Sarah’s sleep saga has continued and evolved in unexpected ways. I had been wondering for a while about trying melatonin for her and I finally reached out to her neurologist to make sure that wasn’t contraindicated based on her anti-seizure medications. The neurologist gave the go-ahead to try her on 3mg of melatonin. I started her on 1mg, and that night was terrible. She seemed to be awake even more than usual. At one point in her calling out about various things to try to get us to come to her, she said, “My bed is uncomfortable. . . ow.” We chuckled at her creativity, even though we still didn’t go in to see her.
I thought that maybe the melatonin hadn’t done anything because of such a low dose, so the next night I gave her 2mg. That was one of the most terrible sleepless nights any of us have had in ages. It didn’t help that Carl and I decided that was the night to put our feet down even more about not responding to her calling out. She was calling or screaming for us for the better part of five hours, at which point Amy got up to ask Sarah to be quiet. Once I realized that Amy was not magically sleeping through the screaming, as she so often is able to do, I got up and moved Sarah down to the basement guest room and I slept next to her for the rest of that fitful night. Apparently, for some people, such as Sarah, melatonin causes frequent waking. So no more melatonin for her. I remind myself of Edison’s perspective, that now we know one more thing that doesn’t work so we are that much closer to finding what will work.
With the hope of resetting Sarah’s sleep cycle and associations with the experience, we are taking turns sleeping in the guest room with her and going to bed at the same time that she does. This is a complete u-turn from saying we won’t respond to her, because we think her nervous system has gotten overly stressed and we need to calm it in a big way. Our hope is that doing the reset in the basement will make it easier to transition back to her bed than it would be if she was with us in our bedroom. This new plan was slightly complicated by the fact that out of all weeks, this was the one with the most extra-curricular things scheduled. Our first official night of being in the basement from the start, instead of a 2am relocation, was Tuesday. That was the night Carl and I went to a Paul McCartney concert (amazing!) and didn’t get home until after midnight! The good thing about this timing was that it gave Sarah and Anna ample opportunity to turn the basement guest room into “Sarah and Granddad’s apartment” complete with a list of suggestions of what to do if Sarah couldn’t sleep. Still, that night was not great. When I joined Sarah, she was making so many trips to pee and waking so often (with a start and trembling) that I thought I would lose my sanity. Remarkably, she was still her usual sparkly self in the morning even if she needed a bit more time to get ready for school.
Wednesday night we took the girls to their first Josh Ritter concert. That was as wonderful and heart-filling as his concerts always are, and the girls enjoyed it despite getting home late. Carl spent the night in the basement with Sarah, and I slept really well in my own bed. It tells you something when six hours of unbroken sleep feels deliciously long. The next night was my turn with Sarah, and it was a bit better but still filled with many wakings, trips to pee, and my own stress about what medical mysteries were to blame and panic about. On Friday, I purchased Sleepytime Tea and the weighted blanket that I ordered finally arrived. Sarah slept relatively well. Last night we repeated the tea and the weighted blanket and it was the best night in ages. Her trips to pee fell within a normal range and she slept for ten hours!!! I am tentatively very hopeful and less stressed about medical mysteries.
Friday night Carl and I had yet another fun event. I didn’t intend for all of these things to be the same week, but sometimes that is just how it goes. We did a Dining in the Dark experience where we ate a meal while blindfolded and we didn’t know what food would be served. I had thought we would be at a table for two, but all of the tables were for six or eight diners. We had a fun table with lots of laughter as we tried to guess what we were eating and not knock over our water glasses. It was a good reminder of what some people experience all of the time and the trust they have to place in others. It was also harder to identify some food items than we thought it would be. For dessert we were served cheesecake with fruit on top. I absolutely knew I ate a strawberry slice, but Carl ate something that he couldn’t identify. In hindsight we are guessing it was a strawberry but because he was expecting something else he couldn’t place it. When he told Amy of his experience, she laughed so much she went from standing to sitting on the kitchen floor, completely undone.
May you experience something fall-downably funny even if you are also dealing with difficult mysteries.
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