Somebody asked how my daughter is doing. I should probably give an update. She's two and a half now; for those who don't know her situation, she has a rare incurable disease called Alternating Hemiplegia of Childhood which makes her paralyzed on one side of her body at a time for roughly three days at a go every week and a half; as is normal for her condition, she has slower mental and physical development than the norm. Just to be clear to those who don't know, I intentionally have not currently been explicitly asking for prayers for her physical concerns as divinations have been extremely firm, over and over, that it wasn't the right thing to do. More general prayers are fine, though, and that's what I ask for on this list.
She is making some progress with physical therapy, I believe; she has started to be able to stand on her own and even take a couple of steps on her own with far more regularity.
Her out vocabulary is more or less stuck at a couple of words only; "mama" can mean her mother or her sister or even me, and "boo" means any of her toys. Occasionally she seems to pick up a new word for a couple of days but it also seems to disappear quickly.
There is no overall change to her paralysis incidents that I can see. Occasionally she'll go for quite a long time without one, thirteen days most recently; but then again, that seems to get compensated for sometimes by having incidents that "stack" each other. What I mean by this is that when she is coming out of one paralysis incident, she's a little bit more fragile, and having strong experiences, even happy ones-- such as simply her sister playing with her too freely-- can set her off into another one right away, meaning that three days of being paralyzed sometimes turns into five days or even a week.
My biggest fear is that she'll give up on her body and stop trying to move herself around, creating a downward spiral in her physical development of ever weaker rather than ever stronger. This is something I've heard can happen to children with her condition, where they essentially become potatoes who never move themselves around at all. Sometimes she gets into moods where, even when she is not paralyzed, she won't get herself up but asks to be lifted up instead. I really want to discourage that. We'll see how it progresses.
Beyond that though she is a wonderful source of unconditional love. When she is happy, she is incredibly happy and sweet. And funny too! I mentioned her output vocabulary being extremely low, but she understands quite a bit more. It's unclear exactly how much, but, for instance whenever anyone passes gas or even just says the word "onara" (Japanese for "fart"), she laughs and pinches her nose. Of course it's also that we laugh so much too! She has us well trained. :-)
Anyway, that's enough for now. My deepest thanks to all who include her in their prayers.
My daughter's update
She is making some progress with physical therapy, I believe; she has started to be able to stand on her own and even take a couple of steps on her own with far more regularity.
Her out vocabulary is more or less stuck at a couple of words only; "mama" can mean her mother or her sister or even me, and "boo" means any of her toys. Occasionally she seems to pick up a new word for a couple of days but it also seems to disappear quickly.
There is no overall change to her paralysis incidents that I can see. Occasionally she'll go for quite a long time without one, thirteen days most recently; but then again, that seems to get compensated for sometimes by having incidents that "stack" each other. What I mean by this is that when she is coming out of one paralysis incident, she's a little bit more fragile, and having strong experiences, even happy ones-- such as simply her sister playing with her too freely-- can set her off into another one right away, meaning that three days of being paralyzed sometimes turns into five days or even a week.
My biggest fear is that she'll give up on her body and stop trying to move herself around, creating a downward spiral in her physical development of ever weaker rather than ever stronger. This is something I've heard can happen to children with her condition, where they essentially become potatoes who never move themselves around at all. Sometimes she gets into moods where, even when she is not paralyzed, she won't get herself up but asks to be lifted up instead. I really want to discourage that. We'll see how it progresses.
Beyond that though she is a wonderful source of unconditional love. When she is happy, she is incredibly happy and sweet. And funny too! I mentioned her output vocabulary being extremely low, but she understands quite a bit more. It's unclear exactly how much, but, for instance whenever anyone passes gas or even just says the word "onara" (Japanese for "fart"), she laughs and pinches her nose. Of course it's also that we laugh so much too! She has us well trained. :-)
Anyway, that's enough for now. My deepest thanks to all who include her in their prayers.