Beginning Week 3

Today we feel like we are making a little progress, a little backwards but we still consider it progress. We have been waiting patiently to have an expert in Denver review Caroline's case and CT scan. We found out this morning that the CT scan was never actually received in Denver. We were told it was sent two weeks ago, but the important thing is the CT scan was re-sent this morning.
The doctor this morning asked me why I was so nice and wasn't mad at everyone for not knowing how to make Caroline better.  I told him I figured being mad wouldn't make anything better and we are actually very grateful. Caroline is getting better and re-sending the CT scan means progress. The doctor thanked me for our gratitude and patience and promised me he is doing everthing he can for our baby who is a rare case of an already rare group of diseases.

We know that every day is a gift from God.  We also know that we have been asking God to direct our paths as we trust in Him. We even prayed that in our wedding vows. We know God has directed our path here. We have been able to get Caroline back to the same level of support we were originally giving her at home and we have had many spiritual conversations with nurses and doctors. We hear Jesus' heart now,

"Steep your life in God- reality, God-initiative, God-provisions. Don't worry about missing out.  You'll find all your everyday human concerns will be met. Give your entire attention to what God is doing RIGHT NOW, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." Matthew 6:31-34, The Message.

So we wait patiently again uncertain of what this expert will say. If she says it's clear to her Caroline has NeHi, we go home almost immediately back on oxygen and focusing on keeping her well. If the expert cannot make a diagnosis, we move forward with more diagnostic procedures.

Many have asked how they can pray for us:
1. Pray for Caroline's healing. We are totally good with her waking up from a nap completely healed and we know God is able! We also trust God to use the physicians here (& in Denver!) to determine a diagnosis and provide her with the best treatment that allows her to breathe comfortably, stay well, and keep growing.

2. Pray for Us, Jay & Brittany - I (Brittany) have been very blessed with several opportunities to go home or spend time doing other things with Jay and Jett; however, my heart aches in a way I've never experienced before when I have to leave Caroline.  That same heart ache happens when I have to say goodbye to Jett. I know God's grace is made perfect in our weakness and always saying goodbye to one of my babies is my biggest weakness right now. Pray for Jay as he continues to lead our family in two different locations.  What an amazing man he is serving his wife, son, and daughter. Our family is tremendously blessed to call Jay Harley husband and daddy. Pray for his continued strength and wisdom as we all depend on His strength right now.

3. Pray for Jett - Pray that God would guard His mind and heart as his little world has been rocked.  I know God is allowing my sweet baby boy to experience His nearness during this time when mommy and daddy are away.  If you know Jett, you know he is a creature of routine and expectation. What a lesson in trusting God our little 3 year old is learning! Pray God protects Him and teaches him how CONSTANT, FAITHFUL, and CONSISTENT HE IS amidst our ever changing lives and circumstances.  Pray Jett feels loved and safe.

4. Pray for Jane, Jett & Caroline's "JJ" - Jane was here for hospitalization one and has been here for almost the entire two weeks we have been here this time.  She has provided for and loved Jett so well.  Pray she feels near to the heart of God as she so unselfishly serves her son and our family. Pray that God would bless her and Jimmy (Jett & Caroline's "didi").

5. Pray for our family, friends, doctors, and nurses - Pray that the light of Jesus would shine so brightly that He would be magnified and we would be made less.  Pray that He would be made famous. 

"Thank you for praying for me and my family! Don't worry about me, Jesus has me in the palm of His hand and it is so good to be here."  Love, Caroline :-)