Today's Heart Echo once again said NO coartation. She still has the PDA, but that can be fixed when she is a little older. So we can cross Heart surgery off the to do list. Next up...... Getting this girl to eat. 
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Davy's medical History
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.
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May
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- how does that saying go?
- when Harper met Davy
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5 comments:
That is FANTASTIC news!!!
Best news! I am so happy for all of you!
xoxo
Yea!
Ruth love your blog tonight it made me cry happy tears I thing you need to make it into a book on Davy . I would but this on your blog I try and I could'nt send it I' have learn how to do it agan and agan and so on may one day I'll know how. I lose my spill cheek so holp you can read this I know it is on there some where.
This is from your mom
Ruth you are such a great MOM and have such and beautiful girl and family
The best news I've heard all day!! I hope it continues to be up hill!!
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