It’s been almost a month since I’ve posted on the blog. Life has been happening at full force. My husband has been away for 23 looong days so far, leaving me to be a single, full-time, homeschooling mom of three wild girls (who have decided to boycott sleep). I. am. TIRED.
That being said, here’s the latest from our world. My oldest has some emotional/mental stuff that we are processing and working through. My middle is just missing her daddy like crazy and therefore acting like a wild, nocturnal animal. And the littlest has fully weaned off of her previous seizure medication and is now relying solely on a once-a-day dose of her new meds, which she is not a fan of taking.
We had hoped that this transition would eliminate the small breakthrough seizure activity that we had started to see, but that is not the case. She has had at least four small seizure episodes in the past month. I say “at least” because that is what I have personally witnessed- most of them come during her sleep, so I don’t know that I am catching all of them. And I say “episodes” because sometimes it is a single seizure, and sometimes she has multiple short seizures over a period of time. The good news is that these seizures have been short and mild, so the medicine is helping in that respect.
Her behavior has improved slightly with this new medication- I’m not seeing as many screaming spells, but I am still noticing a little sensory sensitivity in certain settings, and she is still struggling with interacting with other kids her age (she doesn’t get angry or yell or anything, but randomly hits and scratches for no apparent reason). Oh- and she is napping again! This is a huge praise. She still seems to have disruptive, restless sleep at night, but she is taking afternoon naps again, so that has been a huge blessing.
I have contacted her team at Duke regarding the more frequent seizures- it’s still on average just once a week and they’re small and not requiring medical intervention to stop, but they’re still scary as there is always the fear that they’ll become more intense. And these are new- we made it almost two years with no seizures, then almost another year with no seizures, so the jump to four a month concerns me a little. She has also started complaining this past week of headaches and has told me on three separate occasions that she has “sprinkles” in her eyes (“sprinkles” is her word for anything that is shiny or sparkly). It may be nothing, or it may just be what we have to deal with, but for now I am being “that mom” and bringing it all to the doctors’ attention.
So, that’s what’s been happening over here… I wanted to post an update since the last time I posted I asked for prayers regarding this medication switch. We are always thankful for our tribe of prayer warriors out there!