Today I got to watch my niece Ruby. She is the BEST baby. But she definitely loves to find the most dangerous thing in the house and try to play with it. She somehow even makes common household objects dangerous. Bravo Ruby, bravo.
I am "the mom" to 3 boys and a little girl. Through taking a microarray test, we found out that my Davy girl has a rare chromosome deletion. I have written this out in hopes to find others who have any similiar conditions.
Davy has a microdeletion of 1p31.1-1p31.3. She has panhypopituitarism, a cleft lip and palate, Congenital heart defects(asd, vsd, pda and had a CoArc). She had a surgery for malrotation of the intestines, and a g-tube put in to feed her. She has GERD with esophagitis dysphagia. She is on multiple medictions that need to be given round the clock. Three of those she will need for the rest of her life. To read about her journey start here.