I've been vacant from this space for a while, and it's because I just haven't known how to explain the current place we are in right now. Here's the facts of the last few weeks.
When Abraham was readmitted to the hospital after being discharged the first time, he had a whole workup done of labs to figure out why the redness was returning to his rash. After ruling out antibiotic resistant staph, it was found that he had a zinc deficiency. Easily treatable. It was also found that he had fat in his stool, but that could be explained away by the antibiotics he was on at the time. We were told to repeat the test in a month and all would probably be fine.
We got a call last week though that they weren't fine. In fact, they were not fine enough that we needed to meet with a gastroenterologist.
We went to the appointment last Thursday. The doctor (whom I really like), threw out two possible causes. Neither were good. One was Cystic Fibrosis - which he tested negative for on Monday. The other was Shwachman-Diamond Syndrome. He fits several of the symptoms including fat in his stool, not growing in length (he's not even a percentile right now), having a low white blood cell count, and being prone to bacterial infections and skin infections. So he had x-rays done of all his bones and we are waiting on more stool sample tests to come back. We won't hear back until next Monday. A loooong 6 days from now.
Our emotional state varies greatly. We've both had several full-on break downs over this. Most the time we just feel like we're getting by. I don't even know how to pray right now, but have found much comfort in listening to hymns.
The one prayer we keep repeating is one that mirrors what Christ prayed in the garden preceding his death.
Lord, please take this cup from us. We don't want to drink it. It's bitter. It's hard. It feels like too much to bear. Not our will though Father, but yours be done.