*if you get my email... skip this post!*
will start by saying that the kids are still doing very well. They have aspects that are doing great and some that aren't so great. I keep thinking of the scripture that talks about how God makes all things beautiful in HIS time and that He works all things together for the good of those that love him.
Right now, Joey is having trouble with weakness and both kids battle the fatigue (more joey than abby) leg pain has played a part as well. Anyways, with testing, notes of observation from the therapists, they are very convinced that Joey has a myopathy (disease of the muscle). We will be doing a muscle/skin biopsy VERY soon. They want to figure this all out as soon as possible to get him on track. Today, he had a series of blood work through out the morning for a metabolic work up. So... we will know some from that soon as well!
At this point, Abby's muscles appear normal on exam. They are going to watch her at this point. She may be having some bone issues that we'll have to get checked out. So... we'll see where this all goes. They are having her see an ENT soon as well. Lots to take in. We are exhausted.
Here are our dates... please pray for us these days:
(all appointments for cinci)
June 25th: Joey has a CT scan of chest. Will be put under for this
June 26th: see GI for Joey
July 3rd joey has sleep test
July 13th: joey sees Pulmonary
Soon to add: MRI of head and Surgery for the biospy of muscle/skin.
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