We are back from our trip to BC. It was intense but worthwhile. I'm glad we got to go on a meet the baby tour. We saw friends and spent time with family. Getting ready to leave and travelling was exhausting. Staying at the MCC Guesthouse was brilliant. Turns out that I have a tribe out west too, people came by for visits, shared toys with M and brought food when they stayed for mealtimes. Abbotsford was GREEN and warm and very springlike which was good for my soul.
Eli seems to be improving when it comes to things like motor skills, or at least is a little more capable than her sister. She can turn her head from side to side when she lays on my chest. She can move her arms and bring her hands to her face. She also cries when she's hungry and when she has a dirty diaper.
It's easy to want to evaluate these things as signs that things are good, that she is doing good. The thing is, this disease is unpredictable and things can shift suddenly. I don't like to evaluate these things, but simply observe them.
Other things are also going on. She had some pretty big apnea episodes at the beginning of our trip. The other day during a belly rub to ease some gas pains, I realized I could feel her liver (this was something that was very enlarged and could be felt in Elianna's belly in the week leading up to her death).
Many times at night I reach over and feel her cold hands and have a moment of panic. I then move my hand to her body to see if I can feel her breathing. Her hands get cold because she can move them out from under her blanket. I wonder if she is uncomfortable? Tonight I will try swaddling her, see if that helps keep her hands warm.
- Posted using BlogPress from my iPhone
