Then Wednesday night Ty's alarm for his heart rate kept going low. It was having a really hard time staying above the 40's. We called cardio Thursday and they ordered a 24 hour holter so we got that put on yesterday and he takes it off today but we return it Monday. So waiting to see what that shows.
Then I spoke to the husband of a mito specialist in Atlanta yesterday. We really like what he had to say and talked about Ty etc. It's quite expensive for the appt plus traveling there. We can also do phone and Skype appts too. We would need to be physically seen every 2yrs. But it sounds hopeful to go see her. However, there's a new metabolic Dr at our hospital who sees mito patients. So we are trying to get in to see him. My dh wants to see him and see what he does or says before going out of state. We are also going to discuss it with his pedi this month.
Then our nursing should pick up again next week, yay! And Ty's adaptive stroller should be coming next Friday too. Then school for Ty starts Monday.