11/16/16Talia's condition as of today is more challenging to us mentally than it is on her body physically, although that will soon change. I though it would be helpful for me at a later point to look back and remember where she is at today.Talia's body is weak all over, she barely moves throughout the day. When she is most stimulated, she will gently kick her legs or slowly raise her arms. Sometimes in her crib as she wakes up I spy her grabbing fistfuls of her voluminous hair and almost swirling it around in her finger. Her hands are perpetually clenched is tight fists that I can coax open with a gentle graze of my finger. Her toes are perpetually pointed, she's a ballerina in her own right. Her arms and legs are almost always completely straight, sometimes locked in that straight position, unable to bend because her brain can't figure out the right signals to send. Her head never rests centered on her neck, instead flopping from one side to the other or resting completely back, looking up towards the sky in continual wonderment. Her eyelids are ever drooping giving her the appearance of continual sleepiness.Her only unhappiness comes when her weak body is asked to make a bowel movement, the act of which is so difficult for her, her whole body convulses. Given all the weakness in her body, one might assume she'd be angry at all the things she can't do, but the truth is-she has no idea of what she is "supposed to be able to do".She is content, the way a baby is content in those first few months when they are simply allowed to be enjoyed without needing to be "trained" or watched for each minute milestones. If only I could be so content watching her, letting her be. Instead I monitor her, not for milestones of her advancement but of clues to her decline. Her eyes sometimes roll up to an unnatural degree. I can bring them back down with a gentle stroke on her nose, but know that someday those eye movements may be a sign of seizures. Her eyelids sometimes blink independent of each other, like a defective robot in an evil movie. Talia doesn't seem to notice my analyzing, seems unfazed by her fault brain signals, and so I move on too.Talia's most active time is when she sits in her high chair and I feed her. Her hungry mouth still knows when to open and her jaw still knows how to chew. Most importantly, since this is what I monitor the most, her throat still knows how to swallow. Most of our day is spent in the high chair trying to get Talia to take in calories. Yogurt and applesauce are clear favorites, as are graham crackers and cookies. She expresses her clearest opinions when presented with food she finds unappealing. Green mashed things, those horrible baby food meat dinners-life's too short (mine, not hers!) to try and force her to eat those! I enjoy mealtimes with Talia, they are a brief moment of interaction, however transactional, where we are both contented at the end.
A snapshot of Talia