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…
In 2 days I will have a 7 year old
I never believed when people said time flies by, but my tiny little doll sized baby will soon be 7. She’s reading, telling time and knows the days of the week. She knows which therapies she has on what days and reminds us on a regular basis. I don’t know how her future will look,…
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…