Right now I have no strength. Not even in the mood to think about having strength. Truitt's seizures/twitches are quite frankly eating away at me from the inside out. Each ones drags me down even further. Everyone that sees him points them out, treats him like he's suffering and it hurts me even more. I wish they could enjoy him, not worry, and love him to pieces. Instead, like me, they panic at the first sign of a seizure. That is not the way we should be forced to react when cuddling a baby. It's not fair. I now feel I need to be homebound, not take him anywhere. Keep him home where he is safe and treated like a normal baby.
Even though in reality he is having seizures, what else can we do? Absolutely nothing. It has been six weeks now since this all has started up. And still, no answer from neurology. I finally spoke with the nurse practitioner today that has been following Truitt since he was first admitted to Children's. She was such a big help and made me feel a little better. Just a little. She reassured me that these seizures will not do more damage to the brain but can affect his development if they bother him and get in the way of his learning and playing. Which they do.
She is going to see what she can do, look over what meds he is on, and call me back with a game plan. Since these are such "minor" seizures (if thats what they want to call them) then why can't they be controlled? I am still so frustrated. I feel like my life is at such a standstill. Stuck in torture with no light at the end of the tunnel. When will this nightmare end, I just want to wake up and him be okay. I know he will...but again I have to fight for him.
It's only a matter of time. This is all really testing my boundaries. But keep it coming, I will fight until the end. Nothing is too much when it comes to my son.
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