Sunday, June 28, 2015

Happy Birthday, Mira!

Mira turned 10 years old today and frankly, it hasn't really sunk in yet. Over the past few weeks, I have been going back at looking at her pictures and reading old posts, which brings back a flood of memories, both good and bad. It's hard to believe that she has been battling seizures, nearly every day for almost 10 years and that we, as a family have been on this journey for as long.

There is no denying that birthdays are always difficult. All of the scenarios and questions that spin through your mind, most of which are pointless to ask yourself, but it's unavoidable at such a milestone. What is she never had seizures - what would her life be like? How different would our lives look? Can Mira understand us when we are talking to her? Will she ever be able to communicate? Will her situation ever change? I cannot help but imagine the 'what if' scenarios and not just on her birthday, but today just compounds all of the wondering and questioning.

Unfortunately, Mira had a pretty rough birthday. She started off having a huge tonic-clonic seizure about 8:30am, right after breakfast. While not unusual for her to have a seizure early in the morning of course, yet what was atypical was what happened afterwards. About an hour or so later, after a long post-ictal period/nap, she woke up and had another 'event', which basically looked like another big seizure starting to unfold. Not a full-blown seizure, but definitely something seizure-related. Her arms stiffened, her breathing stopped and/or was altered, and her feet turned inward while her entire body went rigid. She had a handful of these episodes over a 45 minute period.

We had decided to go out for lunch, as Auntie Aura and the boys were in town, so we packed up the van and headed out. Mira again had another 2 or 3 of these episodes in the car on the way. About another 45 minutes later, while we were partially through the meal, she started having these episodes, repeatedly, closer and closer together. Earlier in the morning, they were about 15-20 minutes apart, but as time went on, they were happening every 30 seconds. It was at that point, we stopped, packed up early and went directly home. She continued to have more clusters of episodes on the way home, which was enough for us to feel like we had to break the seizure cycle with Ativan (Diastat).

Before I started writing this post, I had to go back and determine when the last time we had to administer Diastat and as it turns out, it was almost 8 years ago. This clustering of seizures, one on top of the other, is something we have not seen since then either, which is why we felt it necessary to break the seizure activity. When we called neurology the last time this happened 8 years ago, they told us it sounded like a complex partial status seizure, which from what I remember, was identical to what we saw today. It was disconcerting then, as it was today.

Of all days for this to happen, it had to be today. The Diastat completely knocked her out for most of the afternoon. On a positive note, it stopped the clustering and all of the seizure activity. We didn't see any seizures the rest of the day or this evening. Of course the terrible part is, this was how she spent her 10th birthday.

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