Charleston Beach Week 2013

A girls trip!  NO boyfriends, NO husbands, just 8 girls...... and Eddie!  That's right, Eddie experienced his 1st spring break of his life, and it was fabulous for him AND me!  Suddenly, the night before we were supposed to leave I found myself really nervous and wanting to back out last minute.  Of course Michael taledk some sense into me.  He said, "Kate, you ARE going away with SEVEN nicu nurses... I think you'll be okay." I agreed and excitedly packed every outfit Eddie owned. And I am so incredibly glad we went. He was the center of attention all day, everyday.  He now has seven girlfriends!  Haha!  We stayed at the Wild Dunes resort in an awesome condo close to the pool and beach. We visited the Charleston Aquarium, played at pool, splashed in the waves, built sand castles, went on bike rides at sunset, and ate ice cream every night.  On the last night, all of the girls went out to a fancy dinner in downtown Charleston, but Eddie and I stayed behind to have a date night ourselves, and to let the girls have a stress free dinner.  He was so upset that he cried for 15 minutes when they left. He stood hopelessly at the window saying in the most pathetic voice,  "Girls, where are you?"  Check out some pictures of our amazing trip! I apologize, the pictures are not in chronological order.

Oh, and by the way, Eddie is doing great.  We have out next EUA at Wills Eye on May 8th.  As you can tell Eddie does not have his glasses on in any of these pictures... yes, we took a little break on vacation (bad move, Mama, bad move) and now we are trying to get back into our glasses wearing routine.... Eddie has been very stubborn, and protests the wearing of his glasses, but I am practicing the art of toddler bribery and making progress each day.

Beautiful weather, beautiful waters

The Charleston Aquarium

Sooo pretty!

Edward and his girls!  

Cooling off

Lindsay and Ashley

Palmetto trees

Cooper River Bridge

Brunch at Eli's Kitchen! Would be an awesome picture if Eddie had his eyes OPEN!

One fish, two fish, red fish, blue fish!

Albino alligator..... very cool!

The beach!

Meghan and Sara.

Walking along the pier.

Lizards

Baby clams....... and I probably shouldn't tell anyone else this story, but Eddie ATE one... yep, put it in his mouth, crunched it with his teeth, swallowed, opened his mouth, stuck out his tongue, and said, "All done Mommy."  Grossed. Me. Out. 

Taylor, Ashley, Sarah, Danielle, Lindsay, and me

Horseshoe

Splashing in the fountain!

NO more Eddie, it's too cold! Followed by tantrum, followed by running back into the ocean, and falling over, head first into the water, drenched....

Jellyfish!

Meghan, Danielle, Lindsay, and Sarah hanging out around the fountain!

Look Eddie! A shark!

Lemurs

Sea Otters are the most graceful swimmers!  Eddie was giggling and giggling as they flipped about!

Turtles

Eddie's facial expression here cracks me up!  He is saying, "Seriously, why did you dress me up in this?"

FREEZING OCEAN

Driving the safari jeep.

Flipped head first into that boat as soon as he got into the play area.  Maniac!

Me and my love!

5 dollar croakies for Eddie. Worth it. 

More fish!

Holding a star fish!

We are gonna miss Lindsay when we move :(

Not so excited about having to wear the helmet. Sorry bud, you have to.

Riding on the back of Lindsay's bike on the beach!

Absolutely no fear!  Petting a snake! This child definitely causes heart palpitations!

Me, Eddie, Lindsay and Ashley

The Cooper River Bridge

Passed OUT after our aquarium trip!

So funny!  He is such a peanut!

A water bug!

The pool is still freezing... but Eddie didn't care. He played for hours!

Eddie and Lindsay on our deck

Ready for the beach at 9 a.m.

Do you think we had fun??????

March 1, 2012..... "There is no easy way to say this, but, what I am seeing in his eye, is a tumor." Dr. Christian Carter, Pediatric Ophthalmologist

March 1, 2013..... ONE YEAR LATER

Edward: "Pooping."
Me: "You're pooping?"
Edward: "Yeah."
Me: "Okay bud."
Edward: "Bye-bye Mama."

Soooooooooooooo Edward is thriving, or at least he has been, until this week, when diarrhea took over and is destroying our lives... haha, jk, just ruining some of our routines.  I took little man to the pediatrician and it looks as if Edward has the infamous GI bug going around, or Hand Foot and Mouth!  Two, great, wonderful, NORMAL, toddler illnesses!!!!!  We are NOT in the hospital.  We are NOT on isolation.  We are at home, hanging out, being icky sicky....I have to say..... changing a poopie diaper... not so bad.... changing an explosive diarrhea diaper... holy shit... no really, HOLY SHIT!  We have dumped Eddie into the bath tub more often that usual this week, because it has been that bad.  Otherwise, we are still having fun, being a boy, digging in the backyard, going on play dates, going to the playground, going to the library for story time (not at all our best moment), walking Winston around the block, testing Mommy to wits end, repeating everything he hears, playing with his toys using an incredible imagination, and sleeping though the night (most nights!).

Edward, you are an absolute inspiration to us every day to be a better person, a better mother, a better father, a better friend, sister, brother, neighbor, etc.  The last 2 years have been, well, ridiculous! We have some terrible memories of tearful, fearful and rock bottom moments, but we have also had hilarious, stomach hurting, laugh until you cry happy tears moments, and because of this..... I guess..... we will keep you :)

You ARE the best thing that ever happened to us.
Love Always,
Mama and Daddy
(Or as you have recently named us "Kate" and "Johnson")

I made this video so last minute and so I apologize if some awesome pictures of friends and family  were left out, or if the music is a little off. I know you people are like, "Enough already and your videos of your kid!" haha, but I couldn't resist.  At least this video is only 7 minutes long.  I can't believe the video I made for his 1st birthday was 14 minutes long, I mean, what was I thinking?  Crazy Mom here!

I would like to thank everyone who has helped out and supported us throughout this year.  Thank you for proudly wearing your Retinoblastoma shirt and spreading awareness about this rare cancer! Thank you to Nell Ryan for organizing the Notre Dame Game Watch for Eddie in the fall.  Thank you Nicole Schuster and the BC field hockey girls for organizing several events for Edward.  Thank you Emily Gimpel and the Junior Golf Clubs Cancer for having an amazing golf outing in August at Whitemarsh Valley Country Club.  What a success!  Thank you Jenny Franks for bringing Eddie into the Matthew Mullin Foundation's Ugly Sweater Party.  We are honored to have been included in Matt's memory.
Thank you to everyone who attended these events, and others, for the little guy! Also, a huge thank you to our parents for their unwavering support.  I would like to especially thank my Mom, Joan Schuster for driving us to Will's Eye for every single appointment, and waiting with me to hear the results from Dr. Shields.  Thank you for being there for me.  Thank you to our brothers and sisters, aunts and uncles who constantly check in on us and spoil Eddie like he is a king! Thank you to everyone who has sent cards, care packages, gifts, food, and money to help ease the difficulties of caring for a sick child.  Thank you for great friends, friends who flew/drove long distances to Charlottesville just to visit with us, or nearby friends who have texted my husband behind my back to arrange for me to go out to dinner or to the movies with the girls.  Each of you have left an imprint on our hearts.

 

Happy 2nd Birthday.... and Edward's 1st Real Snow Day!

Edward's 2nd Year Report Card 

Weight: 21 lbs 13 ounces 
Height: 31 and 1/8 inches
Clothes Size: 18-24 months!
Diaper Size: 4
Teeth: 12 and more coming in! And he loves brushing his teeth with his Elmo toothbrush!
Daily Medicines: Bactrim Mondays and Tuesdays post chemo until March 1st....
Formula: GONE!
Bottles: No more!  Whole milk in a sippy cup!
Foods: for breakfast he will eat oatmeal, Frosted Mini-Wheats, ( I know, weird, right?) Cheerios, granola bars, eggs with cheese, bacon, yogurt, strawberries, blueberries, bananas..... for lunch he likes turkey and cheese slices, goldfish crackers, pickles, cucumbers, avocado, apples, mac-n- cheese, grilled cheese, peanut butter and jelly, and for dinner he usually just eats whatever we are having for dinner, whether it is spaghetti and meatballs or burritos!  AND he always, always, always has ice-cream before bed time.  
Farts: still pretty darn stinky :)
Words: ummmmmm too many for his own good!  Eddie was recently discharged from speech therapy because he is talking too much to need any services!  He knows all animals and their sounds, foods, drinks (including the words wine and beer.... so proud, so proud.... haha) he knows all of the Sesame Street characters and songs, and is talking in 2 and 3 word combos that sometimes produce little sentences!  The best words, I have to admit, are "Love you, Mommy."
Laughter: he is sooooooo ticklish and once we get him going, he often ends up with the hiccups!
Naps: 1 nap usually from 1:30- 3:30 p.m.  
Night Sleep: sleeps through the night... most nights
Car Seat: so much better than last year, and since we now have a portable DVD player he is proving to be a good road tripper, thank goodness! He watches Caillou, Sesame Street, etc.
Accomplishments: where do I begin? This past year has been so full of doctors appointments that Edward has proven himself to be one tough little cookie.  He has been under anesthesia for eye surgeries 9 times.  He has been under anesthesia for MRI's 2 times.  He had 6 rounds of chemotherapy and 6 laser eye treatments. He went though weekly and sometimes biweekly blood count checks, weight checks, nausea and pain medications, etc.  Ahhh, when I think about it, I can not believe all that he has been through as a toddler.... And his major accomplishment is that he is one smart, happy, and nice little boy.

Do I wish he weighed a little bit more at his 2 year check-up yesterday? YEAH.  But what can I expect?  He went from eating like a preemie, to eating throughout eight months of chemotherapy, and now he is eating like a typical and picky 2 year old toddler!  So he did not make it on the growth chart for height or weight, but his big preemie head made it on the growth chart!  He is in the 75th percentile for head circumference! Haha!  He is just really SMART, that's all!  And his body will catch up, I am certain :)

We had another fantastic birthday party in Augusta, Georgia for Eddie last weekend.  He loved playing with all of his Johnson cousins!  We received so many more gifts and toys that our living room looks, well.....like an aisle in a toy store :)  He enjoyed more cake, more ice-cream, and more attention! We had a quick 48 hour trip, but it was awesome!  Thanks to everyone who came!

And today we awoke to some unexpected snow!  Unexpected as in Mommy did not watch the news, check the forecast, or connect with society to find out we were going to have a snow day!  Schools were closed and all of the neighborhood kids were out playing this morning.  It took me 45 minutes to adorn Eddie with 3 layers of warm clothes, but to my relief, he loved playing in the snow.  We walked Winston around the block and went sledding down a few hills in the neighborhood.  We only lasted about 45 minutes because of the crazy blowing snow and wind, but he did great!  His cheeks were bright red and he had a runny nose, but all of that was fixed by his first cup of hot chocolate, which he repeatedly told me was "coffee."

I am convinced, and this is probably how all Moms feel, but I have the cutest.kid.ever.