Lucas Camilo

The big event yesterday was our first real “stroll” with Lucas. We’d taken him outside a number of times – for the pediatrician’s appointment and the concert on the front lawn – but never actually loaded up the stroller and taken a walk just for the sake of it.  That’s in part because “loading up the stroller” is a bit of an ordeal in Lucas’s case. It involves a large, heavy battery, the home vent, a portable suction device, the pulse/oxygenation monitor, and various other small props. But yesterday afternoon it was sunny and beautiful outside so we decided to go for it.

The stroll was a success but also somewhat of a comedy.  Halfway up the ally alarms started blaring and it was unclear whether the signal had gone bad or whether we were going to have to perform an emergency operation just 25 steps from our back gate.  But things stabilized and we proceeded on, only to have the vent fall out of the stroller halfway down the next block, causing more alarms as tubes in the circuit came disconnected.  We got him rolling again, and eventually achieved a full loop around what amounts to a long city block and then back around and down the ally from where we came.  At the end Lucas looked a little pale – he’s not used to temps in the low 50s – but was no worse for the wear.  And we hung out a while longer in the back yard enjoying the crisp fall air before bringing him inside.

Among other recent achievements were some big steps with the physical therapist who comes by our apartment once a week.  He’s a wonderful guy and has already developed a great understanding of Lucas’s challenges over the course of his first couple visits.  He has simple yet thoughtful recommendations for us each time: Lucas should spend more time on his sides so that gravity isn’t working against him as much when he moves his hands and seeks to touch his face; when he is on his back we should prop his arms up so that he can move them around in front of his face and see his own hands as much as possible; and, we should get him a new trach that will allow him to move and rotate his head more, something that is currently a major struggle.   The best part about the session yesterday with Dan was getting Lucas to grasp a couple of objects and move them around and up to his mouth.  His favorite was the Native American rattle that aunt Megan brought him, which he managed to get both hands around and move up to the point where he could gnaw on the tough, rawhide top.  Whatever floats your boat, little man!

Look at me, I can touch my hands together over my head! (with a little help from mom :)