One Year Post-Transplant!

We made it through the year!!! Thinking back to the day that we first arrived at Duke, this point in time wasn’t even on our radar. We were just fixated on getting our some the best chance at life that we could give him. And now, here we are! Ezra completed his one year post-transplant visit at Duke last week and we could not be more proud. All of his tests came back great and he is continuing to thrive! We continue to be SO thankful for our team at Duke and all the they have done for him. They couldn’t believe how big he was and how much he is doing now. He also got the all clear to be a normal kid and go out and play in the dirt 🙂

He is only ONE year old (which is already depressing that he is that old) and his normal is spending his first five months of life in a hospital setting. He has remained resilient, strong (and strong-willed), trusting (unless you’re wearing a white coat!) and fun-loving throughout this past year of being poked, prodded, pumped with high level chemotherapy drugs and experiencing multiple spinal taps, nerve conduction studies and sedations. Obviously there are days that we wish this wasn’t our reality for our son.  That we would wake up and God would have a different plan. A plan where our baby is born healthy and thriving. But each day he brings us an abundance of immeasurable laughter, joy and hope that I instantly remember that he has a purpose after all he has been through, even if we can’t see it clearly yet.

Ezra now has six teeth (and is working on several more much to his dismay (thank you Motrin!), loves to say “dada” and “mama”, waving and although he isn’t mobile yet, this kid will barrel roll himself from his nursery to the family room to find mom and dad and has started pulling himself up. He continues to work hard in physical, occupational and speech therapy (although each of his therapists agree he has quite the stubborn streak!) and we are so proud of the strides he is continuing to make each week. He also enjoyed being able to celebrate Halloween with friends and Thanksgiving with family this year. We know he will love the Christmas season as well and we are looking forward to starting traditions with him!

We have learned so much throughout this so far journey in terms of our faith, our marriage, our relationships with our family and friends and in what it means to be a parent, which is unconditional love and selflessness. It is so important to us to thank everyone who has been there for our family during this past year and those who have continued to follow Ezra’s journey from afar. The support system that we have has been nothing short of extraordinary. We will keep fighting for you Ezra, but we rest assured that God has BIG plans for the little spitfire in you.

1 Peter 5:10: “And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.”

Here are some family pictures we had done recently courtesy of the wonderful Chris Files Photography


And some more of what Ezra’s been up to lately…

First birthday party!

Checking out the smash cake and starting to dig in…

Too intrigued with the cake to smile

Halloween with his friend Owen dressed up as lions!

Ezra’s first time on a plane!

Pulling up!

Visiting with one of his favorite nurses for brunch in NC!

Thanksgiving day 🙂

He LOVES to read books!

Joyful (almost) always!



4 thoughts on “One Year Post-Transplant!

  1. This brought tears to my eyes. Praise God for you all and baby Ezra. I’m do thankful that God restores us to new. God bless you all and I will continue to keep you all in my prayers.

  2. Ezra has amazing parents! You two have been a rock for Ezra, steadfast and strong on his behalf. Your love and faithfulness are inspiring.
    I don’t see the stubborn side of Ezra (because my Grandson is perfect) but I do see determination when he wants something. Go Ezra!
    I am keeping on with PrayersforEzra Love Grandma B

  3. Praise to God for Ezra and his mommy and daddy’s strength, wisdom, and faith in our Lord Jesus. This sure brought tears to my eyes and overwhelming joy to my heart all at the same time. I love our boy and his excitement for life! I agree with Grandma B, and that is Go Ezra!
    Love and prayers forever for our precious Ezra, his amazing parents and circle of support! Ezra you have already taught Grandma and Grandpa Mathes so very much about life!

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