Thursday, March 1, 2018


It was at some point in April 2015 where I became so used to watching seizures occur that they lost their "wow factor".  Sonzee was only 2 months old.  I have seen so many varieties of seizures, so many different presentations that it takes a lot to make me lose my composure.  The first time of a new seizure type it usually takes me a quick second to adjust, but then like becoming comfortable with any new area of parenting, they too just become the normal.  We have been used to 10-15-minute seizures since August, some have needed oxygen, thankfully the majority do not.  This past weekend however, was the very first time Sonzee had a seizure longer than 15 minutes.  We gave her rescue medication and expected her to stop seizing, but it was not until 7 minutes later that she finally came out of it.  I admit the thought of dialing 911 crossed my mind, but I knew she was fine and I knew she would stop, and she did.

Yesterday was the first day this week I had not received a phone call from school telling me Sonzee had a seizure.  I was honestly a little surprised considering she had 2 within 2 hours of each other before school, but when I walked into her classroom I saw her nurse and teacher standing next to her and I said, "I was thinking it was odd you had not called me yet".  She was already a few minutes into her seizure when I gave her kisses, rubbed her arm, and started to talk to her teacher.  Her nurse was doing the timing and we were just waiting for her to stop.  Minutes continued passing by, her nurse letting me know every so often where we were on the time.  A mom friend walked by the classroom, we spoke for a little, and Sonzee continued to seize.  I met her school occupational therapist and she and a couple of others gathered around to learn about Sonzee's seizures.  The clock ticked on, 13...14.... 15....I started to take out her rescue medication and at 16 minutes I told her she had 10 more seconds before I had to give it to her.  10...9...8...7...6...5...4...3...2...1....rescue med given.

Then we waited.

We all continued to talk about her seizures and then finally 7 minutes later it stopped.  We were finally ready to head home and Sonzee agreed because she went from seizing to being rescued to playing with her hands.  I mentioned to her nurse, "Only Sonzee could go from having a 22-minute seizure that required rescuing, to playing with her hands as if nothing happened".  I do not like that her seizures are like the "boy who cried wolf" and it makes me a little sad that they do not all impact me, and that I can sit around for 20 minutes while she seizes carrying on as if she was watching Octonauts on T.V.  I know I do not have the psychological capabilities of entertaining each one like it won't be happening 3-5 more times each day, because they will, they do, and this is just part of her life, but it just hurts that this is where things are at.  

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