Sunday, June 16, 2013

Make No Bones About it...

Well, Chaia's CT came back with some less than stellar news.

It appears the calcifications that caused her heart attack and have been at the center of this medical journey are increasing.

We expected that because she has been on the mend developmentally and showing no signs of increased compromising of the heart, that her calcifications were at least stabilized if not reversing. But they are getting worse.

So the treatment that likely got her on the mend in the hospital and then likely gave her a bone disease that has caused fracturing in various places in her body is now is not working like it needed to.

We've stopped the treatment.

And the next steps are pretty limited.

Scenario One we elect to proceed with a very experimental treatment that will involve Chaia spending a couple weeks in July in the hospital...will involve another CT scan 6 weeks after the treatment begins and if it is working...a surgery to put in a Central Line so she can get the IV treatment each day.

Scenario Two is simply stopping treatments of the disease. And let the chips fall where they may. The best guess here is that eventually her calcifications would worsen and her heart or brain or other vital organs would be compromised.

Needless to say, we feel pretty beat up these days.

But I want to tell you what I see.

Chaia has one of the sweetest, endearing personalities I've seen. She sees pictures of cousins or the picture of our compassion child on the fridge, or hears kids outside and immediately gets a serious face and folds her hands until Shaina or I say a prayer. She claps when we say amen.

Because of her bones, she went from crawling normal to crawling with one leg to now scooting on her bottom. Her velocity in traveling this way is impressive.

She gives hugs and kisses. If she thinks you're trying to take more kisses than you ought to, she shakes her head no.

She sits on our front porch and waves at every single person that walks by.

She rides in the cart at the grocery store and waves and says hi to every single person we go by. And if they don't acknowledge her she just keeps waving until they are out of sight.

She fist bumps her friends. The high five is such a thing of the 90s...2k is all about blowing it up.

The moment she hits her car seat she points to the ceiling of the car. She doesn't stop pointing until you turn her kids Bible song CD on. She then claps between each and every song.

For two months now, she has taken every feed by sippie cup. No more pump feeds. This has been incredibly freeing for her and for us as parents.

She fills her pants...points to her diaper...then holds her nose...

She embodies her name more than anyone I know.

She is a LIFE of JOY.

And even in the midst of bad reports...sleepless nights...hard situations...hopeless scenarios...I believe with all my heart that God is not done with her story. I don''t know how long her story will be, but I know I trust the Author.

And we're clinging to His story...pleading for a third the brings healing. One that brings Ezekiel 36:26 to life.

It is interesting to me that right after this verse on God giving a new heart where a heart of stone once was, that we head to Ezekiel 37...the valley of dead bones...and God brings them to life. Chaia's two primary issues are a stony heart and diseased bones.

We're in the fight of our lives with this little one. She has never been ours. We do not fear letting her go, because we know and trust the one to whom she'd go to.

But we are weary of bad reports and tough days. Weary of tears and heartache.

Circle Ezekiel 36 and 37 with us this week in prayer and ask for supernatural resolve for Shaina and I and for healing, complete and total for Chaia.


Grandma Cindy said...


Yes, Lord. Complete, absolute, and total healing for little Chaia! My selfish first choice is that she would be healed here on this earth, second choice that she would be healed at Heaven's gate. This grandma's heart trusts You, Jesus, to DO the healing, to pick the TIME of the healing, and to choose the PLACE of the healing. You are H-O-P-E. And I rejoice in You! Amen.

drew said...

We will be praying

Amy said...

Believing with all my heart that the giver and taker of life CAN provide miraculous healing to sweet Chaia's precious heart. I am bold enough to plead on her behalf for TOTAL healing and will do so everytime she crosses my mind.

Anonymous said...

We will be praying for healing, complete and total for Chaia. Prayers also for her very caring parents.

Mama Karen said...

The burden you carry has been my spiritual burden ever since I heard of Chaia's story. I have no idea why God chose me to help carry your heavy burden but I do. I will not stop holding up your hands. Just as Aaron and Hur held up the hands of Moses when he grew tired, we hold up your hands. We are ever kneeling to our Father who is the giver of LIFE! We don't know what the future holds but we do know WHO holds Chaia's future. She wins no matter what! I want to be selfish and pray that God heals her physically! This little munchkin has captured my heart. This past Wednesday night I felt the burden particularly heavy. My pastor's wife and I had a brief conversation regarding Chaia right before service. Every song that was sung that night was right on target. I wish we had it online so you could have heard the worship. If I can get a copy I will send it to you. During the worship time, song after song spoke of God caring for his people. I posted one of the songs on Shaina's wall that I knew would minister to you all:

Fear not my child, I'm with you always.
I feel every pain and every tear I see.
Fear not my child, I'm with you always.
I know how to care for what belongs to me.

At that point, my pastor's wife mentioned the heavy burden I was carrying and spoke boldly "God's Got this!!" He has his arms around you, and around Chaia! His love for you will not let Him leave you alone. He knows how to care for what belongs to Him! He knows and sees what we don't. He weeps when you weep. BUT HE NEVER LEAVES YOU! Chaia's story is not over until God says it's over. No matter what the report says, we know THE ONE who can bring dead bones to life. The ONE who called the winds to breathe the breath of life into a dead dry desert and men rose up and lived. I still believe in miracles. I still have HOPE! We love you more than you know!

Keisha Joy said...

aw I hope I run into her at the grocery of those waves would make my day :)

Ben Simms said...

Well said Ben...praying with you guys