Born Oct 13, 2014. Diagnosed around 3 weeks old through genetic blood tests. Deletion type. NG tube used for feedings, pulse oxygen monitor, and supplemental oxygen at night. Growth hormone. Glasses. Ankle braces/ supports.
Now over 1 year old, can sit up when put in sitting...does not crawl, or stand or walk. Looking back she couldn't hold her head up at 6 months...so in the last 6 months she has come so far.