Chaia wins when we kneel. Please don't stop.
Thank you all for fasting and praying today. It was a grueling day. Here is a quick update.
Chaia greeted us in the morning with her bright blue eyes and some smiles. God seems to infuse His mercy right when we need it.
Tests and Teams galore today. Infectious Diseases, Neurology, Cardiology, Palliative Care, Social Work, Endocrinology, Genetics, Behavioral Therapy, etc.
Here's what we know. Chaia's heart is in rough shape still. It has been badly damaged through the heart attack like experience she has endured. One of the key numbers they test in blood work to monitor heart failure is called BNP. Normally this number is under 100. When Chaia arrived at the Cleveland Clinic, her BNP was over 4000. The cardiologist we spoke with said she has not ever seen a BNP that high.
The good news is that that number has dropped significantly to 1600. Still very high, but heading in a healing direction.
No transplant lists at this point. We found out we will be on a 'wait and see' approach with her as the Generalized Arterial Calcification in Infants is treated slowly over 4 weeks. It is remarkable to see how the world is collaborating for this little one. Consultations from Germany and Australia have informed our dosage approach in treatment. The cardiologist mentioned that Chaia has become the doctors' sweetheart at the clinic. The rarity of this disorder and her enormity of cuteness has won the hearts of the cardiologists in particular who have "done extensive research and reading to figure out how to save her life."
This is more marathon than sprint at this point...and let me be honest...I hate running. Shaina and I are very weary and this is only the beginning of a potentially long walk toward recovery.
But we continue to trust and we desire nothing more than God's glory. If it is instant healing, God have your way. If it is gradual healing, God have your way. If it is time to let go, God have your way. Do not pray that God simply get us out of pain and suffering (and believe me, this is agonizing.) But pray that He would take us into deeper waters. I don't want to come out of this without God completing the work He desires in Shaina, myself and Chaia, as well as the rest of the world.
My hunch is that it may become harder to pray in this marathon. But we are battling for this little girl's life and we are desperate for you to hold our arms up like Moses so that the battle can be won. Please keep the words of encouragement, Scripture and prayer coming full throttle.
The world is literally watching this little girl's journey. God let your glory reign.