Lucas Camilo

Lucas’s eyes are still pink, but they’re looking better than yesterday.

It’s been cold here, so being bundled up in bed hasn’t been so bad.  Here are a few more shots of Lucas cuteness from the past few days.  Thanks so much to Nan for knitting him the sweater!  And to Florence for the hat.  And to Aunt Penny and Uncle Steve for the pajamas.   And to Aunt Ashley for most of the rest of his clothes!  :)

Burke’s parents spent nearly a week in Washington DC and got in a lot of quality Lucas time while Krista was away.  For his part Lucas had a great time, from singing the Na-Na-Na song, to taking strolls around the neighborhood, to sitting outside as Nonna gardened, to playing with eye glasses, watches, suction tubes … just about anything other than actual toys.

The trip to the farmers market over the weekend was a particular highlight, as was taking naps in both grandparents’ arms.  Burke got to take some time off from work so that the family could hang out together.  Nonna also taught Lucas the wonders of prunes, which can help both big people as well as a little dude who just started taking in all sorts of new foods.

Krista missed Lucas a lot but every time she called Burke assured her that Lucas missed her too but that the proverbial fort was being held down.  We often put on the speaker phone and let Lucas chew on it and smile as his mommy talked away..

September has been the month of many outings for Lucas.  Our Labor Day weekend trip to the woods proved that we could pack well enough to make it through an entire weekend.  The momentum of that successful journey convinced Lucas (and us) to accept his first ever invitation to visit another home.

The invitation came from the Gomes family.  Burke got to know Yves, his aunt Dominica, uncle Henry, and cousin Harold through the immigrant stories project he’s working on, and we wrote about Yves and Harold a while back.  Yves has been the center of much deserved media attention since he won a stay on his deportation a couple months ago, but we were especially excited to get to hang out with Harold.  Harold has muscular dystrophy; a few years ago he got a tracheostomy and he now uses the same vent as Lucas.  But unlike Lucas, Harold is our age.

Although Krista and Lucas were meeting the Gomes for the first time, the dinner felt like a gathering of old friends.  We jumped right into talking about vent settings, suction techniques, and the adventures of home nursing.  We talked with Dominica about the family learning home trach care.  Harold told us the story of getting his trach, we told about everything we’ve learned about Lucas’s disease, needs, and abilities over the past year.  Although this may not sound like the stuff of intimate dinner conversation, it was.  And, among other things, we also got to hear more of the Gomes family’s immigration story as well as talk basketball, Yves and Burke’s shared passion.  Many, many thanks to the Gomes for a wonderful evening!

We talk about getting used to packing up for a Lucas journey, but the reality is that the list of supplies is so incredibly long that there’s often something we forget.  For our trip to the Gomes, we forgot to switch Lucas’s cloth diaper to a disposable one before we left the house, and we forgot the baby wipes, which we ended up desperately needing.. leading to an awkward situation in the middle of dinner :)  Last week we went to the doctor’s office and forgot Lucas’s food, feeding tube and the tray for his new stroller that carries his ventilator and suction machine.  We came up with creative solutions in each case, but there are so many other things that we absolutely can’t forget.  Suction machine and catheters.  Resuscitation bag. Extra trachs. Batteries charged on all the machines and/or back up power sources.  Fortunately, two of the machines we can’t forget – the vent and monitor – are always attached to Lucas, so forgetting them would be like forgetting our heads.  Which on some days seems possible.

Nonetheless, we still made it out to MORE adventures this past weekend.  It was Sha’s birthday this week so Lucas insisted that we roll up the street to his Sunday afternoon party.  Lucas had a good time, and he got to sit at the table and watch a card game, play with a balloon, and then lie back in the yard and watch the afternoon turn to evening.   On Saturday Lucas’s uncle Isham celebrated his birthday at the River House, and Victor agreed to come hang out with Lucas while the two of us went out for the evening.  It was yet another first – the first time both of us left the District of Columbia with Lucas at home.

On Tuesday Lucas’s Nonna and Papa arrived in DC to hang out while Krista goes to Oregon for an extended weekend.   On Wednesday morning all five of us went for a walk with Lucas strapped into his newly re-fitted fancy stroller, and later that day Krista hopped a plane for the west coast.

Though the increasing ease of car and stroller journeys with Lucas is exciting, it’s still hard for us to not be able to take longer trips.  Burke traveled to Seattle in August and now it’s Krista’s turn to go to Portland.  In both cases it’s bittersweet: nice to be able to go back to where we grew up and visit our families (for the first time in over a year); but sad to not be able to take Lucas, and difficult to have to take turns and not be able to all travel together.  For now, Lucas’s condition is still too fragile for air travel but that will change in the future.  And in the meantime we’ll keep rolling to the park and driving to the woods, at least as long as the beautiful fall weather allows us…

Although he missed his daddy, Lucas had a great extended weekend with his Gramma Susan.  Lucas seemed excited to have a new audience (of one) who appreciated all his developments: his singing, his increasing precision of head and arm movements, and his late-night goofiness.  In fact, we had thought that he was starting to develop a slightly earlier-to-bed routine, but while his Gramma was here he pulled out all the stops to stay up late playing and giggling.  Lucas still doesn’t make any sound when he laughs, but that somehow makes his super-wide-mouth full body laugh all the more irresistible.

Lucas’s great passion these days is reading.  Or more specifically, page turning.  While most toys seem to bore him after a short while, he lights up every time he sees a book coming his way.  It doesn’t seem to matter to him whether it’s a book he’s read a thousand times or for the first time, whether it’s a cardboard page book, a cloth book, or a paper book.  His Gramma obliged him over and over and over again, holding books at just the right angle so he could grab and turn the pages.  In the video below he’s so happy turning pages that his feet are wiggling in delight.

Burke is in Seattle and on Whidbey Island for the weekend, both for meetings and to get some time with his family.  The first day Burke was gone Lucas acted like it was no big deal, but soon after he started missing his daddy, which he told him on the the phone last night (see video below).

His Gramma Susan flew in yesterday, and Lucas has been having fun showing off all he’s learned to do since he saw her last.  Susan brought more birthday presents, including tie-died socks to match his tie-died shirt.  The whole outfit, together with the gut he’s developing, makes him look like an aging hippie.

Friday and Saturday nights Lucas doesn’t have a nurse overnight with him.  Susan is staying across the street with our neighbor, Mary, so last night was the first night Lucas and I (Krista) had ever spent alone together.  I was definitely a little bit nervous, hoping Lucas wasn’t falling asleep thinking about how his daddy is always faster out of bed and more alert when alarms go off in the middle of the night.  Fortunately the only alarms that went off over night were benign — I hadn’t plugged the monitor in all the way so the low battery alarm sounded; then I didn’t reset the food pump correctly when I fed him at 3:30 so another alarm went off 20 minutes later.  Lucas slept through it all though and breathed steadily all night long.  He was in a really good mood when he got up this morning, which I took as affirmation that he trusts me to do this more often.  I told him it’s a deal, as long as he doesn’t tell his daddy I can actually respond coherently to alarms that go off after midnight.

Here’s a snippet from Lucas’s long tirade last night.  Burke had Lucas on speaker phone so his cousins could talk to him, too.

Translation: “I love you and miss you, Madden and Daddy.  And come back soon.  And Mommy says Washington is nice but Oregon is nicer.  Na-na-na-na-na-na-na.”