Mira's home

Who knows what's up with this girl. We don't. The doctors and nurses don't. But what we do know is that she's well enough to be back home again. They kept her until this morning mostly so they could get some maintenance things done - they replaced her g-j tube, which is something that has to be done in the hospital, and they made some adjustments to her chair (including making us two back up pads for her custom shaped back so we have something to use while we're washing the others...which happens plenty because she often ...goes...when she's in her chair. And no amount of chux pads can keep everything perfectly clean.

We also have a new piece of equipment set to show up tomorrow. We've been using a battery operated pulse-oximeter for the last few years to spot-check her heart rate and oxygen levels, but with some of these storms that she's starting to have at night but without making any noise of distress to alert us, so twice over the last few months we've come downstairs in the morning after what seemed to be a peaceful night to find her in a really bad state with her heart rate and the accompanying body temperature. Having a steady monitor that we can leave on all night will give us one more clue to work with.

Maybe not the most flattering photo of Mira, but here's me saying "hi" to my girl. Because she can't hear, I try to talk to her with my vocal cords touching her - on her head, her shoulder, her hand - to give her the best chance she can to "hear" mommy's voice.

It always surprises me how much I miss her when she's gone. It's not like she talks or interacts or anything, but her corner feels awfully empty when she's not here.