We got a long-awaited update on Mae Yossell today. Unfortunately, it was not the best of news.
Our sweet Mae’s liver is not functioning well. She is showing outward signs of the progression of her liver disease, Biliary Atresia. We don’t have new medical updates, no labs, no test, no doctors notes, just how she “looks” and what her body is doing. I can not even begin to tell you how hard this is.
We are requesting more information, but have no real hope it will come. Unless there is something dire, blood work and test are not something she has quick access to.
We are pushing through paper work and doing what we can as fast as we can, but much of the process is out of our control. We have to wait on others to do their jobs, for mail to make its way to its destination, and for things to be signed, sealed, and delivered.
We are praying for her body to hold strong, for her liver to function well, against infection, and for the Kasai surgery she had when she was only a few months old to function properly allowing her bile ducts to process bile. The way she is presenting it seems that her bile ducts might be blocked. Her condition could require a liver transplant which she does not have access to in China. Please pray for her and us as we wait.
In an effort to be honest….I will admit I am worried. I wish I weren’t but I am. I need to sit at the feet of the ONE who KNOWS her every need and KNOWS exactly what is going on in every cell in her body. I need to hear His whispers and remind myself that His timing is perfect that He can move mountains, part huge seas, and heal the sick. He is El Roi the God who sees. He is Jehovah Rapha the God who heals. He is Jehovah Jireh the God who provides. He is.
I need Him. We need Him. YoYo needs Him.
A few other things we learned today:
-She is developing “normally”
-She says only ONE word – “momma” – oh my heart. How many momma’s does she have? How many caregivers? How many ladies have been “momma” to her tender heart? Does “momma” come when she cries?
-She is not potty trained – not surprising and I keep telling myself what is a few more diapers???
-She has stranger anxiety – it is so hard to think about taking her away from the only home she has known for most of her life. It is a necessary part of the process of a forever family, but what toddler do you know that would not feel kidnapped by strangers who show up and whisk them away? Tears fall as I think about all she will experience that day.
-She cries IN EVERY picture where it appears someone took her beloved paci away in an attempt to get her to smile. You can bet we will have every make and model of pacifier ready for Sweet Miss Princess to choose her favorite.
-She seems to have gotten a hair cut. Her little crooked hair is too cute!!!! A.D.O.R.A.B.L.E. !!!!!!!!
We will update when we hear more.