Technically, it is Thanksgiving day.
I have to admit that I have been pretty shaken up by this whole “lots of seizures” thing. Especially when I was looking through my three cellphone photos of the EEG and found one that was completely filled with seizure activity for that period not just a quick blip.
Last night, Hannah woke up around 2 am and stayed awake until about 4 am. Now, I know it wasn’t her movement disorder that woke her up, it was the constant twitching from the seizures. The worst part was when I finally got her back into sleep mode and she was laying in my arms, she was dozing off and she started the muscle twitches again.
I wanted to cry. My baby girl was having seizures right then and there…in my arms. There was nothing I could do to stop it. Then I felt so incredibly bad for her. I can’t imagine what it must feel like? Does she feel them? I hope she isn’t in any pain or anything.
Then I started feeling guilty for doing this to her. I mean, seriously guilty. Probably moreso than I ever have before.
I walked downstairs after I woke up this morning and saw Hannah playing with her nurse. I felt that overwhelming guilt again and just had to cradle her up and smother her with kisses. She grinned hugely, and she melted my heart like she has done so many times.
December 3rd can’t get here soon enough when we see her neuro regarding the results. I only pray that we can get these seizures under control somehow. Perhaps we have been medically concentrating on her movement disorder so much that we have been focusing too much in the wrong place? But then again both Klonopin and Keppra help control seizures. However, Haldol decreases the seizure threshold. Have we been playing seizure tug-of-war with her meds?
I know, feeling guilty isn’t healthy. But the last thing I want is for Hannah to suffer in any way whatsoever. Delays are fine, she has already compensated with her eye movements, and she has gotten used to her Gtube and Trach. But with those she is not physically suffering.
Seizures are another story. Put things into a whole new perspective now. I have actually found myself scared that I am going to lose her sooner than later. I haven’t felt this way since this summer when she was hospitalized. But now I can’t seem to shake this fear.
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