Monday, October 3, 2011

Chaia Update

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.


Mary Beth said...

Praise be to God! I amazed at how the world is coming together over this little angel. Your faith in God's will is an inspiration to me and so many. I love you little brother. Although the journey is long and have so many walking with you right now!!! I praise God for the small miracles in the news today and that you got to see Chaia's eyes and smiles. Praise be to God for one more day!!!

Beth Honnold said...

"Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith," Hebrews 12:1
Ben and Shaina, I lift you in prayer for this marathon and pray that the Lord would sustain you through these trials and allow you to see victories along the path! May His glory shine each step of the way! Keep on running!!
Beth H.

beth davis said...

Ben and Shaina, we r praying for all of u and I have otherd in Pa and Indiana praying as well. Love, Bob and Beth

Anonymous said...

Psalm 9:10 Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.

Still praying with you and for you. I know your days seem long and the nights are short, but God is with you in each moment, and so are we. When you are at your weakest, I pray you can feel us lifting you up. Your strength is amazing, and even in your darkest hours, you inspire. God Bless, Tina Detweiler

Mama Karen said...

My church, River Valley Life Center, in Lancaster OH is praying for Chaia. We continue to speak LIFE over her. We also hold you up to the Father as well. We know there is a "BUT GOD" in all of this. We can boldly say right now Chaia's BNP level was over 4000 BUT GOD touched her and they are now 1600. Continue to speak the BUT GOD testimonies. Thank you Jesus for continuing the work you have started!

Anonymous said...

This song has been on my heart a lot lately and I wanted to share it with you. God's faithfulness is truly great and His mercies are new every morning! This is one of my favorite renditions of Great is Thy Faithfulness. Praying with you and Shaina each and every day!
Becky Gross

Anonymous said...

Heard this song on the way to work today
Healing Hand Of God lyrics
Songwriters: Camp, Jeremy;

And I have seen the healing hand of God
Reaching out and mending broken hearts
Taste and see the fullness of His peace
And hold on to what's being held out
The healing hand of God

Jackie Thompson said...

Still praying, keep those numbers improving all the time. I LOVE YOU, Chaia, Ben and Shaina...stay strong

Marcy said...

I have heard of your daughter through Cindy Morris, who is my (late) husband's niece. I can only say, with St. Paul, that "God who has begun this good work . . . will see it through to completion." (Phil. 1 [paraphrased]) God has put your daughter on this earth, at this time, in this place, to touch someone, and only He knows who that is. There will be a miracle here, that I know. Not only will I continue to pray for Chaia to Our Lord, but I will definitely ask His most Blessed Mother to intercede for Chaia with her Son, for what Son can refuse His Mother? In all of the tests and doctors, may God's peace flood your hearts and souls.

Anonymous said...

Even Moses had those come along side him to hold his arms up. Allow others to do that for you all. Let the people that care about you and your family know your needs and allow these persons to care for you all also. Like the nurse who stayed up and prayed and read the Bible and played music with a message all you could get some rest...We are all praying... I also pray for this kind of happening, those who have and do and can help. That is their role in all this, There opportunity to serve the Lord.

kanyiri said...

despite all you are going,God still loves you soo much,thats why you have come this,far.

Anonymous said...

Your faith and understanding is astonishing and very ispirational. You are in our thoughts Thompson Family <3