Some more good news...
I heard from the coordinator for the Medically Dependent Children's Program. Alex was approved at the highest level. We are just waiting on the medicaid application to get through now. We were given a $31,000/yr budget from MDCP for respite nursing care. We could get more nursing from Medicaid. I am looking into whether some of that budget can be used to pay myself since I can't work because of Alex's health. That would be a HUGE blessing.
We also heard from Gayla, Dr. K's coordinator. I should know tomorrow what tests they are planning on doing while we are there. If they want to do the muscle biopsy this trip, it will be done on the 20th and we will be inpatient until the 21st.
I'm sure I'll have more to update later!