it is only 10:10 and Jaxs is asleep. First time for everyone... - TopicsExpress

it is only 10:10 and Jaxs is asleep. First time for everyone... at least lately. Usual bedtime 3a and i know that is impacting his sz activity AND, that damn plastic bag the DME company put on the hospital bed. What a way to brew a fever and elevate the body temp. Not good when you have no internal regulating system. So, what an interesting way to discover a bag on the mattress with the EMTs and Medics..... Still sz free since airflight and calm day. Tomorrow I am expecting it to be a nightmare. Speech has come back again today and he still loves his Barney and his books. So predictable and glad he is sleeping. Maybe I will get some sleep tonight too. And, you know you are a Dravet Mom when you know the channel line up and stations at the hospital better than you know your own home satellite channel line up.

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