Friday, April 25, 2014

April 9th Eye Exam and Philly Week

Eddie and I drove to Philly (my parents' house in Doylestown actually) on Monday April 7th. We hit a little bit of rain, but otherwise the drive was alright.  It took us about 7 hours all together with one stop.  Eddie sat in the back seat and watched Max & Ruby, Mighty Machines, Curious George and Lady and the Tramp, or as he calls it, "the doggies eating pa-sketti (spaghetti)!  He was great for the trip, minus the few times he unbuckled himself and got out of his carseat- his new trick. He learned his lesson though.  He realized that Mommy CAN scream, and WILL scream, if need be.  He promptly returned to his carseat, buckled himself back in appropriately, and then sobbed and said "I'm sorrweeee!" over and over again.  He scared me, I scared him.... I would say we are even!

I was so excited to find out that my parents and Danny were going to the Philadelphia Phillies home opener the next day!  They had extra tickets and knew we would take the bait!  Although Daddy is a diehard Braves fan, there was no way we could turn down this opportunity.  Besides, usually the day before his eye exam I am a nervous wreck and so the Phillies game was a GREAT way to pass the time.  We all had a blast!  We conditioned Edward to say "Goooooooo Phillies, booooooo Braves!" even though we were not even playing the braves! Eddie was provided all of the necessary gear to look like a true fan!  
He likes the backwards hat style-  This looks like Daddy, every single day of college... backwards hat with crazy hair!
Go Phillies!
I stole Nicole's jersey out of her drawer :)  She's away at college... Whatever she leaves behind is fair game!
Finally in our seats!
The national anthem...
Play ball!
Grammy, Pop-Pop and Uncle Danny!
Best buds!
View from our seats
Go Phillies!
Walking back to the car on Pop-Pop's shoulders.  

What a blast!  He loved the music and loved to cheer and clap, even though he didn't even know what was going on during the game (kinda like his Mama!). He loved the opening fireworks and he thought the Philly phanatic was so funny. He ate a hot dog, peanuts, and a pretzel!  He also loves Philly pretzels just as much as me.  I guess we will both participate in carb loading every time we visit Philadelphia.  You just can't beat a Philly pretzel.

While we were at the game I received the phone call for Eddie's exam with a 9:30 arrival time.  We planned on letting Eddie sleep as late as possible since he can't eat/drink when he wakes up before the anesthesia.  I snuck downstairs to grab a cup of coffee at 6:30 a.m.  I was chatting with my Pop when we both heard little tiny footsteps coming down the stairs. UGH, he was awake.  We left the house at 8:00 a.m. leaving us plenty of time to get down to Will's Eye with rush hour traffic.  Fortunately and unfortunately, the morning car ride ended up being the worst part of the day.  Eddie kept asking for snacks and he realized that we couldn't give him anything.  I told him we are going to see Dr. Shields, and that after we saw Dr. Shields he could have a snack. The poor boy knew exactly what was going to happen and he knew exactly where we were going.  And... he flipped out.  He started screaming and yelling and sobbing, "I don't want to see Dr. Shields.  This is not fun.  I don't want her to check my eyes.  I want to go home. " He started hitting himself, punching himself in the head, banging his head on the carseat, etc.  It was a crazy scene as we sat in traffic on I-95.  I jumped into the back seat to console him, but he wanted nothing to do with me.  He was angry.  He kept trying to hit me and punch me.  Then he would cry and say he was sorry. He would pull my hair then start crying again, saying he was sorry and that he loved me.  This whole love/hate panic situation lasted 45 more minutes.  If you have ever met Edward or played with or talked to Edward, you would probably think I was making this up.  He is a sweet kid, a quiet kid.  What I just described was a monster!  A crazy child! A troubled child, even.  But no, it was Eddie, and all of his frustrations finally bubbling over...When we finally arrived at Will's Eye Eddie's face was red and blotchy from screaming and crying.  My mom and I were not in the best of spirits either.  It was hard to listen to him and to acknowledge his justified fears. But as I tried to calm him down and make him feel better I knew that we had to still see Dr. Shields today regardless, and that we will still continue to do this to him for years to come :(  It was sad, very sad.  I felt sick to my stomach before we even walked in.

Luckily the commotion of parking the car and unloading and carrying all of our 10,000 toys, games, books, and DVDs that we brought with us distracted him.  After we checked in and sat down in the very full waiting room, he started playing with the other kids who were also waiting.  After about 2 hours we were called back into the pre- op room were the anesthesiologist discusses his history with anesthesia, and the nurses check his vitals, and Dr. Shields briefly examines him and reviews his case.   I held him and she looked into his eyes.  She wanted Eddie to look directly at her, but he was zoned out, watching the Disney movie Cars that was playing on the small DVD player across the room.  She stepped right into his line of vision and he started fidgeting out of my arms to see the movie screen.  He said, "Excuse me, I am trying to watch my movie."I almost died.  Haha!  Luckily, EVERYONE, including Dr. Shields and her entourage, laughed out loud.  Like excuse me, world famous eye surgeon, you are in my way.  She thought that was very, very funny.  Before each eye exam, she uses a marker to place a dot on his forehead above each eye, indicating the eye exam will be performed on both the left and right eye and she told Edward that one dot was for Lightning and the other dot was McQueen.  He thought it was cool that he had 2 dots on his head named Lightning McQueen, the world's fastest race car!  After she left the nurses gave him some oral versed (which is so gross) but he was so thirsty he gulped it down.  After it kicked in the nurses came to take him away.  They did a great job distracting him, but he looked back at me, reached out and whimpered "Mommy."

He was back in the OR for a while, a whole hour and a half.  Mike and I were texting back and forth, nervous wrecks, wondering what was wrong.  Something had to be wrong.  Last eye exam, 6 months before this, he was in and out of the OR in 20 minutes... both eyes stable, no cancerous activity.  And this time I was sitting in the waiting room, tapping my foot, checking the clock, eyeing every single nurse who came out of recovery announcing names of patients.  I started to cry.  Tears dripping down my face.  My mom looked over and saw me, and she too, thought the same thing as I did. We must be getting bad news today.  Something is wrong.  What the hell is taking so long?

Finally, "Edward Johnson" was called and we rushed back to see him.  Dr. Shields came in with a big thumbs up and said, "Everything is A-Okay.  He looks great, both eyes are exactly the same."  I sobbed, and sobbed and sobbed.  Eddie was still waking up in my arms, but, in between deep breaths I said to Dr. Shields, "I just can't take this anymore, this waiting game in between visits is horrible.  I have such anxiety!" She hugged me and she said I know this is tough, but it is time to relax and start enjoying life.  No tumor growth, no seeds.  Great news.

From what we have heard from other RB patient families, Dr. Shields has two operating rooms right next to each other.  SO,  she pre-ops two babies, both babies go under anesthesia, she checks and performs whatever treatment needed on each baby, and then debriefs with both sets of parents. From what we gathered, Eddie was the 2nd of two babies to be examined, and the baby before Edward had some issues and needed more treatment, which delayed Edward's examine.  He was under anesthesia and we were in the waiting room thinking terrible, terrible thoughts.  SO what we learned is that his eye exam could take 20 minutes, or it could take an hour and a half, and mean the same thing.  It is a good thing to know, but I guess not the best thing to sit through and learn.

I sat there and continued to cry when Dr. Shields left.  My mom was also crying and Edward was finally waking up a bit, but he was so delirious from the anesthesia he was talking to us but not making any sense.  The recovery nurse spoke up and said, "Listen, I have been working with Dr. Carol for a long long time... for many years in fact... and she doesn't sugar coat anything, so if she tells you things are good, then she means it.  You have to trust her, she is the best, the absolute best.  The good thing is that you are here, and she is Eddie's doctor.  The bad thing is that not all kids get to come to her.  So trust her, relax. Enjoy life.  She means it."  So of course, many MORE tears later and we finally packed our bags and headed home with Eddie.  He finally started drinking and eating in the car on the way home.  He ate, and ate, and ate .... and then puked it all up.  Luckily, we had a random plastic bag in the car.   Five minutes later he started asking for another snack.  I told him no because we were waiting for his stomach to settle down.  Then he said, "You promised I could have a snack after Dr. Shields." Yes sweet boy, you are right.  Grammy asked him what he wanted to eat, and told him that she would get him whatever he wanted.  And do you know what he wanted??  A pretzel.  Haha, so before we went home, we stopped at the Philadelphia Pretzel Factory store in Doylestown and bought the boy some pretzels.  The anesthesia finally wore off, Pop-Pop came home from work, we ate dinner, and everyone went to bed.  We were EXHAUSTED.

The next day my cousin Bridget invited us to go to the Philadelphia Please Touch Museum.  She was taking her little guy Ryan.  We were so excited and we knew that Eddie needed to have a good day.  My mom and I met Bridget and Meghan at the museum and the boys ran wild.  It was AWESOME!

Eddie serving water-ice! Oh yeah!
Rita's is the best!
He would ask, "Umm, what flavor would you like?"
When I tried to taste my water-ice he said, "No Mom, it's just pretend." Like, duh....
Working the excavator!
A true construction worker!
Fixing the car.....
Wearing the mechanic jacket...
Riding the tram....
So excited!
Bridget, Meghan, and Ryan playing with the air/ball station!
Oh no!  There it goes....
Up, up, up and away!
Here comes the ball again!
Ryan turning the wheel!
Feathers flying everywhere!
Eddie pumping gas....
Statue of Eddie?  HAHA
Water tables...
They could have stayed here all day....

Playing piano!
He is making up a new song!

Taking a break.....
Riding on the horse!
Grocery shopping!
Time to check out!
This is what my mother bought him from the museum gift shop!!!!!  HAHA!  He LOVED it!
Doing some yard work for Grammy!

Overall, is was a GREAT week.  Eddie enjoyed every minute (except the eye exam).  He loved playing with Pop-Pop, Grammy, Uncle Danny, Uncle Brian, Aunt Renee and his cousins.  Eddie knows that he is loved and that is so good for him.  I don't want him to be scared to go to my parents house because many times it involves an eye exam.  I do think that my parents, aunts and uncles, sisters and brothers, and cousins make him feel safe, comfortable, and happy! God is good.  We are beyond blessed and beyond relieved. Dr. Shields is an amazing person and I continue to pray for her healing hands, saving the eyesight of so many babies.

Oh, and I almost forgot!  Go Phillies!!!

Sunday, April 6, 2014

Vacation Time!

March was our time for vacation! After being trapped ( I guess that's a strong word, haha) inside all winter because of the unending snow and freezing temps, we were beyond ready to wave goodbye to Cleveland for awhile.

We travelled to Augusta, GA and Kiawah, SC.  We definitely made the most of our time.  Eddie was able to see so many aunts, uncles, counsins, etc. We spent as many minutes OUTSIDE as possible.

Flying his first kite!
Eddie was so excited!
What a windy day... perfect for kites!
Trying to reel our sea turtle back in!
Beach time!  Eddie loved digging with his cousin Cameron!
And, even though it was FREEZING, Eddie didn't hesitate to jump in!
A little PBS kids and an ice cream sandwich before bed....
Trying to go outside to ride his bike... rocking his pajamas, Mommy's cowboy boots, and a bike helmet :)  No, we didn't let him outside.....
Rocking on the porch...
Sneaking some green beans as we prep for dinner!
Eddie's first sleepover with Jack and Mary Cate!
Cheese dip and chips with MC!
In the lobby of University Hospital, meeting Papa for lunch!
The Katies :)
Visiting Granga on St. Patrick's Day

Singing "Happy Birthday" to Michael
Family photo

Eddie was supposed to have his MRI here in Cleveland last week.  Unfortunately, he came down with a high fever and nasty cold the night before, and so the MRI was cancelled.  It is now rescheduled for April 28th.

Tomorrow Eddie and I are driving to Philadelphia because Eddie's eye exam at Will's Eye is on Wednesday.  Yep, it is that time again.  It has been 6 months since his last exam.  Fingers crossed that everything is stable.