Lucas Camilo

Given Lucas’s rough start in life, we’ve come to recognize that he’s on his own timeline. We likely will never know what caused the hemorrhage in Lucas’s brain around the time of his birth, but since he’s never been diagnosed with any genetic, metabolic or neurological condition, the brain injury and subsequent bleed may be the sole cause of his prolonged hypotonia (low muscle tone). In a sense this is a good thing – as we’ve mentioned on the blog before, the brain injury scenario is a lot better than him having an underlying condition because there’s more chance of full recovery.  And each day of progress and improvement indicates that he’s on such a track.

Of course, whatever caused Lucas to have low muscle tone has slowed down his development significantly.  A lot of preemies tend to have issues that lead to developmental challenges in the first year or so of life, but Lucas especially has a lot of learning to do.  Right now the things we celebrate as achievements are different than most babies, but damn if it isn’t that much more beautiful to see him shine!

Yesterday Burke was in the hospital early and for the first time saw Lucas hold his arm straight up in the air, which he did for about 5 seconds.  When he was born he didn’t move at all, and according to the discharge papers we were reading recently from the Washington Hospital Center, he had hardly any reflexes and didn’t respond to pain.  We celebrated when he first made “anti-gravitational movements”, and have continued to get excited every time he expands his wiggle routine.  But the arm hold was a real acheivement in strength development.

Likewise, it was pretty cool yesterday afternoon when Krista lifted Lucas out of the crib (by herself, without the aid of a nurse), placed him on her knee, and rolled him onto his tummy.  He seemed a little perturbed at first but quickly got in the grove, sucking on his fist with pleasure while maintaining his oxygen saturation level (the big test of any new stunt).

Later on when we put him back in the crib his feeding tube got stuck on something and it really pissed him off.  He cried like we’ve never seen him cry before…. and it was wonderful!  Ok, so it’s never fun to see your baby in pain, but to see him respond with such strong emotions is another real step forward.  And though he can’t actually make a crying sound – because the tracheostomy is placed below his vocal chords – for the first time we heard an audible “honk” come through the tube in the vent that was clearly not in his usual breathing pattern.  As he continued on with his first major fit, he also gave Burke’s hand a helluva squeeze!

Whereas the car seat test was something he had to do to make it out of the NICU, each of these events represent small steps forward on a path to recovery, steps that we recognize as significant because of all that Lucas has been through.  In baby development literature they call them milestones, but the concept is somewhat problematic for us.   For one thing, Lucas is on his own timeline and to try to constantly compare him to “normal babies” isn’t fair given his rough start in life; of course, we suspect it’s going to happen a lot anyway as we continue to see therapists and other specialists in the months to come.  But the idea that child development is perfectly linear and that each child should aim for the same “milestones” within the same time frame is also problematic.  So we’ll keep celebrating Lucas’s achievements, and we know that all of you will continue to give him, and us, moral support as he maneuvers life’s path, whatever windy route he decides to take.