Day +9

Rachel was having trouble today with her shakiness and jerky movements. These are symptoms of the disease, but yesterday and especially today she was much, much worse. These jerky movements were even waking her up from sleep. So of course it was causing issues whenever she got out of the bed for any reason. The doctors seem to think this stems from the pain meds she is taking, but she can't come off of those yet because of the mouth and throat sores. So they gave her a medicine that she had been taking for nausea that helps with the shakiness and the medicine did help with the myoclonus movements during her sleep and with some of the shakiness when standing and walking. Still hard. The doctors also are going to give her a higher dose of Keppra..she was already taking this pre-transplant. They think this may help as well. This has been a very draining day and had Rachel a little down. This is what she is trying to prevent in the future and now to have it here in the present. She now knows this should just be a temporary set back and she should, once off pain meds and starts gaining her strength, get back to where she was before. On a good note her white blood count was 0.2