Sarah slept quite soundly and didn’t have any of the issues we have been experiencing since July – and of course this happened when we were staying at the hospital for her to have a routine 24-hour video EEG. I am so glad the issues are seeming to magically resolve themselves as mysteriously as they arose, but it also felt a little like taking your car to the mechanic and having the persistent rattle suddenly vanish into oblivion. The results showed no changes from Sarah’s last EEG four years ago, which is great news. Sarah really hates the feeling of the EEG leads being put on her head, so we arranged for her to receive laughing gas and that worked like a charm. The people facilitating the procedure were named Jenny and Amy! I kid you not. Sarah held her picture of Granddad the whole time the leads were being placed. Afterward, as she was still a bit groggy and out of it while we waited for our lunch, all she wanted to do was look at her Granddad and Sarah photobook while snuggling against my shoulder. After lunch she took a nap and then perked up into her usual self. The next morning at 6:30 AM she was very adamant that she was DONE. Luckily the nurse responded to this information by quickly getting the leads off of her head and giving her shampoo and towels to shower and get ready for the day. I dropped her off at school around 9AM so she was still able to go to her job for the day, which was her main concern.
The rest of the week went well regarding Sarah’s sleep, so my fingers are crossed that we are back to normal. She does still call out for us several times once she has been tucked in, but usually settles quickly after we respond. She is back in her own bed, and the basement guest room has been put back in order. We no longer sit with Sarah while Amy gets ready for bed, and so far Sarah is handling it better than ever. Sarah is also back to napping one or two times per day.
Friday night Sarah’s school program had their annual Holly Jolly fundraising party at the football stadium. Sarah was the first on the dance floor, as usual, and before that she even tried to join in the dance performance of another class. She was cutting a rug like a starfish, as she likes to say, and the DJ played “Love Shack” for her.
Part of Amy’s school work this week involved drawing her hand in many different positions. One day she came home from school and one of her stuffed animals was hard at work drawing her paw. I love how her animals look up to her and want to do what she does!
The other excitement for the week was that the girls had a snow day on Tuesday. That was also the day Sarah and I went to the hospital for the EEG so she only got a little bit of time to play in the snow. Amy and her bestie had a great day playing in the snow, doing some school work, and just being together. Carl was away for a work trip so it worked well that Amy could be with her bestie the whole time, including when she came back home to feed our cat (who had not been drawing her paw but rather had been sampling our Christmas tree).
Yesterday we decorated our tree with plenty of Donald Duck ornaments, cat ornaments, and various ornaments that Sarah made over the years at her schools, complete with pictures of her younger self. To make up for the lack of ornaments with pictures of young Amy (because she went to different schools), last year Amy drew two small pictures of her young self, as a personified cat, of course. This year she added a third to represent her current pink-haired self. After decorating the tree we went to a Higgy Friends event where we met some new kids who are wearing braces for scoliosis, and then we finished the day by watching Mickey’s Christmas Carol.
May you sleep soundly, dance like a starfish, and make sure that you have a seat at the table – or spot on the tree.
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