Lucas Camilo

Lucas woke up feeling better today, and he was pretty energetic when we arrived at the NICU this morning.  His arms and legs were moving a lot more than we’ve seen before, he had his eyes open for a long stretch, and he even made some squinching facial expressions to show that he wasn’t happy with adjustments to his ventilator tube.  He got to hang out on both Burke and Krista’s chest for an hour each, and all the while he continues to do well processing the small quantities of breast milk going down his nose tube.  It’s nice to see progress, if only just a little.  Day by day, poco a poco, baby steps… that’s what we keep telling him.

He had more visitors over the last couple days: Max and Jess (who brought exciting finger puppets), Sha (with some new reading material), Ilana and Buddy (with a CISPES paycheck for Burke!), Becca and Becca (with more finger puppets), and Simon (who took us to see a movie after the visit, a nice break from reality.)  Meanwhile, Lucas got to check out all the wonderful, creative cards that his 4-year old cousin Madden has been sending him.  He was a little surprised to see the one that said “Lucas loves Madden” given that they’ve yet to actually meet, but he took her word for it.

Early next week we’ll sit down with all the doctors and specialists looking after Lucas and try to get a big picture of what’s going on and what lies ahead, knowing that they probably still won’t have a diagnosis.  The latest genetic tests for Prader-Willi syndrome came up negative, so they’ve pretty much exhausted the possibility of chromosomal disorders.

Tonight we’re back at the hospital after watching the movie “Taking Woodstock”, and it’s nice to spend Saturday night with Lucas, play him some Sweet Honey and the Rock on the stereo, and tell him stories of hippies sliding in the mud.

Lucas takes down 3 milliliters of milk for lunch