Wednesday, August 13, 2014

MEET EZRA: 15 MONTHS OLD

showing off on big brother's birthday 07/19/14

Super behind on this post (Ezra will be 16 months a week from today), but I am so behind on Shutterfly albums and baby books, I need to document some of these milestones before we forget them! Ezra's gross motor skills have really blossomed over the past couple months! He has gone from only army crawling and not being able to push up to sit, to being able to do all of that, plus crawling on all fours, plus pulling up to stand, plus cruising all over the place. We are SO proud of him and his progress and determination!

sporting his ornamental g-tube in a kitchen sink bath

Still tiny (wearing 6-9 month clothes), and still just as sweet as can be (although getting a little feistier and sassier these days ;)

Happy 15 (almost 16) months sweet Ezra, you've come a long way baby!

"A person's a person no matter how small." - Dr. Seuss

MEET JUDAH: FOUR YEARS OLD

free Slurpee at 7-Eleven on 07/11/14
So our first baby boy turned FOUR last month. We can hardly believe that this kid will be starting preschool in just a few short weeks. I'm already having separation anxiety, but he is going to love it! He will also be starting soccer in the fall. It is so exciting to be reaching these new milestones, but my heart is aching as well. Where has the time gone!?

Judah is such a sweet boy. He continually amazes us with his awesome memory and has such a cute way with words...he is always making us smile. He is so long and lean (90th percentile for height and 80th for weight), it's hard for people who don't know him to believe he's only four. He could spend all day playing with cars and trains, but has loved our many trips to the pool this summer getting more and more brave each time. He loves making new friends but doesn't quite understand personal space...we're working on saving kisses for family members only :) He ADORES his cousins. He got a new bike and other lovely gifts for his birthday, but I think his favorite present of all was just getting to spend the day playing with his cousins!

We love you so very much, Judah. We're so excited for all the new things this year has in store for you!

What is your favorite color? red & blue
What is your favorite toy? cars & planes
What is your favorite thing to watch? Mater's Tall Tales
What is your favorite thing to eat? "Quesadillas with chips, chocolate milk & applesauce"
What is your favorite thing to wear? Packers shirt
What is your favorite game or sport? soccer
What is your favorite animal? cheetah
What is your favorite song? Acapella (by Karmin)
What is your favorite book? Pajama Time
Who is your best friend? Caeden
What is your favorite holiday? Christmas
What do you want to be when you grow up? an Engineer like daddy

invitation inspiration via here



cupcakes by Corvallis Cake








Thursday, May 15, 2014

MEET EZRA: REFLECTING ON A YEAR

What a year.

There were the earliest days that should have been filled with joy and happiness and getting to know our sweet boy and establishing our family of four, that were instead filled with so much sadness, so much worry.

There were so many sleepless nights, fearing that Ezra might spontaneously bleed to death because his platelets were so low. Peering through the darkness, watching for blood...from our newborn baby.

There was blood dripping onto floors of hospital rooms, after too many failed attempts to draw a lab or place an IV.

The vomit. Oh the vomit. There were SEVEN months of vomit, often multiple times a day. Of all the horrible things we've witnessed, this image might haunt me most.

There was the time Ezra had an IV in his head, and I had to sit there with a nurse, and slowly and gently pull out one hair after another in order to remove the adhesive covering before we were discharged. I will never forget Ezra's precious hair, torn from his precious head, clinging to my fingers...all this after quite possibly the worst night of our lives. It was probably one of the more minor things that Ezra has experienced, but the night Ezra had to have a platelet transfusion when he was only a month old was excruciatingly painful, stressful, and scary. Maybe it was the six attempts it took to place an IV, the doctor who exuded anything but confidence for our unique situation, the many forms you have to sign to acknowledge the complications that can arise from accepting someone else's blood products...or any number of factors that were outside our control that night. If I could erase that entire night from my memory, I would in a heartbeat.

There were entire days spent on edge, waiting by the phone for test results. Somewhere along the way I lost track of the number of days spent this way.

There was frustration like we've never known after months without answers...the topic of many a blog post.

There was the battle to keep breastfeeding.

There were too many procedures requiring sedation.

There was the painstaking task of recounting Ezra's entire medical history every time we had to meet a new doctor or medical professional.

There were nights spent desperately searching on the internet, trying to put the pieces of the puzzle together.

There was finally hearing the words: "We think we finally have an answer. JMML. This type of leukemia has a 50% survival rate...you'll be meeting with the transplant team next week. Ezra's best chance for survival is if he is as healthy as possible when he goes into transplant." (These words came directly after three days of fever and vomiting).

There was the time we sat in an exam room and tried to explain to our three year old that we had to rub a pokey "toothbrush" on the inside of his cheek because it would help baby brother. And then we had to imagine what it would be like if our three-year-old was a match and would have to go through with the bone marrow donation. We had to imagine both of our children in pain.

There were days spent desperately searching for the light at the end of the tunnel and struggling not only to put one foot in front of the other, but just to get out of bed in the morning.

There were days we felt like we were walking through the valley of the shadow of death, questioning if our tiny and frail little baby could possibly survive aggressive chemo and a bone marrow transplant.

There was coping with the reality that life was happening all around us while our lives would be at a complete standstill until Ezra was healthy.

There was a hole being surgically placed in our baby's belly.

There was coming to terms with the fact that Ezra's best chance for survival was testing positive for a genetic disorder with its own list of medical problems.

There was googling "Noonan Syndrome" and seeing incredibly troubling, outdated information before finding current, much more helpful resources.

AND THERE WERE MUCH, MUCH HAPPIER MOMENTS.

There was peace that passes understanding.

There was mountain-moving faith.

There were miracles.

There was gratitude.

There was the realization that a marriage and love could actually grow stronger amidst adversity.

There was my mother-in-law who faithfully met us at every single children's hospital appointment so that she could watch big brother, keep him away from the germs at the hospital, and allow us to focus on getting help for Ezra.

There was my mother who began coming over faithfully every single day after work so she could lend a hand while we figured out how to administer Ezra's chemo and other medications...and who more often than not, still stops by after work to lend a hand.

There was my sister who hung out with Judah during our frequent visits to Ezra's primary physician (pretty serendipitous that her work is right next door to the doctors office).

There was my niece who has helped us by folding more loads of laundry and emptying the dishwasher more times than I can count.

There was my dad who has prayed more fervently than anyone I know.

There was my father-in-law who shaved his head and raised money to support childhood cancer.

There were literally hundreds of prayers from family and friends.

There were meals that showed up at our front door.

There was cash handed secretly to us at church with a whisper that we should use it to fill our gas tank.

There was a week of fasting and prayer by many of our church family that immediately proceeded Ezra's first normal CBC.

There was kindness from strangers.

There was Josh's amazing company and co-workers.

There were full-blown community fundraising efforts.

There was a gifted photo session (at the time we thought it might be the only family photos we'd have a chance to get with our sweet boy).

There were words of encouragement from old friends and friends of friends and friends of friends of friends.

There was Kasey.

There was discovering an amazing support group of other NS parents just like us, including our "3 in a million buddies."

There was our oncologist telling us about the doctor she knew with Noonan Syndrome.

And there was going on to learn about a Ph.D. student, and a pharmacist, and wonderful parents, and so many other AMAZING people living with Noonan Syndrome.

And there were small strides, and big strides, and normal lab results, and weeks without vomit, and and and, there was a first birthday! A day that we feared might never come.

This really only scratches the surface of the year that was. But I needed to write this post, to close this chapter, so that we can start a new one. So we can start living again.

We are ready to continue spreading awareness about JMML and Noonan Syndrome.

We are ready to gather more stones and face whatever Goliaths come our way.

We are ready to fight for and advocate for Ezra to get the help he needs to be the happiest, healthiest, smartest boy he can be.

There will be days when we are tired and weary and we will have to reread the posts we've written this past year to remind ourselves of that fire and desire to be brave and courageous again.

And God will give us the strength to face another day and conquer another challenge.

What a year. Here's to many, many more.


Sunday, April 20, 2014

MEET EZRA: ONE YEAR OLD!


Baby P 2.0, baby brother, baby boy, squishy, stinky bottom, sweet-sweets, E-Z, baby bubba, little E, our one and only Ezra, amidst those uncertain early days, there were times we we didn't know if you would live to see this day...but you did it!!!! Happy 1st birthday to the sweetest, strongest little guy we know!

What a lovely day for a birthday...Easter Sunday. We started off with some pics at home, then went to church where Ezra got to go to Sunday school for the FIRST time. Afterward we rushed home to get ready for the big party with our family! Here are some of the best shots of the day:

birthday morning

the birthday Easter bunny



first time at Sunday school

Ezra and his buddies

the party!

the Very Hungry Caterpillar birthday

lovely cake from the Sweet Life Patisserie



checking out Ezra's monthly pictures








not feeling the gluten/dairy/soy/egg-free bday cake

buried in presents



the cousins! (missing Jacob)

all the family


Thursday, April 10, 2014

MEET EZRA: FEELIN' THE LOVE & GIVING THANKS


This afternoon my phone rang with a number I didn't know...but since I spent a couple years working on campus and my mom has worked there for nearly 15 years now, I knew it was a campus number and took the call:

Me: "Hello?"

Caller: "Hello this is Sean Mannion. We've heard your family's story and we'd like to invite you to practice."

No big deal. Just Oregon State's quarterback on the line! Glad I took the call! In case you haven't noticed, we're kind of diehard Beaver fans around here...especially for Beaver football. Josh was able to attend one game last year at the last minute, but I didn't go to any games...for probably the first time in 12 years since transferring to Oregon State my sophomore year. Josh and I went to every home game we could as students and held season tickets for a few years after we were married. The past couple years we attended as many games as possible, but last year was obviously a little difficult with Ezra's unpredictable medical issues. There were a lot of things we missed out on as a family last year...cheering on our Beavs in person was one of them. Needless to say, we are thrilled for the opportunity and our answer was YES, we would love to go to practice! (We've had many fairy godmothers/fathers over the past year and we know that one of them, Mrs. Oshinowo, is to thank for being the little birdie in Oregon State Football's ear to encourage them to reach out to us...thank you Lola!).

This is just one example of the love shown to our family. There have been so many events in honor of Ezra over the past year I don't really know where to start. There were the Friday bake sales and golf tournament at NuScale (Josh's work) in the early days. There was the Nadzitsaga Lacrosse Club Medicine Game in October and the very well attended Papa's Pizza event last November.



And just this past Saturday our family was listed as one of the recipients of the proceeds of the Corvallis Kiwanis Club's 60th annual pancake breakfast.


We belong to an amazing community. Wow.

But the outpouring of love to our family doesn't stop in Corvallis. Throughout this journey with Ezra, we have received so much love, many prayers, and support from throughout the country (even world, can you believe that?). In February, my best friend Sarah who lives all the way in Nashville, TN hosted a Premier Designs "Party with a Purpose" that was so well attended (both online and in person), we were able to use some of the proceeds to buy a special new high chair for Ezra that will help him be more organized with his eating and will benefit his overall motor skills. How great is that?

It is not lost on us how blessed we are. Our family, our church, our community, our friends, our co-workers, and complete strangers have made all the difference to us throughout this year. What could have been a stressful financial time has not been. You have allowed us to focus on surviving the hardest days and celebrating the happiest ones. Not all families in our shoes can boast of such an outpouring of love and generosity, and we do not take that for granted for a second. Thank you!!!!!


We want you all to know that we plan to use the Ezra Parker Fund (set up by our friends from church after Ezra's initial JMML diagnosis) to continue paying for Ezra's ongoing special needs and medical expenses...and someday we hope to attend the Noonan Syndrome Conference so we can meet other families who have been touched by Noonan Syndrome and consult with doctors who are NS experts. In the meantime, to those of you who continue to express your desire to help Ezra, in lieu of donating directly to our family we encourage you to donate to any of these organizations who are leading the way in helping children like Ezra who have Noonan Syndrome and/or JMML (in no particular order):


Again, we are SO thankful for the support we have received over Ezra's first year of life. It brings tears to our eyes and brings us to our knees in thanksgiving to God for the way he has used each and every one of you to encourage and bless us. The generosity poured out to our family has been so humbling...and we will make it our mission to look for opportunities to pay it forward in the future. Thank you.


Wednesday, March 26, 2014

MEET EZRA: 11 MONTHS OLD


Since I'm almost a week late on this post, I'll keep it short. This past weekend we took an impromptu trip to the coast...and Ezra loved every minute of it. It was amazing being out and about as a family and we are hopeful there will be more and more carefree days like this in the near future. There is more to say, but I'll have to save it for another time...

Rogue Brewery, Oregon Coast 03/22/14

Until then, happy 11 months Ezra! We can't believe your 1st birthday is just around the corner!