Lucas Camilo

Burke managed not to burn the house down while Krista was gone, in part because family and friends were checking in on him and Lucas throughout the week.   Plus, uncle Isham came by on Friday night with a pizza and some other reinforcements just as the last of the food was running out.

All in all Lucas had a good week and Burke enjoyed getting to spend more time than usual with him.  With the thermometer in DC consistently hitting the upper 90s (over 100 degrees with humidity!) it was nice to hang out inside our air conditioned basement and play with Lucas, while getting some work done during his naps.  On Thursday and Friday nurse Florence stayed with Lucas as Burke went off to the office, and on Saturday our friend Amy from the Washington Hospital Center (who was working in the NICU when Lucas was born) came by for a few hours to visit.  Meanwhile, Burke’s walkie-talkie-baby-monitor system allowed him to get outside occasionally to water the plans and turn the compost.  Since these days Lucas loves watching hands, faces, and (especially) stuffed animals from a distance, Burke also rigged up a flying elephant in the middle of the room that provided endless fun and distraction.

Krista returned triumphantly from Detroit on Sunday and Lucas was very happy to see her, smiling away throughout the afternoon as they snuggled and played together.  He also got in a much needed scrub and you can see from the picture that Lucas has pretty much outgrown his favorite whale bath.

Krista has a lot of reflections coming back from the US Social Forum and will share some of them over the blog in the coming days.  In the meantime, we appreciate the comments around the MTM articles that we posted last week.  We’re still researching and thinking through the complexities of the world of muscle disease and disability but we do plan to grapple with many of the questions that people put forward.