UPDATE: She's out, she's well, everything went precisely as planned. Thanks for all the love, people.
Remember Isabel? Many of you have kindly written and asked after her, wondering how she's been doing since her big surgery, so here is the latest:
The latest is awfully cute. She is a four months old now, smiling and sometimes giggling an almost imperceptibly quiet little giggle. She's slowly gaining weight with the help of both G-tube feeds and bottles and, despite continued problems with keeping her milk down, she is (finally!) approaching ten pounds. She likes to lay on the floor, clutching rattles and inching around the blanket, and is even trying to flip herself over.
She wears her helmet most of the time, which is a little uncomfortable as the hot Idaho summer unfolds. Here you can see her wee, pink seashell ear and damp tufts of fuzz.
And as wonderful as these things are, there is a but. Her parents learned a month ago that the coronal sutures in her skull have once again fused. (This is, apparently, not an uncommon occurrence for children with Crouzon Syndrome.) And, once again, her growing brain has nowhere to go but up, and up is being compressed by a pink and purple butterfly helmet.
So, first thing tomorrow morning, Isabel is once again having surgery. She has an excellent team of surgeons and they believe this surgery will be brief and simple when compared to the first. We all certainly hope so.
And, once again, I'm asking for your best hopes for a little girl you don't know, a little girl who has been through far more in her first four months of life than most of us can imagine. She'd really like to just be better already, we can tell.
Thank you, in advance, for your prayers, well wishes, hopes, finger crossings, and breath holding. You're a good egg.