

 We got to shoot the bad guy with a laser gun!

 Buzz!

 So excited before we take off!

Woohoo!

 Dumbo!

 Look at those curls in the Florida heat! haha!

He kept waving to Mike every time we went around! 

He really loved Dumbo! So sweet!

Someone had a little crush on Ariel!

 Little Mermaid ride!

 Ahh! so many childhood memories! I love this ride!

 Eddie a little bit scared here seeing Captain Hook on the Peter Pan ride!

 It's a Small World

 The Race Cars!  Look who's driving!

After 9 hours in Magic Kingdom, we give up, we bought a 12 dollar balloon, we are going home!

Day 4: Mickey Mouse Meet and Greet at GKTW, Animal Kingdom, and Christmas Night at GKTW

Give Kids the World had characters coming to the campus all throughout the week.  We were sure to make time to meet Mickey Mouse.  Eddie was so excited and not scared at all.  He ran right across the stage into his arms.  It was so sweet.  After meeting Mickey, we grabbed breakfast and headed off to Animal Kingdom.  We had another long day in the park and the weather was very hot that day.  We rode many dinosaur rides, and played in the boneyard play area.  We rode on the African Safari and were able to see real giraffes and elephants up close.  We had front row seats to the live show of The Lion King.  Eddie loved the show, we all did!  Later that night Santa was at GKTW.  We waved to Santa but Eddie was too excited to wait in line to sit on his lap.  There were all sorts of games to play outside, plus more music and dancing, and even "snow."  Eddie kept saying, "Why is it Christmas?" We forgot our cameras that night, so no Christmas in the village pictures! Sorry!

 Meeting Mickey Mouse at GKTW!

 High Five!

 Knuckles

 Cheese!

 No better way to start our day!

 Yes!  We found Donald, his favorite!

 Eddie thinks Donald was so funny :)

But, he became so shy and would not smile or even look at Goofy. :( I think he was a little scared.

 On Daddy's shoulders!

 We had a stroller, but he preferred this :)

Day 5: Friday, October 10th: Hollywood Studios ALL DAY

Okay, so the first thing we did in Hollywood Studios was go and meet Lightning McQueen and Mater. Eddie is a huge Cars fan and seeing him stand with these guys just melted our hearts.  He loved them! We saw a Disney Junior Live show, and met Jake from the Neverland Pirates.  We then watched the Little Mermaid show, the live sing-a-long Frozen show, met Buzz and Woody, rode the Toy Story ride (twice), played in the Honey I Shrunk the kids play area,  and topped the day off with the Indiana Jones live stunt/explosion show.  Eddie loved every smoke-filled firey explosion, and I think Daddy did too :)

 Lightning McQeen and Mater!

 He was in his glory!

 His buddies!

 Cheese!

 Disney Junior Live show with Mickey Mouse Clubhouse characters, Sofia, Jake and the Neverland Pirates, and Doc McStuffins.

 Front row seats!

High five!

Jake!

 Honey I Shrunk the Kids play area.

 Cheese!

 Buzz and Woody, his new pals!

He loved meeting these guys!

This guy came out of no where and scared the crap out of Eddie! It was so funny!

Day 6: Saturday, October 11th: GKTW, naps, and Magic Kingdom one last time!

Eddie was asking and asking and asking to go swimming again and to play mini-golf again, so we decided to spend much of our last day at GKTW.  Eddie could have stayed here all week without leaving once, and he would have been happy.  We walked around GKTW doing different things all morning, came home to nap, then showered for one last night in Magic Kingdom.  We rode 6 more rides (Race Cars, Buzz Lightyear, Dumbo, Goofy's Rollercoaster, Peter Pan, and Pirates of the Carribean- can you tell I have a boy????) and then we camped out with ice cream and popcorn for the Mainstreet Electrical parade and Wishes fireworks.  It was a great last night!

 Our GKTW villa

 The view across the street.

The ice cream shop that was open all day long.  Eddie came here every night for a new flavored milkshake.  He really likes strawberry milkshakes the best!

 Julie's Safari Theater where we met Mickey Mouse. 

 The tower in the Castle of Miracles.  All of the stars have a name on them and each star represents all of the kids that have been to GKTW.

  Eddie pointing to his star.  It will now be there forever :) with over 100,000 other stars.  This was both sad and remarkable to me... some of these kids have since passed away.  Let this place provide hope forever.

 The magic pillow tree, where all kids get to make a magic healing pillow.

 Look at all of the stars.

 Truly, a remarkable sight.

 The magic wishing well.  Eddie threw many, many pennies in there.

Eddie loved this little slide.

 I really lost count of how many times he went down this slide.

 The knight guarding the castle.

 The Gingerbread House where we ate breakfast and dinner most days.

The Enchanted Carousel that we rode about 7 times.

 Daddy and Eddie on the turtle.

 Me on the reindeer (Eddie's choice for me).

 Eddie riding the pig!

 O'Elmer the sleeping tree.

 He actually snores as your walk by.

 It scared Eddie EVERY day! haha!

 Selfie because.......

 Katie's Kitchen offered grab and go lunch!

Touring the Gallery of Hope. 

 Finding our villa on the GKTW map.

GKTW 7 hole mini-golf! 

 This might have been his favorite activity.

 We golfed 4 times in one week!

 The course was full of interactive dinosaurs....

 that shot water at you, 

 or roared when you finished putting, 

 and it scared Eddie every time.

We had a blast every time.  Eddie has zero patience whatsoever, and so each 7-hole game lasted at most, 15 minutes!

 Every time!!!

 So fun!

 Amberville train station and arcade.  All of the games and rides here are free. We came here at least every other day.  It's kinda like a Chuck-E-Cheese inside.

 Shooting hoops with Daddy!

Again, Eddie wanted to sit in the front to be the train master... whatever that means... 

 Riding the GKTW train.

 The pool!  The weather was awesome!  High 80's every day.

 Me and my buddy!

 Ready,

Set, 

 

Jump!

 Daddy having some fun!

 He kept saying, "Throw me again!"

 We could have stayed there all day :)

 Hi Minnie!

 Clapping and waving to Goofy!

 Buzz Lightyear ride one last time!

 Cheese!

Dumbo one last time!

 Waiting for the Mainstreet Electrical parade to begin!

 Tinkerbell

 Minnie

 Mickey

 Cinderella

 Peter Pan and Captain Hook on their ship!

 And fireworks!

 Sitting on Daddy's shoulders for a better view!

And that's a wrap!

Day 7: Sunday, October 12th- Pack up, GKTW golf and games one last time, then off to the airport :(

Eddie did NOT want to leave.  He was very, very sad.  One lady asked him where he was from, and he said he was from Give Kids the World!  Haha! He absolutely loved that place!  But he keeps calling it "Kids Kids the World." We tried to explain it to him, not worth it.  He had the BEST time.  He was so incredibly happy every day. He loved every minute. What I love is that these memories are his forever.  

I have more photos if you can actually believe it, but this is a pretty good summary of our trip.  I cannot say enough how nice and accommodating everyone was from GKTW and Walt Disney World.  We were pretty much treated like celebrities.  Michael and I were joking that we can never EVER take Edward back, because we could never ever top this trip!

Gifts from GKTW: a giant Mickey Mouse stuffed animal, a mini-Mayor Clayton bunny stuffed animal, Candyland, Connect Four, Pirates of the Caribean DVD, a Transformer, Legos, a Sea World interactive telephone... and other things I am forgetting....

Things We Purchased For Edward in a Moment of Weakness: A Buzzlighter dart shooter, A BuzzLight Year Light up spinny thing (I don't even know), a giant Shamu (although I will justify that because he sleeps with it every night now), Lightning McQueen Mickey Mouse Ears, a light up Mickey glow stick, a pirate sword, a NASA remote control rocket (what?  I know.  That was Mike, ALL Mike.... it's not even d=Disney themed!!!!!!!!)  ummmm I think... I hope that's it....

THANK YOU Make-A-Wish.

THANK YOU Give Kids the World.

THANK YOU Aunt Annie.

BEST. TIME. EVER.

XoXo,
Katie, Mike, and Eddie Spaghetti

P.S. If ANYONE buys Eddie a toy for Christmas, it will be donated to the local children's hospital.