A New Direction

So Chaia is on the verge of celebrity status at the Cleveland Clinic...for two reasons. First, the nurses and respiratory therapists are obsessive about her long eye lashes.

Second because they've never seen anything like what they are seeing in this little one's body.

General Arterial Calcification in Infants (GACI).

That's the diagnose. Google hardly knows what this is. And the same goes for the doctors.

Chaia is one of 180 known cases of this genetic disorder...in the world.

Basically her arteries are calcifying and not working the way they are designed. Her heart was the first place of calcification and it is happening a little in her stomach as well.

The good: diagnosis answers a lot and helps us focus in on one thing rather than guessing at a dozen things. Also, it is a bit of a miracle that the geneticist at the Cleveland Clinic would be able to hit on something that is so rare. Also good is the fact that there is a treatment (which we've started) that has been successful in reversing the calcification and allowing a long and healthy life.

The less than good. Survival rate if untreated is almost nil. Doctor said that we are lucky that she made it out of the womb and that most will die by 6 months without treatment. Chaia's heart has suffered significant damage in this journey. It is unclear to this point what parts of her heart are 'dead' and don't function anymore versus what parts of her heart are 'hibernating'. The head of cardio shared that some interesting new studies have shown that hearts that have been deemed 'dead' or non-functioning, have actually in some cases been alive, but in a type of low functioning, barely evident way in order to recuperate and heal. Especially in an infant, the potential for rebound and restoration is present. If the heart has suffered too much, then we begin discussion on heart transplants.

So we know some ways to pray...I ask for you to join me in a 5 finger prayer. Just hold up one finger for each prayer to God.

1. Thanksgiving that God would deem us worthy to endure a trial such as this and that we would seek with Joy to allow perseverance to complete its work.

2. That Chaia's heart would de-calcify and that doctors would drop to their knees in awe of the healing that God has done.

3. That Chaia's heart would drastically recover and all would point to the glory of God.

4. That Chaia's other vital organs would be untouched by calcification.

5. That Shaina and I could find hope. The outlook is hopeless apart from a God who raises dead things back to life.

I wrote a song awhile back about what God did in my life through my dad's heart attack and passing. The lyrics are appropriate.

Chorus:
Out of death
Comes Vibrant Life
Out of death
You Make all things right
Out of death
Victorious Light
Out of death
You call us your bride

Bridge:
Breathe your breath on us O Lord
These dry bones need to be restored

End of the song:
You make our dead hearts beat again.
You make our dead hearts beat again.