Get it? Ha! I crack my stir crazy self up!
Actually I'm not too bad currently. I took a break and went and got a brief massage of my neck and shoulders. Then I went to the Carters store to get a couple of new things for Keira. I hope buying shirts and skirts 2 sizes too big is enough to fit over her cast. Otherwise, she's going to go through the next 6 weeks wearing only a hot pink bodysuit. Fashion for the likes of Lady Gaga.
When I got back from my little outing, Keira was asleep listening to Bruce Springsteen on Grandpa's phone. Nice. She knows what's good.
Let me backup. We got here at 5:30 on Monday morning. The surgery went well. They only had to do 2 of the 4 possible procedures: the bilateral hip osteotomy and the hip adductor lengthening. They did not need to do the hamstring lengthening or the hip socket reconstruction (I forget the fancy name for that one). They essentially cut off the top of her femurs and fastened them into the hip sockets at a 45-ish degree angle. This will hopefully prevent future pain and allow her to bear weight on her feet, even if she never walks.
Due in large part to our concerns, the anesthesiologist used an epidural block for pain and left it in until this morning, hoping this would decrease the need for narcotic drugs. They also put her on the PICU, largely because we requested it, and that has helped put us at ease. We feel like we know many of the staff here and many of them remember K.
It's really nerve-racking to be the sole advocate for a person for whom you can't be certain exactly what they need or how they're feeling. Furthermore I am no medical professional, so my understanding of the options are limited.The staff has relied heavily on my intuition. On the upside, this could result in better patient care assuming that I am very into an accurate about what my daughter is feeling. On the other hand, I could be quite wrong, requesting interventions that are unnecessary.
It's been rocky. It's been very hard to control Keira's pain and she slept very very little until last night, when they "bumped up the Valium," which seemed to help.
She doesn't seem any worse without the epidural. And she's less fragile because we aren't worried about messing with her epidural line that is so small it's like a hair.
I love the doctor on the unit here. He's very compassionate and candid. Today he visited and basically admitted that they had screwed up because they had been trying too hard. They were being so careful, kid-gloving everything based on her history, that they'd missed the mark. He said the answer is likely as straightforward as treating her like s typical kid and increasing her med dosages. He said it's like they were all working off of old wives tales.
Once again, we're so thankful for Keira's fan club. Everyone's kind words and gestures are so helpful. K's therapists have all checked on her, too. Yesterday, her feeding therapist came and brought her a Kermit doll. Keira clearly recognized the therapist but gave her a crystal clear "no" face. Like, "you've gotta be nuts if you think I'm doing any work right now!"
The boys are staying with Jeff's folks and are having a good week. Ronin told his grandma, "I want Keira to get better, but not for 11 days." He loves being at their house!
I anticipate that we'll be here a few more days. We have to be confident that we can manage K's pain at home. 
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