Here are the results for Hannah’s Developmental Assessment of Young Children Summary from Early Childhood Intervention done Friday. Basically, they “test” her on certain behaviors, abilities, etc., and they asked me a lot of questions on what she can/can’t do at this age and also ask it based on the what they have seen in therapy.
Cognitive Age Equivalent – 10 months (at 8-month assessment, she was assessed at 8-month level
Communication Age Equivalent – 8 months (at 8-month assessment, she was assessed at 6-month level)
Social-Emotional Age Equivalent – 14 months (at 8-month assessment, she was assessed at 11-month level)
Physical Age Equivalent – 8 months (at 8-month assessment, she was assessed at 4-month level)
Adaptive Behavior Age Equivalent – 9 months (at 8-month assessment, she was assessed at 5-month level)
At least she is still gaining skills. Dr. B., our pediatrician, warned me months ago that the gap between where Hannah is and where other kids her age are is going to keep getting wider from here on out. I can start to see that now, especially when I see Hannah with other kids her own age and younger.
These results, along with the NIH’s neurological examination impression that Hannah is at a 4 – 6 months level neurologically at 11-1/2 months, definitely shows the obvious affects this disease has on her. This is, by definition, neuronopathic.
The only positive out of all of this is that Hannah doesn’t seem to know any different. Her skills truly are scattered, all over the place. I mean, she still can’t get to a sitting position from a lying down position yet she can stand and hold on to a walker for 10 to 15 minutes, even just using one hand for a minute or so while she plays.
The next assessment at 16 months is going to be very telling in terms of progression of her disease. It is starting to make sense why both Dr. Schiffmann wants to see her back in 4 months and the team at the NIH wants to see her in 4 to 6 months.