Tag: 1P36deletion

• About 1P36 Deletion- Why Do I Even Have To Know?

  

                Why Do I Even Know What 1P36 Deletion Syndrome Is?               I never thought we would be traveling down this path. I had severe Pre-Eclampsia at 28 weeks and had my baby weighing only 1lb 11.5ozs and 13 inches long. She was on a feeding tube, oxygen and heart monitor. She stayed in the NICU almost…

  The Dream Girl

  October 4, 2018

  Health, Parenting, Uncategorized

  1P36, 1p36 deletion, 1p36 deletion syndrome, 1P36deletion, 28 weeks pregnant, genetic disorders, kids, medical, micropreemie, parenting disabilities, parenting special needs, parents, preemies, premature, prematurity, She’s not disabled, special needs kids

• I spent 6 years searching for a diagnosis

  

  For my 6 year old. As of today, I officially have one. It was given first back when she was a tiny baby in the NICU but I went into denial. She went through hell for over a year. She was in NICU for 8 months, had 4 surgeries (2 heart caths to close 2…

  The Dream Girl

  December 9, 2017

  Health, Parenting

  1P36, 1p36 deletion, 1p36 deletion syndrome, 1P36deletion, genetic disorders, I love someone rare, kids, Parenting, random thoughts, rare disease, rare parenting reare, rare syndrome, syndrome