Kyrie has endured a long night of fevers and bad breathing to say the least, but still wanted to be with Alex for morning violin practice.
When he is finished, we get out her tiny violin for her to practice… do you see her profile, where she is outgrowing her lower jaw and chin? The more it recedes like that, the more she struggles to breathe.
Even when we have to pretend, because she can’t actually get out in this weather and still breathe.
Red lips are better than blue lips, so we are making progress this morning.
Last night she was vomiting froth, which is always her confirmation of escalating respiratory distress.
For a month now, she has slept like a newborn, almost. She does sleep all night, but too much, from about 530pm to 7am, and then is up for an hour and a half and goes back down to sleep three hours in the morning. Then she’s up for an hour and a half, and goes back down to sleep three hours in the afternoon. Then she’s up for an hour and a half, sometimes two, and then down for the night.
That’s all the energy she has, and she’s trying so hard. We have her on monitors, giving breathing treatments and medicines for breathing and fever, and playing classical music at the tempo we want her heart to beat and lungs to breathe. We are all doing our best.