A ray of hope

R.'s sleep last night was not terrific, but sleep did happen, and she was better today. I am significantly better. J., who is the best husband in the world, changed his schedule to work remotely today (and I am genuinely thankful for this aspect of the pandemic), so he decided he would be on R. duty today. He works out in the shed when he is home, so he set her up with different projects to do while he was working. It went better than I could hope. He got work done, she occupied herself, and I got a much needed break. Respite is an amazing thing. J. said there were a few moments where it looked as though things might be heading off the rails again, but some coaching from him helped to get her back on track. 

At one point, J. looked over at what R. was doing, and mentioned that it looked as though she had made a book. So he wrote down her title for it and she added pictures. Then she wanted to make a second book so she did. J. had left them in the kitchen, and when I saw them I thought someone had raided their baby box and taken things out. It took me a minute to realize these were new creations from R. 

Here they are.

This is her first attempt at making books, something all of my children have done by preschool. She understood the idea of books, that they had pictures and words, the direction they go and where to draw the pictures, and that there is some sort of action. They are pretty decent examples of very early preschool books. 

Is it any wonder that we feel as though we have emotional whiplash from this child every so often? She is so terribly jagged in her abilities, and we just never know where she is going to be on any given day. All I can do sometimes is shake my head.

I also have another theory of why this particular episode has been so terrible and horrible. On a PNES (psychogenic seizures) group, someone posted about hypernatremia. This was a new one for me, so of course I had to look it up. It's essentially extreme dehydration causing an imbalance of salt in the blood which can lead to restlessness (check), confusion (check), irritability (check), and seizures (check), among other things. We already knew that she is pretty perpetually dehydrated unless we are really on top of her water intake. I'll be honest and admit that this is something that can often fall by the wayside during the day. And then if you add in a week at a vacation house when our usual schedule is not happening... I'm wondering how much water she actually consumed during the last week. It would be too simple for this to be the only thing going on, but perhaps it was a contributing factor combined with everything else she has going on that tipped the scale to such a horrendous degree. Even if my new pet theory isn't accurate, it cannot hurt her to make sure she drinks a glass of water every hour or so. 

Life is not looking quite so dire as it was last night. Thanks for everyone's support and concern. Now, a full night's sleep? That would be awesome.