Me and my girl were out the other day, just having fun.
She is such a funny little peanut.
She’s fascinated by everything around her.
She has a tendency toward hysterical mispronunciations.
And she laughs constantly.
She’s also one tough cookie. Right now she’s finishing up her fourth week of serial casting. And not one complaint other than asking for a band-aid on her pinky toe.
The serial casting is to increase her dorsiflexion before going into a new pair of AFOs. She’s missing some essential muscles on the top of her teeny tiny feet.
And so, as much as I hate trying to find shoes to fit them, AFOs are the ticket.
Still not sure exactly what the future holds for our Vivienne, due to her extremely rare form of skeletal dysplaysia. We know she’ll be short, because skeletal dysplaysia = dwarfism. We know she’ll eventually need arm lengthening surgery, because of her bilateral arm deformity.
But, from a medical standpoint, that’s all we know.
Because no specialist, doctor, or therapist so far has been able to find anyone else in the whole world like our Vivi Cakes.
Which is actually pretty darn cool.
Ridiculously grateful that I get to be the one to laugh with her.
Vivi’s adorable hair bow is made by my friend Tiffany at Mei Mei and Co. Tiffany is fundraising to bring her little one home from China. Check out her hair bows – crazy adorable – and shop with a beautiful purpose.
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Happy (almost) Sunday, y’all.
I'm Stefanie. Wife to one and mom to 12. Occasional blogger. Wannabe photographer. Constant grace-needer.
That is one amazingly special girl that’s perfectly made.
(not to mention that she’s a cute as a BUG!)
~nancy
She is just perfect! Her smile always lights up your page. Praying for her courageous little heart.
I love that smile and her headband!
So glad she is able to find joy throughout it all. What a blessed little girl to have YOU by her side!
Enjoying your blog very much! (We are working on our Dossier) Thank you for sharing your heart in your last post. We had two of our birth children who wore AFO’s – one of them for almost three years total! After she was done, we had a sock party for her, and her Grandmas and Aunts all sent her fun socks in the mail. It was a perfect celebration of being able to wear normal socks and shoes again!!
Blessing to you, Stefanie. Your children are beautiful.
She’s precious! An idea for shoes with AFO’s…we found Hatchbacks brand shoes to be perfect with them. The backs open downward, making them easier to get on with the unflexible bottoms of the AFO’s. Plus, they are much wider with plenty of room already built in for the braces. Granted, they aren’t the most beautiful shoes, but they aren’t too bad…especially the black patent Mary Janes.
I am so thankful that God gave her to you. He knew just who she needed. (And just who you needed also!)
She is as beautiful as she is special! That smile!
Gin =)
She is incredibly beautiful.
She is also absolutely adorable
Mollyxxx
We always had luck with wide or extra wide shoes from stride right. Take out the insert. It was still a challenge to get the DAFOS in, but it was the best we found.
Beautiful pictures and post as always! Continues prayers for all procedures and adventures!
May she never loose that sense of wonder. She has the brightest smile – it’s contagious
She is simply adorable
– Ally
Oh she’s just perfect.
She is just precious! If you find any great shoes for AFOs please pass the info along. I really don’t like character shoes but those generally seem to fit John’s AFO the best.