Lola is doing great today. Thankfully we have not seen any more seizures since the episode yesterday. I spent the entire day near her as it was crucial to see if the seizures continued. Sleep last night was not exactly restful as every movement I heard, I quickly looked to see if she was seizing again. But who knows? Maybe it was just one episode.
I guess I was a bit naive about the seizures coming back. I thought because she had responded so well to the medication the chances of her seizing again would be highly unlikely. So I can’t even begin to put it into words the utter shock I felt when I saw her tiny arm shaking yesterday. I am crying now as I write this because these things are that harmful. It is not like having epilepsy as an adult. I could handle seizures if Lola was older. But the type of seizures that I am talking about are just as the definition describes them. . . they are “catastrophic”.
When Lola was first diagnosed with West Syndrome she had maybe one month of seizures (with and without medication). One month. And in that one month, the seizures literally stopped her from developing. This is why when she began therapy, she was 40% behind developmentally. One month and a 40% gap. That is ridiculously alarming. So I know I have a tendency to worry. OK – I worry a lot. But the seizures have the potential to take everything my kid has worked for away. And not just her hard work, but in that 15 minutes the seizure cluster lasted yesterday, it was as if she was not there. It was Lola, but it was more like a shell of Lola. She did not respond to me snapping my fingers and she did not respond to our voices. She just kept looking to the left as if her right side wasn’t working. Can you imagine your kid lying there not being able to respond to you? The sense of helplessness is a feeling no parent should have to experience. What if it hurt? What if she was scared? And I was so convinced that the seizures wouldn’t come back (at least until she was off the medication) so it was just plain awful to see.
But she’s OK now and that’s what matters. She has been quite tired today. Actually I laid down and took a morning nap with her too. The added dose of Trileptal could be in part why she’s been so exhausted. It will probably take some time for her body to adjust to the extra medication. Other than that. . .it was as if yesterday didn’t even happen. She’s smiling, she’s laughing, she’s playing, she’s still the happiest baby you’d ever meet. Today she tried so hard to feed herself a teething biscuit and the best part was every time she would drop it, she would feel around trying to pick it back up. This is another first for Lola! She generally has that “out of sight out of mind” mentality, but she knew she dropped the cookie and she searched for it. Granted when she found it, trying to eat it wasn’t quite so graceful, but the fact that she is trying to feed herself is awesome!
Now Rob and I have been speculating as to why we thought she seized yesterday. Was it too hot in the car? Was it too hot outside? Did she have a fever from teething? Honestly I don’t think any of these things contributed, but we (or at least I) have been trying to pinpoint what triggered them. Rob had been saying that Lola’s vision appears to be improving drastically. Today as he played with her this morning, she didn’t just glance at him as she normally would. She would actually look at him, observe him and watch him as he spoke. Now my husband is not one to brag about much (probably because I always beat him to it!), but he has been talking about her sight for days. So is it possible that the visual cortex is making new neuropathways and that excessive brain activity caused the hiccup? At this point, I think anything is possible in Lola’s little brain. She has been making such improvements at a rapid rate, accomplishing achievements that we were told would take months to hit. I have no idea, but something is going on in there. Not only her sight, but she is making a conscious effort to sit alone, she is making out clearer syllables when she babbles and now when you stand her up (for therapy purposes) her feet are flat rather than pointed. I know these all probably sound like minuscule things, but these are the noticeable changes we are seeing at a rapid rate. It’s as if something has woken up in her brain this week. Or we could both just be crazy and maybe it was just that her Trileptal dosage was too weak for her ever growing body. Who knows?
What I do know is that I’m incredibly grateful that we have not seen any more seizures. I won’t be as naive anymore. I won’t expect them, but I won’t freeze up myself if she has them. I need to be there for her. I need to remain calm and tell her she’ll be OK. I knew motherhood would be hard, but damn I wasn’t prepared for this. I’m trying though. I’ll get myself together one of these days.
Oh who am I kidding?
If I wasn’t worrying about a brain malformation or seizures it would be something else like pacifier use or sleep training.[quote style=”1″]Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body. ~Elizabeth Stone[/quote]