48,XXYY syndrome/Intro

ravensfan0716

My 11 month old son was a 33 weeker twin. Ended up getting RSV in the NICU-ENT saw him-diagnosed small chin & jaw, upturned nostrils, sent blood work for genetic testing, came back with 2 extra sex chromosomes (one extra x, one extra y). The little guy ended up on a vent hospitalized for 3.5 months. In October, he had emergency neurosurgery for hydrocephalus after noticing a bulging soft spot. Since he's been home, he's made great strides. He started sitting up about a month ago and took his first few bites of purée this week! No where near rolling over or tolerating tummy time. Getting PT/OT weekly. We love him more than life, but I still find myself grieving over the loss of what we had expected. It's hard to say what's attibuting most to his delays- his chromosomal abnormality, his prematurity, or his prolonged hospital stays. I can't seem to find any other families to connect with online with XXYY boys. I find inspiration in reading all of your posts

lemen99

Hugs and prayers to you!  I'm a preemie mom and that is so hard, I can't imagine throwing that in the mix as well.  I hope he continues to thrive with therapy!