Lucas Camilo

It’s hard to believe that it’s already August, meaning that it was exactly a year ago that we were hanging out at Swedish hospital in Seattle, trying to figure out why Krista had gone into early labor (more on that later).

It’s equally hard to believe that Lucas is becoming a little person of sorts, all 21 pounds of him.  As wispy blond hair fills his head – albeit somewhat unevenly – and more sounds continue to emerge from his mouth, a real character is taking shape.  Perhaps most spectacular is to see Lucas’s beaming smile, which is happening more and more often these days.  There are things that make Lucas happy and things that make him mad, and as his condition slowly improves he is better able express his emotions.

Lucas had surgery on his ears a month ago and it’s becoming apparent that it was successful, in so far as Lucas is hearing more and responding to the sounds around him.  Among his new favorite things is the sound of whistling (both Burke and nurse Victor are skilled whistlers, while Krista is practicing and getting better every day).  He likes to hear Pete Seeger and Bob Marley songs whistled, and perked up when our friend Max whistled a little John Philip Sousa last week.  He also likes the squeaky giraffe and other high pitched sounds.

The experiments Lucas is doing with his voice also make it clear that he’s hearing more.   In addition to the whale sounds we featured on the blog, he can now say “naa-naa-naa-naa-naa” on and off for about an hour.  It’s hard to pinpoint why he decides to speak incessantly at certain times while going silent at others, but given the challenges of vocalizing with a tracheostomy and ventilator, it’s always exciting when he does speak.  Meanwhile, he’s been playing enthusiastically with the new mobile cousin Madden helped make for him, and getting more into staring at himself in the mirror as well as spinning the little ball at the base of the mirror.

Finally, we decided to pull out the hammock last weekend and hang it in our living room for Lucas.  He was already a big fan of rolling and bouncing, so it wasn’t a big surprise when he lit up in the swinging hammock.  It’s now become a part of his daily routine.  So while the heat wave has prevented us from going outside much with Lucas lately, all these exciting new things have kept him busy and prevented him from getting too restless.

As we mentioned before, the conclusion of July brings back memories of the ordeal we found ourselves in exactly a year ago.  Some of you may have received a series of emails – later reprinted on this blog – that we wrote after Krista went into early labor on the airplane (!!) to Seattle in late July of last year.  We’ll never forget that day and how Lucas was nearly born at 28 weeks.  Luckily, labor was stopped and Lucas held off for another three weeks, waiting until the day after we flew back to DC to be born.

Reading over our uncertain reflections from a year ago is strange.  We were heartened by a negative chromosome test that we assumed had ruled out the possibility that Lucas had a genetic disorder.  Of course, the test only screened for common conditions like Downs and not ones like MTM that effect 1 in every 100,000 babies.  Muscle disease actually was brought up as a possibility for why Krista had excess amniotic fluid back then, but since she was feeling kicks in her belly we ruled it out.  In retrospect this makes sense: though Lucas still doesn’t move his legs much when lying in bed, if you put his lower body in a tub of water he’ll start kicking all around.

We’re thankful for the support that we received when things first got scary with Krista’s pregnancy, just as we continue to be grateful for all the love and encouragement over the last year.  Lucas has come a long way and when we remember back to those scary days in the hospital a year ago we mostly just feel lucky to have him in our life.

Here’s the latest Lucas photo album, highlighting some special moments from the last 2 months: