Just don't know what to do

Well, R. has slept the past couple of nights, though it is has not been an easy thing to get her to sleep. I am also not thrilled with the amount of pharmaceuticals it is taking to get her to sleep. When she wakes up in the morning, she is much better, and is pretty fine during the day. Then, at about tea time, which is 4pm for us, she starts to wilt. Today, she sat down next to me and fell asleep on my shoulder for a good long while. For a little bit after her nap, she was doing fairly well, and then right about 6:15 or so, her behavior and functioning took a huge plummet, heading back towards the night time crazy.

Part of me wants to say it's fatigue. She is clearly tired by the afternoon, and asking her to take a nap in her bed is a total no-go. It won't happen. This is the main reason I sat for so long on the couch while she napped, so she could get some sleep. If it is fatigue, it was clearly not enough nap.

But the mystery is that for months there is no problem. But with Monday and her seizure and post-ictal behavior, suddenly we are right where we were for the entire summer and fall. I don't get it.

Since it could be more severe anxiety, we have significantly upped the nurture around here. But frankly, she is still a bottomless pit as far as that goes, and it is extremely time-consuming and exhausting. I need to take breaks from it somewhat frequently because otherwise I might just lose my mind.

But here are a couple of pictures that truly show there is something going on. This picture is some tracing that R. did yesterday morning in a calm and rational state. I did not help; she did this all on her own. (Sorry for the poor picture quality.)


Notice that the tracing is pretty straight and the lines all match. It's some of her best tracing.

Here is a picture of tracing she did while disregulated and waiting for dinner to be done. I got out the tracing because she enjoys it and I was trying to get her a little more regulated.


There are no continuous lines and many of them don't meet (and if I hadn't pointed out that her lines weren't meeting, none of the would have.) It is as though two different children did these pages, and truly that is what it feels like sometimes.

It is frustrating and scary. We want to help her, to make her feel safe and loved. But not only can she not communicate what is wrong (and I'm not sure even she knows), I'm not sure she can understand that she really is safe and loved.
_____

And as I've been writing this, her behavior has been plummeting rapidly. I'm afraid we may truly have to go back to the ER tonight.

Comments

Alice Delzer said…
Prayer for you guys and that is really remarkable, the difference in the lines!

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