new equilibrium

Good news to report. Things are, for the moment, stable. I went back to work yesterday, wading through 200+ emails, picking up where I left off two weeks ago. Sophie is at Nana Nancy's, acting for the most part like a normal toddler.

She slept in her Cinderella toddler bed through the night twice, an amazing leap forward for the girl who didn't sleep more than 2 hours in a row for 14 months. Props to Nancy for taking this step I haven't been ready to take.

Sophie is currently obsessed with the Cinderella movie, much to the dismay of the rest of the family.' If I hear , Sing sweet mocking bird' one more time!', is a refrain repeated by  the women in the family. A funny note about this obsession, is that last night she woke up in the middle of the night saying, 'Cinder gaga, cinder gaga'. Silly baby.

We go this Friday for the first clinical appointment, where we will see how they inflate the expanders. Papa Nick is willing to learn so we an save the drive to Cleveland, maybe.

Thanks for all of your good wishes and prayers! 

Montessori gone awry

Dance party

Sophie loved Iggy Pop. She is punk rock all the way.

Sent from my iPhone

The answer

I have decided what to tell people when they ask what happened to
Sophie. ' Baby fight club'.

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Home again

We just got home after a long day. Thankfully the necrotic tissue was
not infected and the eye is just swelling.

The team at rainbow babies is just great. Dr. Gosain said this process
is fraught with complications, but what we encountered should not
cause any setbacks. He moved the port and found a spot it can stay
under the skin, which is way better than an external port that she
could yank out. We are on for starting expansion on 10/2.

For now we will rest, heal and make pasta necklaces.

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Heading back home

Sophie is out of recover, drank some juice and ate some fruit. The port was moved to her temple, so luckily it is still under the skin. The Doctor added 5 CC of saline to each expander while she was there, and she is recovering nicely. Now the long drive back home.