I took Susanna in for her next check-up at the NeuroFibromatosis (NF) Clinic at Children's today.  Here is a recent photo of her:

The visit went very well.  Her spine is nice and straight.  Her legs aren't showing any bowing.  They didn't find any signs of tumors.  Her vision looks good.  Her blood pressure was good.  She definitely has over 30 cafe au lait spots.  She has a secondary sign of NF also - she now has auxillary freckling, meaning spots in her underarms or groin area.  In her case, they are in her left underarm.  Her height is in the 25th percentile, weight in the 50th, and head circumference in the 98th.  They said that is definitely still within normal for NF patients (you often see short stature and large heads) but if her head size goes off the growth chart, they'll want to do a brainscan to make sure that it is not a brain tumor causing the gain in head size.  They were delighted with her weight and said that she's definitely lost her failure to thrive status.  lol 

They were pleased that she is receiving weekly physical therapy through Early Intervention, as she is now delayed about 6 months in gross motor skills.  She cannot get into a sitting position on her own or hold a hands and knees position or those sorts of things.  She also has language delays and they would like for us to immediately add speech therapy for her.  They said that if she were otherwise normal, a wait and see approach would be fine, but with the NF and the high rate of learning disorders with it, we should start therapy as soon as we see a delay.  I learned today that it is possible she has apraxia as she has both gross motor and language delays.  It has a high correlation with NF.  However, it is also possible that she has the two delays independent of each other.

She'll go back in 6 months for her next check-up.  Thank you to all who are praying for her!

Love, Dawn