Zackisms

The good news is we had the results back from Zack's latest EEG. His new stiff jerk movements are not seizures. Phew. We didn't think they were and thank goodness the hindsight was there to see what we were treating rather than dose him up with a cocktail of anti-epileptic drugs. 

His brainwave patterns show background abnormality (well, yes, he has considerable brain damage) but the episodes he is currently having show no electrical spike abnormality that would suggest seizures, it is more likely a muscle abnormality given his condition.

The bad news. We remain in poo/vom city. Slightly better today, he's only been sick a little, kept all his water and meds down and no code browns. Thank the Lord. 

Agreed plan is to allow this virus to pass and see if his new Zackisms settle down, if not, then possibly an increase in the Baclofen. The Zackisms haven't settled and were quite bad today. We are thinking of requesting an appointment with a neurologist to discuss this new development, I would like to understand a little bit more of what they think it is. I am also hoping that it goes away and stays away for a good while.

Oh Zack's big boy bed arrived. And it is fantastic. He is so tiny in his single bed, so little covered up with his big boy Marvel Avengers duvet. And sleeps so well in it. Yes, sleeps. In bed. So much so, he actually had an afternoon nap in his bed, unheard of in this household. 

He woke up in the early hours last night. I went down to comfort him, but really I just wanted to have a go of his tilting bed. It was very comfortable. Dan changed shifts with me about 4am and I heard Zack laughing and then Dan state, "well, move over then." 

Talking of laughing, I've missed by boy. He's been very miserable but today we had more smiles and a few chatty noises. He's starting to come back. If he can come back and the twitches disappear, life will be good.

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