Abigail (our daughter) was away for about 2 weeks and it was pretty interesting to talk with her last night about what differences she’s seen with Rebecca. I know she’s changed in the last couple weeks, but being too close to it day after day you don’t see it as well.

Rebecca has undergone a lot of changes lately. Her speech is having some issues and she sometimes is not totally making sense in what she says as her words get a little confused. She is sleeping a lot more and it’s difficult to hold a conversation with her sometimes because she just can’t keep her eyes open. She’s also seeing and hearing things occasionally, and mostly not in a scary way, but more in a funny way (the other day there was (apprantly) a “hariy man in a flower dress” standing next to me, and hello kitty was sitting on a chair in the living room the other day.) Also she has developed some involuntary muscle spasms on top of all of this. I think most of this is from the pain medicine, but we had been at a level that she was still in pain, so we went up to the next higher level and now this. It’s possible that the disease is causing some of these things too, but it’s hard to know what is doing what.

Texting has been a problem for her as she is having issues writing things out, and also keeps falling asleep while trying to respond, so I’ve started reading her text messages and then writing what she says back (so don’t say anything bad about me, I’ll see it)

We are also having blood pressure issues and her blood pressure continues to be low (systolic in the 70s-90 range). We are now taking midodrine to try to get it up, but it seems to have zero affect. It’s not helping that she’s not drinking a lot either.

I’m sharing this to just manage expectations for you all…
– be aware if you text her, she may text gobledy-gook, or it may take a long time to get a response
– if you call her she may fall asleep while on the phone, coming in and out of consciousness
– if you visit she’s getting to the point where she can’t really hold much of a conversation and will nod off several times, although there are occasional moments of clarity and good conversation.

We are now at the point that she will probably never leave the house again, walking to the bathroom is more than she can handle right now, and having her legs not elevated is just not working anymore, it’s just too painful.

That’s a lot of negatives. The positives are that she’s fairly comfortable, and she really enjoys being in the living room right in the middle of me and our daughters watching tv and laughing and joking about things and watching outside our front window. We continue to get good time together and she is able to crack jokes and smile and give me smooches. Over the years we never really prayed together, but lately we’ve been praying together every night and it’s special. I’m a big “it is what it is” guy, and so I don’t really dwell too much on the negatives that I have no control over, so in light of the positives I’m enjoying where we are right now, and I’m thankful for it over where we could be.

Have a good weekend!