Author Archives: atruerarity

54 photos 6 videos 2 medical documents Some medical documentation for both the chromosome microduplication we learned Daniel has (does not cause arthrogryposis) and some other related chromosome stuff: rarechromo.org/media/information/Chromosome%20%203/3p26%20deletions%20FTNW.pdf ncbi.nlm.nih.gov/pmc/articles/PMC1182094/pdf/AJHGv74p1286.pdf Notable associations of this gene being disrupted are: small … Continue reading →

Maggie is clipping her fingernails in my bathroom, half dressed for the day and still with the night’s tangles in her light brown hair. She’s supposed to be doing chores, but I suppose clipping nails is always timely. Jordan is … Continue reading →

Sleeping arrangements have been non traditional around here lately. I wanted my bedroom back from Daniel (my office is in our bedroom too!) so after 5/6 months, we moved him into the little girls’ bedroom. Several weeks later, Daniel had … Continue reading →

Daniel obligingly showed me all angles of his head for “before” photos and then Carolyn helped document the rest of the process. I am still not sure if this is my favorite cut on him, but I am happy it … Continue reading →

Carolyn at her well visit was in the 50th percentile for her weight and the 70th percentile for her height. That’s pretty typical for her. 5 1/2 years old and about 42 pounds and 3’10”. Maggie was in the 4th … Continue reading →