Here is the latest medical update on Justus…
Being referred for ketogenic diet trial. In the meantime, attempting to wean off one of seizure meds. Seizures remain uncontrolled and occur multiple times daily despite having tried many different medications and dosages.
Continuing to work with Occupational Therapy and Speech and Language Pathology (SLP), but no communication or swallowing.
Crawling form and function has improved greatly, but still not using left arm/hand functionally.
Started twice weekly early intervention classes through the school district in preparation for starting kindergarten next Fall. Will enable us to access services next year at local elementary school.
Starting the process of applying for disability, applying for a service dog (for seizures and balance/safety) and on a list for consideration for cannabidiol/ intracctable epilepsy trial at OHSU.
This past weekend Kelli and I hosted a “Love and Respect” video conference for our church. If you are married and have never attended this conference, I want to emphatically ask you to find one in your area and go! It is so worth the time and effort. Dr. Emerson Eggerichs does as fine a job as I’ve seen done addressing a real challenge facing every marriage. But one particular line he said really caught my attention. He was talking to husbands and wives who were in challenging situations with spouses that weren’t necessarily interested or willing to do anything to improve the situation. I can’t remember the exact words he used, but in essence he made this statement:
“If you don’t know what’s going on, will you choose to trust God in the face of what I don’t understand, in light of what I do know about Him
and trust about Him… or will you choose to not trust God based on what I don’t understand, in light of what I know and trust about him.”
In other words, we can choose to be obedient to God based on what we know to be true about Him, even though there are things going on we don’t understand. Or we can choose to react based on the things we don’t understand, ignoring the things we know to be true about God.
As soon as I heard that, I was immediately reminded of this journey we are on with #TeamJustus. I’m reminded of some of the heart wrenching prayer requests I read on Facebook. I was immediately thrown back into those dark days in Doernbecher’s crying out to God and trying desperately to understand His will and His providence. I know some of you reading this are all too aware of that same feeling!
Of course I had to also recall the lesson we all learned in the midst of this journey… similar to Dr. Eggerich’s word for married couples.
“Don’t forget in the dark what you learned in the light.”
We trusted that what we learned in the light, “God is love”… “God is sovereign”… we tried hard to remember that truth. Some of you were the voices that helped us stay strong. But we also remembered this truth from Matthew 10:27:
What I tell you in the dark, speak in the daylight; what is whispered in your ear, proclaim from the roofs.
So I for one, grew as a man during this journey. I have a long way to go, but in those darkest hours God challenged me to remember the truth about Him and His character. That lesson repeats itself in my relationship with Kelli, with my kids, and in the challenges life throws at me. I’m encouraged, and I hope you are as well, to remember what is true about God when life is thowing you curve ball after curve ball.
We still don’t know what will ultimately happen with Justus and that is frustrating. But we know God and we trust in His goodness and love for us and for Justus. If you are in the middle of a storm (marital, parenting, health) I hope #TeamJustus is an encouragement to you to continue choosing trust in the midst of uncertainty and frustration. God is good and God is able!
Of course if God has already brought you through a storm, the “proclaim from the roofs” what God did in the dark! Be an encouragement to those still fighting the storm! I know there are many on the #TeamJustus prayer page that still need our prayers… keep praying. I would covet your prayers for Alyse and Jason as they continue to “figure out” this season of life they are in. Though we are beyond excited for the progress Justus is making, in many ways they are still leaning on what they learned in the light. The dark, isn’t scary dark, but it can still feel like looking at the moon on a cloudy night. They can make out the round moon, but it’s anything but clear.
Thanks again for your faithful prayers for Justus and the rest of those on #TeamJustus. You truly are our heroes! As you can see by the medical update, Justus gets stronger and stronger, but there continues to be big medical and physical questions to answer. There is much we don’t understand. But in the face of what we don’t understand we are choosing to trust God in light of what we know of His love and faithfulness.
Thank-you #TeamJustus. We love and appreciate you all! Remember to keep sending in your prayer requests as we continue to read and pray for those requests. The Moon is Round!