I closed yesterday’s entry by insinuating that I would be taking care of the 2:00 a.m. diaper change.  Jodi wants me to set the record straight publicly – she was the one to apply the late-night butt cream.  However, that also meant that she slept in while I took care of the morning medical routine, and this led to some adventure here at 3429 Cornell Place.

To be honest, I was running a little behind on the 8:00 a.m. IV meds.  And after these come the rest.  I was working feverishly to get all ten oral meds drawn up into syringes, unhook the feeding pump, get the drugs into the feeding tube, and adequately flush them in without clogging the line.  And there was JT in the middle of it all, patiently watching a video and cheerfully sitting still to make it easier for me.  But he had one small request – could I please blow up his Santa and snowman friend?  Of course.  So I jumped up and opened the door to the little porch, let it swing shut behind me since he’s not allowed to breathe any unfiltered outside air, and plugged in the blow-up Christmas decoration.  Then I turned to go back in, grabbed the door handle… and the door was locked. 

JT thought this was hilarious.  I knew Jodi was sleeping upstairs, so in my pajamas and socks, with my son watching and laughing, I had to climb over the railing, work my way down to the decking level, and do the ‘ol hang-and-drop maneuver to land in the driveway.  From there I could punch in the garage door code and get back inside through the basement entrance.  When I came up the steps he was in high spirts -it was great to watch him laugh at my expense.

Otherwise, it’s been a fairly quiet day.  His face is definitely swelling up more due to the steroids.  We took a drive or two to look around a bit, and he took another five-minute stroll.  Even that is taxing and he gets tired and asks to be carried before he can make it back to the apartment.  Still, he’s up and around and we see moments every day when he perks up and seems to feel pretty good.

He asks for all of his old favorite foods, but once we put them in front of him he’ll take a bite and then spit it out.  They told us not to worry, that he’s still early to be eating.  Tonight he ate a couple of pasta noodles and we celebrated the small victory.

One more day with Jodi here and then she’ll head north to join Justice.  We’re both feeling the impending weight of separation and this makes us more anxious than ever for the day when we can all be together again.  Simply being together is such a blessing and I think we’ll always remember that because of these days we’ve had to be apart.

Please pray for continued protection from any illness, continued evidence of a strong and enduring engraftment, and for complete freedom from any GVHD.  Thank you.