Hi, my currently 7-month-old baby girl has a small deletion of 3p25.3 as well as a large deletion of 3p26.3-p26.1. Her features currently include feeding difficulties (slow eater with small/erratic appetite, reflux); some hypotonia in the neck area (affecting eating, head control for gross motor skills, and communication); and developmental delay. In terms of delay, she has sometimes rolled over by herself in her crib at night, but she cannot or will not bear weight on her arms to "push up." Her head control is still iffy at times. She has always HATED tummy time--screamed bloody murder and cried real tears--in any format, even on our chests or laps. As a result, she has developed some plagiocephaly and will wear a helmet for awhile. She has only just started to babble a little bit, usually saying "oo-la" or "ma-ma." She also has milk protein intolerance, although I'm not sure if that's really a result of the deletion as it is not mentioned in Rarechromo.org's brochure. She was born with a very small omphalocele and VSD, but these were ultimately of no long-term concern. She has an anomaly of her left optical nerve, but the neuro-ophthalmologist considers it to just be an anomaly so far and nothing of consequence; her vision is good for now. I am still waiting to see the geneticist, neurologist, and audiologist. She is currently receiving physical therapy and speech therapy and being monitored by a gastroenterologist and dietitian as well.
I am wishing you all the best on this difficult journey. Feel free to message me at any time.