It’s been a roller-coaster week this week. On Sunday we took her to church and I shocked a couple of people by allowing them to take and hold her for a moment. 🙂 It only took 5 weeks, but I’m becoming comfortable with allowing others to hold her a little more then I was. She cried at church for the first time and there were a few people that said, “Wow she does make noise!” She became calm enough later though that someone else who hadn’t been there for the screaming asked if she ever fussed. I told them yes, but usually around 1 to 3 in the morning. Sunday night during bible study I handed her around, much to the shock of some people there as well (where all the pictures from this post come from).
We’re still holding her all the time. A few people find it difficult to understand, even a good friend of mine. He has told me he wouldn’t do that, but I bet if he was in my situation that may not entirely be the case. If her whole life is one of being held, warm, and comfortable in our arms then that’s a pretty good run… Yeah, we don’t sleep well and it can be very tiring, but it’s worth it. Kim and I trade off nights and have attempted to put together a schedule that we can sustain long term, we’ll see how that goes.
Monday was a “fair” day, she was a little weaker, and slightly pale, but not like the start of last week. Dawn and Jessica came from Hospice, and Cheryl (a clergywoman) from hospice also dropped by. Jessica can hear a heart murmur now, and we continue to see an abnormal heart rhythm. We talked with her about how we’ve seen her progress and wondered if “having some bad days, then plateau for a while, then have some bad days, then plateau for a while” was normal, and they have seen this before.
She had a racing heart last night, and this afternoon she’s quite pale, her hands and arms especially.
More pictures of Alexandria at Bible Study:
