Five days left of clefty. I am taking a gajillion pictures of her. I don't ever want to forget this grin.
Is it me or is Miss Davy getting some junk in the trunk. I think silver Lycra shows it off beautifully.
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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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21 comments:
ah yes! i finally got in before you had a kajillion comments! just wanted to say i love the blog... and your family is adorable...
oh, and davy dresses better than me.
tell me where the lycra came from. please tell me. soon.
why is davy so cute?
good luck in surgery. i have been thinking about you so much.
the lycra is ADORABLE!! Just like Davy!! she is so cute. and always so well dressed!
oh love the silver pants! what a cutie patootie!
Found you via cjane and I love your blog. And your Davy.
Where did you get the headband??? LOVE it.
Good luck with the surgery.
She is beautiful!
disco davy!
What a darling outfit! She has the most beautiful face. So much wisdom in that face. Good luck in surgery.
I love Davy's outfit....she is just DARLING!!!!
Love your blog ~ and your children....love seeing what Davey is wearing ~ she's adorable <3
haha...junk in the trunk!!!
My thoughts and prayers are will be with you ~ hugs
I still think that Davy could pull off being Wednesday Addams for Halloween, and this outfit proves it! lol I think the silver pants are adorable, and the chunky legs means she's getting some weight on those thighs. Which in turn means, she's definitely getting enough to eat and grow! Yay! Go Davy!
I have a baby girl (after having four boys) that is the same age as Davy. It is fun dressing boys, but what makes dressing a girl fun is the accessories! I've been reading your blog ever since Cjane recommended it and I seriously copy many of Davy's fashion choices for my little girl. And you wouldn't believe the compliments I get! So...thanks!!
Your little girl has the most spectacular eyes! Thinking about you all--best of luck!
Been thinking of you guys. My sweet girl has a hemangioma in the same spot as Davy's cleft. When we went for her surgery I was feeling the same as you are. I wasn't sure I wanted her to look different. But, we do these things not for ourselves but for our girls. Wishing you guys the best!
She is TOO CUTE!! I love her little outfit. Love you little Davy!
Our first repair surgery was stressful too. One thing that really helped was a pacifier and a rocking chair in a dark room to help pass the time in pre-op. After surgery I seriously didn't even recognize my baby. They told me it was her and I almost didn't believe them. It was so good too, so don't worry. It's in God's hands. He will take care of her, and you.
this is completely unimportant but where do you get her clothes? They are beyond cute.
I hope her surgery goes smoothly
It was soooo great to see you and your kids. I love all of them-they crack me up and have amazing personality. Davy is amazing. You are amazing. Talk about being a quick learner and an in-tune mama.
I'm a silent reader, I absolutely love your blog and your wonderful beautiful family. I am so in love with your little Davy and I wish her and your family all the best of luck. I will keep Davy and you guys in my heart and prayers!
Good luck with the surgery. Back to CHOC? You are in good hands.
Midori, Justin Galovich's wife
I love your photos. All the pictures of Davy turn out so clear and simple. What type of camera do you use? I just have a point and shoot and my baby looks so washed out from the flash.
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