We have an answer… today we learned that Henley has a genetic disorder called Shwachman-Diamond Syndrome. It is very rare and characterized by exocrine pancreatic insufficiency, bone marrow dysfunction and skeletal abnormalities. There is no cure, but we will be doing everything we can for Henley. One of those things started today with enzyme therapy. A new normal for her will be a tiny teaspoon of applesauce with enzymes sprinkled on top before every meal. This will help her body properly absorb nutrients and grow.
We met additional doctors today that will be a part of her care team. We are scheduled to go back on Monday for some more blood work. Hopefully we will get the ok to sneak home for a few days.
Our need for prayer will continue. Prayers that Henley stays as healthy as she can be. Prayers that God gives Kyle and I strength for this new journey and prayers for comfort. God gave us Henley. He trusted us with her and knew that Kyle and I would have the strength to go through this storm. We are so thankful for the blessing that she is to us and the lessons that she is teaching us.
"I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone
It is well with my soul
It is well, it is well with my soul"
