I forgot that today was Sunday! Since it is a long weekend, today really feels like Saturday. Thus the later-than-usual update.
This week has not involved a great amount of sleep. Sunday night after dinner Sarah wasn’t to have any food. After 3am she wasn’t to have any water. I slept lightly, on alert for sounds of her getting a drink. This was in preparation for sedation for an 11am placing of the leads for an overnight EEG. A few years ago when Sarah last had an EEG it took two of us to hold her down for the lead placement. So I requested that things be different this time around. The doctor was planning full sedation for half an hour but I explained that I thought partial sedation was an option. She said they could start with laughing gas but place an IV port in case they needed the full sedation. Sarah did beautifully with the laughing gas and needed nothing more. By the time we got to our hospital room and she was allowed to eat, it had been 11 hours since she last had water and 17 hours since she last had food. As you can imagine, she was very hungry. Since it takes about an hour for food to be delivered from the cafeteria, I was glad I came with yogurt and snacks.
Sarah and I had a peaceful day at the hospital with unlimited iPad use until the battery died because the charger I brought wasn’t big enough to keep up even when it was plugged in the whole time. The break from technology was nice. Sarah and I snuggled on the sofa and made a paper replica of a Laughing Bag. Years ago we had a yellow laughing bag that laughed when you squeezed it. Having laughing gas made Sarah think of the laughing bag. In customary Sarah fashion, she absolutely had to have it, but was fine with a paper version stuffed with paper towels and with the laughter supplied by me.
At night in the hospital Sarah had several times of waking suddenly with a start, sometimes sitting up. She does this at home on occasion, sometimes with such velocity that she falls out of bed. I’m glad it happened during the EEG and I could press a button to get it noted on her chart. I’m still waiting for the results. These moments don’t seem like seizures but I wonder if they are related.
Every night since the EEG she has had many such moments. Since Carl was away for a few days, Sarah slept next to me and I had many times of going from a sound sleep to saving Sarah from falling out of bed or settling her, my heart racing each time.
On Tuesday I kept Sarah home from school because I thought she might be tired, even though we were home by 7am so she could have been to school on time. Anna came to be with her while I taught a class. Anna is one of Sarah’s favorite people in the world. As a testament to how tired Sarah was, she napped while Anna was at our house.
Sarah’s school days went well and she even was in good spirits on Friday when a bus scheduling snafu meant she got home two hours late!
Amy had a good week too, and my absence for a night helped her appreciate all that I do.
We are camping for the weekend. Last night was very rainy but we stayed snug and dry. I made muffins to assure that we had plentiful snacks. A good thing too because Amy has eaten 8 today! It has been abundantly clear at times how everything is wrong with the world when Amy is hungry (but doesn’t feel hungry) and all is right with the world after she has eaten. Sarah can be similarly hangry, as can I. Muffins to the rescue.
Today a new family set up camp next to ours. Sarah promptly went over and began a connection. Both girls have been crafting with the other kids because luckily that family brought enough to share. Note to self for the future: pack craft projects! I love how Sarah initiated doing an activity with the kids, even if it was parallel play.
Despite the rain we have enjoyed time at the lake beach at the campground. Amy is a mermaid and swims until she is too cold to continue. Sarah didn’t swim but enjoyed the large umbrella we rented.
I hope you are all well and have slept soundly.
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