I saw the most amazing quote yesterday. It said, “Life isn’t about waiting for the storm to pass…it’s about learning to dance in the rain.” I am big into quotes and analyzing them. This one really spoke to me.

What if Ella’s seizures are the storm? There may be lulls and sunshine peeking through but for now, the storm will always be with us. Perhaps one day it will pass but that is for time to tell. What I do know is that we will happily dance in the rain if weathering the storm means Ella is here to dance with us. We have learned some pretty fancy steps over the last year and a half.

That being said, Ella had a seizure at school the other day, and based on past weeks events I can’t say that any of us were surprised. She was acting differently. More blank stares. More involuntary body movements and way more fatigue. Where she normally has a peaceful nights rest with little dips in her pulse ox numbers and movements, the complete opposite was happening. She was warning us of what was to come and we were on high alert.

I had reached out to neuro earlier in the week because Ella’s school nurse had seen some concerning things as well. We took video, sent it over, and it was decided, based on all the new developments, that we were going to increase one of her medications in an effort to get ahead of anything on the horizon. Not much changed, and a few days later Ella had her first seizure since October. It was short and looked different than any we had seen before but with it came the all feelings and emotions that had been laying dormant for the last six months.

We knew this day would eventually come and honestly, we felt ready for it. The conversations with her doctor didn’t seem as worrisome and having been through it before we knew what to be looking for. More importantly, this time around we had a nurse with Ella, checking her vitals and closely monitoring every move she made. We certainly aren’t seizure experts but we know Ella and we know when something is off. Things felt calmer and I know for sure Ella picked up on that.

I am happy to report that there have been no further seizures since Thursday. We kept her home Friday, with her nurse, and she did great. She still seems to be getting very tired but that could be a side effect from the increased medication. While it was only a small amount, these meds are strong and her tiny body certainly needs time to adjust. We are still getting all the giggles and smiles which tells us that she is fully with us and engaged.

Ella can count on extra hugs, kisses, and cuddles from me this weekend. Baby girl has always had this way of getting us to slow down and take the time to appreciate the simple things. I just wish she wasn’t so dramatic about it!

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