It's been 12 days since the dreaded 2 and a half hour seizure that resulted in admission to Critical Care at Sick Kids hospital. We were transferred to the Neurology floor and since the doct'rs decided to change his baseline medication, Phenobarbital to Valproic Acid (AKA Valproate), Tommaso's had seizures every other day.
He starts his day with clusters of very short and subtle seizures. They are almost unnoticeable unless he is smiling and he will lose the expression off his face and his eyes will role to one side and the arm from that side will send a quick jerk, kind of like a tremble. Sometimes they become a more troublesome seizure where a body part won't stop jerking and the longest one since we've been on the Neurology floor has been 16 minutes.
Today has been a good day for Tommaso. No seizures today. Well, I counted 4 very small jerks, but no dramatic ones that lasted a long time and needed to be treated.
Tonight, I'm sitting at home with Stefano, his big brother who is letting me help him place some Batman stickers in his sticker book. I love this time with him. Time could stop forever.
Robert, my husband, was kind enough to give me a couple of hours with Stefano. He is staying with Tommaso at the hospital right now. He is feeding him and putting him to sleep and giving him his evening meds. Thank God for his support. It's stressful for him too. It's stressful on all of us. Our family is separated right now, but our strength keeps us together. We have our good days and our low days but we strive every day together.
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