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.
6 comments:
haha poor little guy. maybe i should hit myself in the face to get some angelina lips.
K, off the subject...but you seriously have beautiful children!
Hysterical.....there is never a dull moment in your house! So sad...but so cute!
lol! you and your adorrable real-life stories.... i think i'll start using your evil plan with my 2 battling bebes!
His lip started bleeding last night...I thought he got his fat lip while I was babysitting. I'm glad it didn't happen on my watch.
Love your Evil Plan. And love Harper's fat lip. Was it seriously retaliation by a sibling?
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