As I type this, Morgan is with 2 friends....playing Parcheesi, finishing dinner and trying to figure out how to get the Light Bright to work. Even Ryan joined in the fun!
Things here are puttering along. We are getting into a routine with meds, naps, visits etc while Ryan is busy with old friends. Even Karl went back to work on Wednesday. Back to Morgan...we did have to increase her pain meds Tuesday evening (by 33%), and she has been pretty good ever since. I think Morgan is pulling her typical "Morgan moves" that if it doesn't hurt too much, "I don't need the extra Fentanyl". This is getting her into a bit of trouble by not keeping on top of the pain, but I am learning too. I've become more persistent in having Morgan take her Fentanyl lollipop whenever she looks like she MIGHT be in any pain. We'll see what tonight brings. We may need to up her dose again tonight or tomorrow.
The social visits have been wonderful when she is feeling up to it. Tuesday was tough...Wednesday and today have been pretty good. She soooo enjoys playing with friends (even though she doesn't get up off the couch)! It is like she masks over anything negative that she feels in order to be 100% there as far as play and talking. I'm getting better at reading her in this regard also. The other day, we laid low. It is such a fine line....rest...indulging the spirit...nap...play. As I say to folks now, we are totally winging it and go in whatever direction the spirit moves us in! While this may seem like a cop out, it is amazing how everything has been falling into place. There has got to be some higher, cosmic orchestration of events for it feels like whatever transpires is the way it should be. This flow is keeping me relatively sane.
The medical world is still very involved in monitoring what is going on. Her Dr. up at DH is involved as well as her pediatrician here. The visiting nurse has been coming, but as we need it. Definitely 2x/week...but more if we need it....any day, any time. This set up is very nice!
That is the scoop for now. She finally got through all her presents this afternoon. Thank you all! Many, many of the presents, cards and visits have brought about a huge smile. I cannot even express how this warms my heart!
I'll update in another couple of days, barring any significant changes. Happy New Year everyone!