We've had another up and down week with Mira and unfortunately, Sarah has been having to do it all by herself. I had to go up to New Brunswick again Monday evening and returned just this afternoon. Hopefully, this is the last extended Canadian trip I am going to have to go on for awhile. I have been having to go to the east coast about every three weeks since last August and it has become extremely tiresome for everyone.
Mira had a fairly uneventful Tuesday (since the kids didn't have school on Monday) but Wednesday was apparently a rough day. The nurse at Mira's school again called Sarah within the first hour Mira was there, informing us that Mira was having a bunch of tonic-clonics in succession. Having to pick Mira up at school early is becoming a recurring theme these past few weeks. Sarah and I are trying to figure out what exactly is going on, as there have been some changes this school year with the nursing staff. The population for kids with special needs has increased because of district consolidation efforts, so there is now a designated nurse just for that area of the school.
Sarah and I feel like we need to revisit Mira's seizure plan with the school, since we are getting called much more frequently by the nurse, updating us on Mira's seizure activity. Of course we want to be notified when there is an emergency or when Mira is having seizures associated or combined with breathing issues (which she never has had in the past) but we feel like many of the times we are picking her up from school (with the exception of her episode last week), she is really just having a typical seizure day. We have never been able to fully control Mira's seizures and most likely, we never will. They are simply part of her day and we expect them to happen. Some days are heavier days than others of course and on occasion, she will have an intense day where she is having multiple seizures, but 98% of the time, she rebounds from the seizures and they are isolated enough to not cause an alarm to go off for us.
We know Mira better than anyone - we know when she is having a difficult day and when we need to intervene. It is difficult for the school to have the same level of understanding with Mira and certainly difficult for us to make a determination what is actually happening, based on a phone conversation. Thus, the safest option is to simply go pick her up. We feel as though this is ultimately what the nurse wants - it gives her a level of comfort to know that she would be better off in the hands of those who know her best. However, it creates a dilemma for us sometimes. For instance, when Sarah went to pick her up on Wednesday, she was perfectly fine by the time she arrived at the school, which was within 20 minutes of the nurse calling her. When Sarah showed up, Mira was acting as she always does, even kicking her feet as they were leaving the school. No clammy hands and feet, no altered state of mind, and no additional seizures from that moment forward. From the sounds of it, all of the seizure activity was probably just part of a typical day for Mira. However, what they are witnessing at school may be something they are not used to seeing, and as expected, the school is taking a precautionary path by notifying us of clusters of seizures or repetitive activity. Again, it is difficult for the school to sometimes assess what exactly justifies a phone call and what is just a 'normal' day for Mira. Regardless, I don't think it would hurt to revisit Mira's seizure action plan with them, so that we all potentially have a mutual understanding and a plan in place. Everyone has the same concern in mind, which is Mira's safety.