January 17th, 2010. AKA: Making Faces

Happily Janna's resolution for the New Year appears to be she's decided to sleep through the night on a more regular basis!  Of course after our Neurology appointment in January we upped her Nitrazepam by .2 mls so perhaps she was having some seizure activity waking her up?

Another new thing for the New Year is she's learning to make faces.  I'm not talking about her "poopy faces" or the "yuck I've got something in my mouth and I'm going to use my tongue to push it out" - face.   I'm talking about profoundly sad/upset faces for almost no apparent reason or expressed when the smallest thing happens.  (Like when mama blows hair out of her eyes, she seems not to like that at all.)




Of course this begs the question, when will we see happy emotive expressions?  We've yet to see that elusive big smile or hear a giggle.  It seems such a little thing, yet it really would be a huge milestone for us.
Feeding is still 100% G-tube.  Though her gag reflex has eased up a bit so I can now clean the top front teeth, just past her lips, with her toothbrush without fear of making her lose her lunch.

Developmental delays still abound, she's very good at extensor muscle movements - which needs to be curbed.  When upset her low tone can change to high extensor tone.  Not so good.   She is getting a little better with her head control and gaining a bit of tone in her neck and trunk.  Baby steps - and a reminder that this will be a long road.

On the whole, everything still seems to be moving along.  She's gaining weight well, her bowels move regularly (if with a bit of glycerin suppository help.)  She was tested for kidney reflux and we were fine there as well.  She doesn't have big gastro reflux as much as she used to.  We still get the odd puke per day but it isn't large and it's usually brought on by positioning changes and secretion management although "silent" reflux is still a possibility.

So on we trod up that mountain, we've got some shiny new equipment to help out along the way.  Some of it we need to stop and learn before it becomes part of the routine but I'm sure we'll eventually get there, wherever "there" ends up being.