No dice friends.
It seems every big moment...every PET Scan, CT Scan, MRA...every defining moment where we needed the breakthrough...needed the answer to prayer...needed the miracle...
We've been devastated.
We needed heart cells to be dormant...they were dead. We needed calcifications to reduce...they increased. We needed bones to strengthen...they've weakened.
The calcifications at this point looked no different than 8 weeks ago. The glass half full contingent among you will note that it looking no different means it doesn't look worse. That may be true. Maybe the treatment has stabilized this nasty disease.
The glass half empty folks say, this treatment was supposed to do the work...clear the calcifications...it's not doing it.
We are more or less out of viable options. We will continue the treatment until a couple other things are ironed out.
I believe with all my heart that Chaia is fearfully and wonderfully made. That each genetic variance. Each one...causing this rare disease...then the rare strand of this rare disease. I've said it before but God is not up in the Heavens in a Trinitarian huddle trying to figure out how the Thompson kid fell through the cracks. "Jesus, did you drop the ball on her DNA?"..."Not me Pops"..."Holy Spirit?"
No she is crafted with purpose and intent for His glory and renown.
Case and point...in an appointment with the neurologist today, he showed us something rather remarkable. The two primary vessels that provide blood flow to the front portion of Chaia's head are narrowing...perhaps to the point of minimal or zero blood flow to her brain. This is a crisis...except?...the two primary vessels that provide blood flow to the back portion of Chaia's head are at least double the size of the average person's vessels...so she actually has as good or better blood flow being supplied to her brain as anyone.
Made.
Fearfully and Wonderfully.
I remember my seminary classes...learning that the verb for created in the Hebrew (see Genesis 1) is used a number of times in the Old Testament...but it is only a verb attributed to God.
Only God creates.
I think Paul had this in mind when he wrote in his letter to the Corinthians that if anyone was in Christ, they were a New Creation.
So I think about what I'm asking God for.
I'm asking Him to rewrite DNA. To undo strands that are variant. To make a hellish disease go away by bringing new creation.
I've been hoping for just one report from the hospital that encouraged our hearts and lifted our hopes...and it's just not coming.
Chaia is on borrowed time. We're playing with house money.
But where cardiologists and neurologists and endocrinologists and geneticists seek to sustain life (and in Chaia's case have done so admirably), God doesn't just sustain life. He creates it. Out of death. Hopelessness. Brokenness.
It's what He does. It's His nature.
Chaia needs it. I need it.
And my hunch is you do too.
Bring us to new life in the way of resurrection. Crush us and remake us.
Fearfully and Wonderfully.
We have no where else to turn.
And that my friends is a very good thing.
10 comments:
"I believe. Lord, help my unbelief" Mark 9:24.
Keeping the faith and continuing to pray for you all. Believing that Chaia's story has a long way to go! Love you all.
Yes, we believe Chaia is fearfully and wonderfully made!
Father right now, I ask that you begin rewriting Chaia's DNA, every strand, remake it just like you created her blood vessels to her brain to provide more than ample blood flow. We know you are the CREATOR and Chaia is your CREATION. Even though the road doesn't seem to be ending, I ask you to bring a calm to Ben and Shaina's spirit. Let them know you are holding them in the palm of your hand and you aren't letting them go! Chaia isn't going anywhere until you say so! You are the God who know's Chaia's beginning and her ending! And we believe and trust you that you intended her to live and not die and declare the works of the Lord! We speak life to every fiber of her being! Where there is blockages, create new channels, new veins, new muscle. You can because You are the creator! We thank You now for all that You have begun to do in Chaia's life! DNA BE CHANGED!!! Thank you Jesus for all you have done! And it's in Jesus name we pray! AMEN!!!
On my knees praying for a miracle.
Still praying... for all of you.
Kathy & Bob
I have been following your story for quite some time, and I pray for your family often. Your faith and strength are inspiring. I can only imagine how difficult this journey is, but I hope in some small way it helps a little to know that many people, even total strangers across the country like me, are praying for you and truly believe we have a Father who can and will heal your sweet little girl.
Continuing to send prayers Heavenward and love your way....
Praying for you three and everyone concerned with Chaia's health issues. God is still in the miracle business, that is how I shall pray.
I admire your spirit and your thoughtful posts during this journey.
Sending love your way!
Mama Karen X 2
thank you
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