For those of you who do not know, Susanna has neurofibromatosis, a neurological tumor disorder.  She is 7 months old now and up to 14lb, so still gaining, although slowly.  She has 23 cafe au lait spots.  She has shown some signs of kidney problems.  She might have a growth on one of her kidneys.  They are not sure.  They are doing regular renal bloodwork to check kidney function.  They want to thread a tiny camera through her thigh up to her kidney to look at it internally, but she's so small that the risks aren't worth it at this point.  Having a short stature and abnormally large head are very common with neurofibromatosis.  She's already developing those characteristics with her length at 10% and head at 75% on the baby growth chart.  She is developmentally behind now in a few areas.  She is continuing to have problems with pooping often enough.  They did two abdominal x-rays in her last doctor visit and ruled out obstructions, twists, or distensions of the bowels.

 

On a positive note, she is just the happiest little baby ever.  She's almost always smiling!  She is such a precious joy in my life.  She's got 6 teeth already, more than any of ours have had this early.  She has started eating some solids and so far her favorites are bananas and oatmeal.  Nursing and snuggling are her two favorite activities. 

 

Love, Dawn