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.
Friday, March 1, 2013
Thursday, January 24, 2013
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.
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.
Sunday, January 13, 2013
We BLINKED.... and Edward is turning TWO!
First off, Edward had another EUA(exam under anesthesia) at Will's Eye on Wednesday and we received fantastic news. Both tumors were stable, nothing changed, meaning nothing grew or produced any seeds. The tumor in his right eye is still off to the side, allowing him to have full central vision. The tumor on the left side is half scar tissue already. The tumor is blocking a good portion of his macula, making his central vision somewhat compromised. We are going to keep patching and keep trying wear our glasses (Remember, he has glasses.... if only he would keep them ON!) Dr. Shields was pleased that there were no signs of any fluid or recurrence, and so they did not need to perform any laser treatment. Thank goodness! AND, Dr. Shields said that we could come back in four months! I nearly fell out of my chair when she uttered those words, because I couldn't believe it! Four MONTHS! It actually makes me a little nervous! Four whole months without an eye exam? Edward will have his six month MRI is March, but still! I am used to seeing doctors weekly, for many months of the last two years. If it is time, then I guess it is time, because this child is turning two, and he is on the move. A home wrecker, always on the go, a polly parrot, my little shadow, a go go go until you drop, kind of kid! He doesn't miss a thing, and he loves being around people, being the center of attention, and being silly. Did I mention he is SMART too? Okay, I know I am biased, and I am bragging, but the past two years have been the most difficult, ridiculous, crazy two years of our lives, and now that we have been given a little bit of breathing room, we are going to ENJOY every minute!
We had a little family birthday party for Eddie at my parents house yesterday to celebrate the good news....Sesame Street Style! And thanks to Pinterest I found decoration and cake ideas! Next weekend we are going to Augusta, GA to see Michael's parents and it WILL be his actual birthday (the 19th) and I know there will be more clapping, singing, and cake and ice cream. Thank you so much for all of your support and encouragement, prayers and positive thoughts, emails and cards, phone calls and text messages, facebook posts and comments. We are blessed with AMAZING support from each of you.
Cake turned out beautifully! Lots of blue dye and lots of patience!
A party is Philly isn't complete without pretzels spelling your child's name! Haha!
Swinging in Pop-Pop's arms!
Sitting with Pop-Pop with his Cookie Monster shirt on!
Edward with his best friend, Daisy girl :)
Sesame Street decorations everywhere!
The cake, with a big # 2 candle!
Oh Yum! He ate, and ate, and ate his cake yesterday!
Opening presents!
A Sing-a-mi-jig! I think that's what it's called! So funny!
And a Cleveland Indians jersey for next year! Woohoo!
We had a little family birthday party for Eddie at my parents house yesterday to celebrate the good news....Sesame Street Style! And thanks to Pinterest I found decoration and cake ideas! Next weekend we are going to Augusta, GA to see Michael's parents and it WILL be his actual birthday (the 19th) and I know there will be more clapping, singing, and cake and ice cream. Thank you so much for all of your support and encouragement, prayers and positive thoughts, emails and cards, phone calls and text messages, facebook posts and comments. We are blessed with AMAZING support from each of you.
Friday, December 7, 2012
Family Photos
My sister Amy was kind enough to give us the gift of a family photo session when Eddie was finished chemotherapy. These pictures were taken on November 17th, roughly 2 months after his last treatment, and his hair is definitely growing back, however very thin and blonde! Our wonderful photographer was Denise Feagans and she works out of Louisa, VA. She is a mother of five children herself, while managing to take precious family moments and turning them into beautiful photographs. We had a blast! And we will treasure these photos for years to come. I know many people already saw some of these on Facebook, but I want to post them all.
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