Saturday, February 22, 2014

MEET EZRA: 10 MONTHS OLD


This little sweetheart turned 10 months old a couple day ago. It was a rough week, but for a good reason...Ezra's oncologist okayed resuming vaccinations! (The decision to resume was based on his blood counts being within the standard range last week). It's crazy, with all the horrible things he has endured, that these shots had such an affect on the little guy...but he was pretty miserable. Thankfully he seems to be back to his sweet, happy, easygoing self, and we are thrilled that we are starting to make up for lost time with his missed vaccinations. Hopefully in a month or two we will cautiously reenter society ;)

As far as milestones go, Ezra is babbling up a storm these days, loves clapping his hands, and rolls everywhere he wants to go. He has some work to do with his core and upper body strength, so we have initiated Early Intervention support to help us with exercises to improve his strength and make sure he is staying on track developmentally. The best thing about EI is that they come to our house! No packing up the boys and scrambling out the door to get to the clinic on time, we get to experience these appointments in the comfort of our own home.

Happy 10 months little buddy! You are the sweetest little fighter we know and we love you so very much.

PS - Our friend Kasey shared this video on Facebook this week and we found it to be SO encouraging, you should watch it too: http://www.youtube.com/watch?v=k9ZcN_6wzp8

PPS - Ezra's buddy Braelyn and her family could use some extra prayers in the next few weeks, please send your love their way!

 

Friday, February 14, 2014

MEET EZRA: OUR HEARTS ARE FULL

Our hearts are full, overflowing even. Yesterday Ezra had his blood work/oncology appointment up at the children's hospital, and in case we aren't *friends* on Facebook and you didn't see our status update, we want you to know the latest:

Wednesday, February 5, 2014

EZRA & FRIENDS: 3 IN A MILLION

It seems like a lifetime ago when I first wrote about JMML (Juvenile Myelomonocytic Leukemia). The statistic varies a bit, but one source says,

An estimated 25-50 new cases of JMML are diagnosed in the US each year, which equals about 3 cases per million children.

As you know, Ezra is one of those 3 in a million, and I'd like to introduce you to the children who account for the other 2 in that million. I've come to know these kiddos (and their mamas) through Facebook...and we pray for them on a daily basis, along with our sweet Ezra. I'd like to invite you to pray for them too, and to think of them and their families when you remember Ezra and our family. Before I tell you more about these little sweethearts, I will add that they also have Ezra's second diagnosis, Noonan Syndrome (PTPN11). While it is expected that all three of their JMML cases should self-resolve without bone marrow transplant, these precious babies have a myriad of other struggles and medical issues caused by NS. Since February is Noonan Syndrome awareness month, I encourage you to visit the Noonan Syndrome Foundation website to learn more about this complex genetic condition (which in and of itself is much more common than 3 in a million; it is close to 1 in 1000 to 2500 children).


via Noonan Syndrome Foundation on Facebook

Without further ado,

MEET LOGAN:

Logan's mama was the first NS mama I came to know back when we only had our JMML diagnosis, but the NS diagnosis was looking more and more likely. Logan is just 2.5 months older than Ezra and recently celebrated his first birthday.



MEET BRAELYN:

I met Braelyn's mama a couple months after Logan's mama. Braelyn is just one month older than Ezra to the day!



Like Ezra, Logan and Braelyn have been through more than their fair share in their first year of life, undergoing MULTIPLE sedated procedures and surgeries, and enduring more needles than you could ever imagine. These three cuties share many similarities, but being that NS is so variably expressed, they have medical issues that distinguish themselves from each other as well...those are their stories to tell.

I am so thankful that I've gotten to know these two babies and their mamas. Whether a texting frenzy or Facebook messaging session, it is such a blessing to be able to bounce around questions, empathize with each other, and encourage one another. I count it an even greater blessing that the three of us share the same faith and can relate to each other on a deeper spiritual level. I believe it is no accident that the three of our families have crossed paths and that our little ones are so close in age. I look forward to the day Ezra, Logan, and Braelyn are thriving and our families can all meet each other in person.

Thank you for continuing to remember Ezra in your prayers! I want to ask you again to please think about Logan and Braelyn when you think of Ezra...3 in a million who are so worthy of your thoughts and prayers.