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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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9 comments:
That's awesome. Corn dogs to me are the world's most perfect food. Meat, sweet bread and mustard. I will probably giggle about that baconaise later tonight when I can't sleep.
ha those pictures are great. i'm still scared to try a deep fried twinkie because i think i'll have a heart attack from it.
No way. But I'm seriously willing to eat anything right now... being on a diet and all. The corndog pizza looks pretty amazing.
WOW. that pizza looks nasty! i bet ryan and mossi would like it though.
Hey Ruth,
I don't know if you remember me or not. My family is in the Acacia Park ward in Fullerton. I saw you were on Melany Larsen's blog, and I think your stuff is pretty interesting. Anyway, I added you. Hope you don't mind.
Kellie Rowland
ewww. gross. I would never put that in my mouth!
wow that pizza is amazing! Have you seen this blog? http://cakewrecks.blogspot.com/ its pretty funny too.
who eats that stuff. So gross... check out hillbillyhousewife.com, if you like baconaise, you might like this one too.
Ruth-the photo's are, should we say thought provoking. On one hand I say, "never not me!" However when I am really... and I mean really really super hungry, "yep". What would it take for me to start picking at, or even eventually actually start to enjoy, or look forward to after a really really super stressful day. Makes me wonder.. Heather Powers
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