Friday, February 24, 2017

Friday bullets, Feb. 24, 17

Not my most productive week, but we've made it to the end.

  • I think we might have hit upon a seizure medicine that could actually work... for both girls. And it's the same medicine. The benefit is that we are only giving it at the onset of seizure behavior so neither have to be taking it full time. Of course, for H. who does not have an aura (a warning sign that a seizure is coming), that means she has to go through one seizure before we can start the medicine, but it is a significant step up from then having a three day cluster of seizures. During the seizure clusters, her intellectual functioning is not at its finest, so we live between a rock and a hard place with her. Now, the terribly ironic thing about writing this is that in the middle of it, H. had a small seizure. (R. is bizarrely attuned to H. and can notice a seizure before anyone else. Hypervigilance (which she has in spades)? Something else? On the good side, it means we have another trial of the medicine. It's a work in progress.
  • In other neurological news, R. has discovered a new trick. She has learned that she can blink her eyes really fast and has been playing around with that feeling a lot. For a child who never wants to open her eyes and engage her world, this seems like a step in the right direction. Since her use of her eyes seems fairly infantile, watching her start to explore her world as a baby would is kind of exciting. It means that progress (in the right direction) has started. 
  • I'm on a neurological roll, so I'll move on to what I'm reading. Currently I have three books that I'm working on simultaneously: Traumatic Experience and the Brain by Dave Ziegler; Smart Moves: Why Learning is Not All in your Head by Carla Hannaford, and The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk. They are all fantastically interesting and I keep telling J. about each interesting bit. It can be a little confusing remembering which book I read the interesting bit in, though. I think I also need to start drawing myself diagrams of the brain and labeling them to keep track of the functions and places of the different parts. Yes, I'm officially a brain geek.
  • K. has announced to me that Y. is teaching him Mandarin. He came downstairs and asked, "Ni hao ma?" At least this is a question that I can answer correctly and replied, "Hao, xiexie ni." [That would be, How are you? Fine, thank you, for the curious.] He then asked, "Can I have a pingguo?" And how can you say no to a child asking for an apple in Mandarin? I can't.
  • D. is on a reading kick. I know, anyone who knows him is asking me what's new. Well, it's the titles and scope of his newest reading list. He discovered that we had a copy of The Learning Company's course, The Art of Reading and has been consuming it. (I will add this is all completely voluntary on his part.) He then decided that he wanted to read the books mentioned in the course lectures and spent some of his money on classics that (unbelievably) he couldn't find immediately kicking around our house. He read The Great Gatsby this week and walked around the house extolling its virtues and how beautiful the writing was. He has now started Les Miserables. I realize this is not your typical 13 year old boy behavior.
  • Continuing with news about D., he made us dinner last night which was very good. At least J. and I enjoyed it. It was sauteed chicken served on a bed of a warm green salad. He did quite a good job. The problem was that the salad was composed of radicchio, endive, and escarole. These are a bit bitter and the recipe had him create a fairly acidic dressing to balance the bitter. To an adult palate, the combination of bitter and sour was pretty good. Children, even those with fairly adventurous palates, do not seem to enjoy the taste. At least mine didn't... not even the chef.
  • I read the book The Eleventh Hour to the masses last night as a bedtime story. This was not the first time we had read this book; we read it often. What was different was that suddenly three girls (G., L., and Y.) realized that the book was a MYSTERY. [If you don't know the book, it's about a birthday party where the birthday feast is mysteriously stolen. There are clues of varying sorts scattered throughout the book and the story line does not divulge who stole the feast, you have to figure it out.] These three hadn't realized that there were clues, codes to solve, pictures to scour, and that they could figure out the solution. Well, let's just say right before bedtime is not the best time for such a discovery. All three wanted... needed... to look at the book. They had to solve the mystery RIGHT NOW! Well, somehow I managed to get them up to bed, but also had to take the book into my possession to stop the arguments about who got to take the book with them, 'to look at in the morning'. Uh huh. Not my first rodeo, kiddos. This morning one of the first sentences I'm greeted with is L. wailing at me that I had to tell her who stole the feast because she could not wait to figure it out by herself and she needed to know NOW! Good morning to you, too, my dear child. Currently, D., bless him, is working out the clues with the girls because in all the ruckus, he realized he had never actually solved the mystery himself. Let's just say he doesn't like to not know something. Remind you of anyone...?
  • And because I can't stop advocating for her, remember Sapphire? Could Sapphire be your daughter? She so desperately needs a family. Imagine if R. had been able to join a family at such an early age. There is a good chance she wouldn't have to start at nearly 12 years of age, figuring out that she has eyes and that she can make them work. Every day Sapphire spends without a family is a day that she will have to make for later on, when it is much, much more difficult. Please, there is much more to life than comfort, and in my experience, just comfort does not bring the miraculous joy that bringing a child back to live provides.

1 comment:

Erika said...

Speaking of your vast knowledge of the brain, I thought of you when watching a YouTube video about music therapy helping with gait training in Parkinson patients. I was sure that you would be able to explain the "why" behind this therapy, and even thought it might have something to do with the basal ganglia (yes, I do read all your posts...and enjoy them immensely).

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