Poor Zibing has had 11 vials of blood drawn since arriving home, and we finally received some results back yesterday.
To be honest with you, the results were not what we were hoping for.
As her doctors suspected, and we prayed against, Zibing does have a congenital, inherited enzyme deficiency which causes her adrenal gland to not produce what it needs to...in turn causing other hormones to be out of whack.
The bottom line is that she will now have to be on two medicines for the rest of her life, one of them three times a day.
She will also require surgery in the next few months to repair damage done to her urological system because of the lack of treatment for her first 4 years.
They want us to start the meds immediately - like, yesterday. Also, Jas and I will go down to the doctor's office on Thursday afternoon to take a "class" on the medicines, including how to administer the injectable form that we will now have to carry with us, everywhere, at all times, in case of emergency. If Zibing were to have an "adrenal crisis", it would be life-threatening.
As I've researched this over the past months, I was originally assuming she just must not have the most severe form of this problem, or she simply would NOT have survived without treatment for 4 years. But the results indicate that she indeed does have the more severe (salt-wasting) type. And it finally hit me, (I'm a little slow)...the Lord has simply had His hand on her, and kept her safe...until we could get her the help she so desperately needs. I don't usually speak in such flowery terms, but I'm sitting here truly feeling as if we've been entrusted with a precious jewel...and we will now do our best, with His help, to take care of her.
While I admit that it took me a while (and some tears) to "process" these results, I'm praising the Lord for what He has done - and is yet to do - in our family...in our lives...in our precious children.
We appreciate your prayers, and would appreciate you remembering us as we get the medication figured out and started (just to make this bitter pill more fun to swallow, one of Zibing's new pills is apparently very...bitter!)
Oh Joli, I'm sorry you received the news you were hoping not to. The Lord most certainly held your Zibing safe for the last 4 years and He will continue now as well. You all have our prayers.
ReplyDeleteCristy
Praying here in Indiana for Zibing and you all as you begin her medicine. Praising God that she is home with her forever family to get the treatment.
ReplyDeleteHugs,
Janet, Kevin, Ted, Philip, and Elijah
Joli,
ReplyDeleteSo sorry about the news, But like you said, the Lord was watching over her and will continue to watch over her. He kept her healthy enough so you could bring her home to love and get the help she needs, she is very lucky to have you as you are to have her.
This breaks my heart to hear that little Zibing will be on medicine forever. We will be praying for her.
ReplyDeleteI can hardly wait to see how Zibing is used by God. He must have big plans for her. I am so glad that she is home where she will get the meds that she needs. - Kathi
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