Thursday, January 21, 2010


Katie has had the flu/cold for about a week and although we have seen some small changes - I am going to wait to comment about those until she is feeling better.  I want to make sure these changes are not just due to lack of energy.  However, one change I am going to talk about is her lips! Having low muscle tone affects Katie's face (muscles) so her mouth has always hung open a bit and she tends to drool.  One of her doctors (probably the neurologist) told us that when her tone gets better we will see it in her face, I think he meant it might not be so round and filled out - that maybe she will get some cheekbones!  So yesterday, one of Katie's caregivers was here and said to me, "Her face looks different, her lips are tighter!"  I had noticed this too, but wanted to see if she would notice it without me saying anything to her. So I've included a few pictures:  on the top, her "before" (actually taken right before the transfusion) and then one I took today where you can see her pursing her lips.  This is new, she has never tightened her lips like this before, and she keeps doing it.