I don't even know what normal is anymore

Brains are weird. That's all I have to offer you tonight. Though probably to be more specific, the effect of medication on brains are weird.

Today was a better day. There were some blips, but compared to what we had been dealing with, they were pretty negligible. Among the blips, I had moments of being astounded. First, R., being regulated enough to join us at the table for school, was tracing the number '2'. She has '1' down, so I decided it was time to move on. Not only did she do a good job tracing the number '2', but when we got to the bottom of the page where she had to write her own, she did it. She wrote two rows of absolutely recognizable '2's. I was so surprised (and pleased) that I allowed the rare occurrence of letting R. go upstairs to show J. her work. What's even better is that she is remembering the name of the number. (We can go over and over something, then the second we take a brief break from it, the knowledge is gone again. To be able to hold onto the name of something during a trip upstairs is astounding.)

Lunchtime was hard and R. ended up needing to come out to the barn with me while I did the stalls. Doing work and being outside served as a reset and rationality had returned by the time we were done. It's stinking cold out there. Believe me when I say that it leaves little room for any other thought than staying warm.

During the afternoon, I decided that sitting together in the studio while I worked on things and R. colored worked so well yesterday, that we would do that again today. R. was all for it because she loves to color. So I sat and spun. (I have finally gotten a handle on my new spinning wheel and I love it! It can spin much finer yarn than my first wheel.) R. colored. And she chattered at me. (This is why spinning was a good choice of activities since I can listen and respond to the chatter without losing the train of what I am doing.) I mentioned yesterday that in the morning she was remembering all sorts of things and doing some real grieving over them all when it all became too much and her brain shut it down. Today was different. Today she was bringing up the same topics, but not in a disregulated sort of way. We were actually able to have a conversation about them. It all felt amazingly healthy and quite possibly the most coherent conversation I've ever had with her. 

I was fully expecting another dip later in the day. The time before dinner is usually tough and I had no reason to believe today would be any different. But I was wrong. She maintained her equilibrium and was pleasant at dinner. Just a few minutes ago as she was waiting for J. to read to her, she was dancing around here and singing. This is the happy, joyful R. whom we haven't seen much lately. She is now sitting and listening to her bedtime stories, but is actually engaged with what J. is reading. 

I have no idea what tomorrow will be like, but it would be great if it could be a continuation of today. Today was about 48 hours after decreased the seizure meds back to where we were last week, when things were looking good again. It seems to take about two full days to see the effects that will result. This is good to know as I can use that to plan for a few bad days as we titrate back up, but MUCH more slowly than we originally planned. I think we need to sit here for a bit, if only to give everyone in the house a brief respite. 

Because I do plan on continuing the titration to a higher dose. The process feels pretty horrid for all involved, but if it can bring such significant cognitive function, it will be worth it. We have four weeks on increases and we have only completed the first. I am both hopeful and terrified about continuing. Have you ever read Flowers for Algernon by Daniel Keyes? About the man who, though medical treatment, went from cognitively challenged to being a genius only to slowly regress? I can't get the book out of my head at the moment. It feels just a little too close to home I think. 

Comments

Leslie said…
I remember Flowers for Algernon. What a gut wrenching book!

I am glad to hear that you had such an amazing day with R.
2/10/2021 9:24 PM
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