Last week we made our second trip out to Kentucky, with a stop on the way out in St. Louis to visit my family for the evening. Embarking on a road trip or spending any significant amount of time in the car with Mira is always a gamble. We never know what the highway will bring. During our neurology visit the week before, our neurologist recommended a small dosage of valium while we were on the road, to help ease Mira's anxiety in the van. After our first trip out to Kentucky last summer, I think all of us lost a little bit of our collective sanity, having to listen to Mira's crying for a solid 225 miles on the out to KY. It was painful, thus we felt a little more empowered this trip, having some ammunition before we embarked on a 9-10 hour excursion in the car.
We weren't very optimistic heading out toward St. Louis, as we didn't get 3 miles from the house before Mira started crying. We stopped, fueled up, and gave Mira a dose of valium, which didn't seem to do too much - she continued to cry off and on for most of the ride. Tolerable, but certainly not ideal. We spent the evening and headed out early the following morning, with 4 hours under our belts and another 5+ hours to go. Mira did a little better, but ended up crying, somewhere around Louisville, and continued pretty much until we got out of the van. Once she was inside and able to stretch her legs, she was in a much better mood. In fact, she was extremely happy for the rest of the afternoon.
However, for the remainder of our visit, Mira was very irritable. Every day, Thanksgiving included, she was just not happy and nothing would keep her happy for more than a few minutes. Just one of those roller coaster weeks. We had to split up on a few outings each day - I ended up taking Mira back to the house on several occasions, while the rest of the crew went out to lunch. Mira would have not lasted more than a few minutes in the restaurant, which makes a stressful outing for everyone. She wasn't much happier once we were back out of the van either, so we were never sure what was really bothering her.
Regardless, we had a pleasant Thanksgiving break, loading up the van early Sunday morning to head back to KC. This being only our second attempt at driving straight through for 9+ hours, I was frankly cringing at the prospect of having Mira's irritable temperament continue the entire drive back. Much to everyone's amazement, Mira went an entire 600 miles without making a peep! She was truly amazing - she was wide awake and didn't sleep a wink for the drive, but rather was content just looking out the window or just happily enjoying the ride. She did break down that last 20 miles, but I was in shock that she went solid for almost 9 hours without so much as a whimper. We did give her a dosage of valium before we left KY and another about 5 hours into the drive, which seemed to do the trick.
Unfortunately, she has been a train wreck most of this week - she has been irritable every day since, finally settling down today and has become extremely sleepy this afternoon. With all of the travel and visits, her sleep patterns have been thrown off and I think she is just worn out. Ironically, in terms of seizures, we haven't seen any the last week to ten days. She hasn't been having any myoclonics in the morning and certainly no tonic-clonics to speak of, at home or at school. With all of her fussy days, we typically see a spike in seizure activity, but again, it has been eerily quiet in terms of seizures since my last seizure post back on November 9th.