Lucas Camilo

We’re writing with a major sense of accomplishment today having just returned from our first big family road trip — to Brooklyn, then Boston, then back to Washington DC.  We had a great time, and Lucas was especially a champ.   Most of the trip went better than we could have hoped for, though it was not without its rough spots.  For example, Krista has sworn off EVER driving into New York City again.  Ever.

much needed rest near our rented hybrid SUV

There were so many remarkable things about the trip.  First of all, Lucas has never sat up for more than a couple hours at a time before… and our drive from DC to Brooklyn took more than seven!  Though we took a couple short breaks along the way, this was still asking a lot of Lucas’s body.  He was exhausted by the time we arrived, and we were worried that he might be pooped for the next few days.  But as soon as we got him out of the car and into a bed, he perked up and was in good spirits.   And the same thing happened with our drive from NYC to Boston (which took five hours) and the return trip to DC (which we split up into two parts).  He read books, played with his singing turtle, read more books and requested that we sing songs.  As the trips wore on he got impatient and then physically drained, but that’s to be expected of anyone who spends so much time in a car.  So though it was tiring, it was exciting to discover that Lucas can travel far from home.

A major highlight of the Brooklyn trip was reconnecting with so many friends, some who had never met Lucas or hadn’t seen him in a long time.  Saturday was a beautiful summer day, and we spent 10 hours sitting out on Kevin and Liz’s porch as friends stopped through to hang out.  A special moment was Lucas’s meeting with our friends Manuel and Lisa and their two kids, Emelie and Antonio.  They brought Lucas a few of their favorite books and the two of them were patient and gentle as they read through the books with him.  It was incredibly sweet to see Lucas hanging out with kids we love so much, especially since he’s been nervous in the past.  We saw so many other friends throughout the day – Jacoby and Lezlie, Marsha and Ruby, Jesse and Alessandra (who were 9 months + 2 days pregnant!), Elspeth and Katrina, Phil, Tom and Chris – and we want to say thanks to all of you for making your way out to visit us!

(Lucas wouldn’t let us write about Brooklyn without mentioning the fact that we stayed at the “cat house.”  Kevin and Liz have four cats, and the minute we got into the house, Lucas spotted a cat and started frantically making the sign for “cat”.  He was very proud of himself, pointing and making the sign every time he saw one.  He also loved their ceiling fan, pointing it out and signing “fan” almost as much as “cat.”)

In Boston we spent more time connecting with new/old friends, and Lucas continued to do well.  We stayed with Jocelyn and Jason and their two kids, Arabella (2) and Jackson (4), who had been getting ready for Lucas’s arrival by practicing calm voices and gathering up duck books.  Their strategy worked – Lucas seemed very happy hanging out with them, and again it was great for us to seem him interacting with kids.  They even took us to a playground near their house where Lucas got to swing (with some help) on a playground swing.  He was tired from all the travel that morning but also totally fascinated watching Arabella swing right next to him.

Jason, Jocelyn, Jackson and Arabella were amazing hosts and we really appreciated having the kids spend time together and being able to have other friends drop by their house (like Christy and Oz, who stuck around for some quality book time with Lucas). It was also great to talk parenting and politics with Jocelyn and Jason after the kids went to bed.  Burke and Jocelyn met while living in El Salvador back in 2002 (though they haven’t seen each other since), and because Krista also lived their for more than a year we had many mutual friends to catch up on, stories to tell, and Salvadoran politics to dissect late into the night.

Our trek to Boston was partly vacation, but we also chose to go there in particular because we wanted to meet the researches who are studying myotubular myopathy.  So on Monday afternoon we went to the lab at Boston Children’s Hospital and met with its director, Dr. Alan Beggs.   Dr. Beggs and Elizabeth, a genetic counselor who works with him, made us feel very welcome, and they were clearly happy to meet Lucas.  We’ll write later about what we learned there – nothing astounding, but more details than we had known before.

Before heading back to DC we got to meet two families of kids with disabilities.   On Tuesday morning we met Will, a 10 year old with MTM, his mom Erin and their nurse Sue at the Boston Science Museum.  Will knew Lucas likes duck books so he brought Lucas “Make Way for Ducklings” (a Boston classic).  Will’s a huge Red Sox fan, and he used his computer to tell us about his recent adventures meeting some of the Sox’s players.  It was great to meet Will and Erin and begin to learn from their many more years of experience.  The night before we got to meet Jim and Cora, parents to a 3½ year old named Leo (who we didn’t get to meet this time around).  Leo has some similar and some different special needs as Lucas, and it feels like we have a lot in common with his parents just by nature of being young families navigating disability.  Dinner with Jim and Cora felt like meeting old friends – relieving to meet other people who know what we’re going through even before we start telling them about it.

Thanks to everyone who helped make the trip possible!  Here are a few more pictures:

Kevin reads a book while hangin’ in the cat house

Lezlie, Jacoby and Lucas get crazy with finger pupets

Lucas had a good weekend, highlighted by his first trip to the Unitarian church up the street.  Krista has been going to All Souls for years but officially became a member today.  We’ve gotten to know a bunch of people the social justice-oriented congregation, especially through a class she took there called “the Soulful Path,” so it was fun to introduce them to Lucas.  A number of them  brought us food and helped out around the time of Lucas’s birth, something we’ll always remember and appreciate.

In another cool connection, the pastor Rob Hardies lived in the same town in Guatemala — a post-war repatriation that was still experiencing trauma — as Krista back in the 1990s.  He’s a great guy, and was prepared for our vacuum-cleaner sounding suction machine to kick on in the middle of the sermon should Lucas need it.  As it happened, Lucas was kinda freaked out by the huge crowd, or the clapping, or the loud organ (or all of the above) and so we had to take him out into the hall early on, do laps and sing songs.  It turns out he’s a lot more into “Old McDonald” than the holy spirit (for what it’s worth, there’s not much mention of the latter at All Souls anyway, as people “walk diverse spiritual paths”).

Lucas calmed down later and we were able to hang out for coffee and donuts after the service.  A couple who was visiting from California came up to us and introduced themselves as parents of a young woman with disabilities, and they talked about how supportive their Unitarian congregation had been to them and their daughter.  We talked to them for a while and it was a really nice connection to make.

Back at home, we caught Lucas perusing one of his favorite anti-imperialist magazines – WIN, the quarterly publication of the War Resisters League – and he proceeded to engage in a game of “where’s Lucas”.  Halfway through we switched to video mode and recorded a pretty funny clip of Lucas.  Enjoy!

Have we mentioned that Lucas LOVES DUCKS? He says (signs) duck when he first wakes up in the morning, when he’s happiest throughout the day, and then later when he’s grumpy, and then again as he’s falling asleep at night. It’s tough to say what he loves more right now – ducks or books – since he usually signs the two together. Meaning, “get me a duck book.” He’ll even throw in a “please” and a “thank you” if he doesn’t see you moving quickly enough to get him a duck book.

Lucas’s fascination with ducks has been growing over the past few months. First he learned the sign and loved quacking his fingers together. Then he learned to identify ducks in his books, and pretty soon he was rapidly flipping past all the other animals until he got to the duck page of any animal book. When he lands on the page with downy, yellow ducks, he points, smiles, and quacks his hands proudly. He’s now able to “read” himself more pages in the animal books (signing cow, butterfly, sheep, cat, and mouse too), but he still pauses longest on the duck page.

So it occurred to us recently that he might like real ducks. Over Memorial Day weekend we went with our friend Alexis out to the Kenilworth Aquatic Gardens – a preserved wetland area with old lily and lotus gardens along the Anacostia River. It was great for Lucas because there was over a mile of accessible boardwalk that wound through the wetlands, but the closest we found to ducks were a family of geese. The growing goslings looked a lot like ducks to us, but either the sun was in Lucas’s eyes or he just wasn’t buying it.

So this weekend, with Nonna and Papa in town visiting, we decided it was time to see some real live ducks. On Saturday morning we packed Lucas up early  — it’s been humid and in the 90s for the last week — and beat the crowds to the bird exhibit at the zoo.  (For some strange reason the ducks are not a featured animal at the National Zoo and thus we had missed them the couple other times we’ve wandered around.)

This would be a great story if Lucas had gone crazy when we finally saw ducks. But in fact, his reaction to the ducks pretty much matched their reaction to us. About a dozen ducks floated peacefully around three small ponds in the shade. A couple stood on rocks on cleaned their feathers. A mommy duck led a pack of tiny babies through the pond. Lucas looked intently, and with our encouragement of ducks! ducks! ducks! and quack! quack! quack!, he eventually said “duck.” Unclear if it was because he was happy about the ducks in front of him — maybe totally awe struck — or just to get us to stop quacking at him.

We later found ducks hanging out with the flamingos, and they were fun to watch. But soon Lucas gave us the “go” sign, and he actually looked happiest when we were cruising around, stopping and going every 10 steps on his command. So the jury’s out on real ducks. But, of course, as soon as we got home he was ready for a duck book.

And Nonna and Papa have come up big for Lucas in the books category, too.  Since they arrived on Thursday he’s had them reading him books for hours on end. And he’s also gotten some good  sessions in the swing as well as endless singing of “Old MacDonald,” with Lucas requesting “duck” for every verse. (Thanks Nonna and Papa!)

Lucas is not actually that into drawing but he sure does love eating the markers!

Lucas has been doing really well lately, making lots of progress in therapy and continuing to expand his sign-language repertoire. He’s been loving taking trips in the car – last week we drove out to the Aquatic Gardens in Southeast DC, today we went to Takoma Park Jazz festival – and is much more engaged and aware as he cruises around in his kid kart. It seems like everyday Lucas does something new and cool.

We’ve had some sometimes revealing, sometimes challenging visits with doctors and healthcare professionals recently.  A few weeks back we finally went to Children’s to see the neurosurgeon regarding Lucas’s MRI in April (a rather harrowing adventure if you recall).  He assured us once again that Lucas should not get a VP shunt (which would help drain fluid from his brain) despite the fact that his ventricles remain large from hydrocephalus.  Since the ventricles do not appear to be growing at a rapid rate or exuding pressure on the rest of his brain, a shunt is simply not worth the risk associated with surgery, infection, etc.  We expected this answer and were satisfied with it.

But his answer to our question about other possible effects of the intraventricular hemorrhaging Lucas had at birth was surprising.  In his opinion, the MRI shows a reduced amount of white matter in Lucas’s brain which could ultimately impact his development.  We had allowed for the possibility that the bleeding in Lucas’s brain when he was born could have led to other minor adaptations in his brain, but we hadn’t heard anyone talk about reduced white matter (perhaps there was a mention early on but it didn’t seem important next to everything else).  As it turns out, the role of white matter in the brain is somewhat nebulous, and the neurosurgeon didn’t seem all that concerned about Lucas’s lack of it.

According to this Wikipedia article “White matter is the tissue through which messages pass between different areas of gray matter within the nervous system. Using a computer network as an analogy, the gray matter can be thought of as the actual computers themselves, whereas the white matter represents the network cables connecting the computers together.”  It goes on: “The brain in general (and especially a child’s brain) can adapt to white-matter damage by finding alternative routes that bypass the damaged white-matter areas, and can therefore maintain good connections between the various areas of gray matter.”

So what to make of this?  First, everyone agrees that Lucas is intelligent and does not appear to have cognitive delays, and thus our initial reaction was to not be worried.  We did inquire within some of the Myotubular Myopathy support groups and found that other boys with MTM have also had issues with white matter.  We want to talk to other doctors and specialists to learn more, and in fact our next opportunity will be when we visit the MDA clinic at Children’s on Thursday.  And we’ll continue to do more asking around and research on our own as well.

Next up was a visit by two therapists as part of an Individualized Family Service Plan (IFSP) assessment to re-certify Lucas for early intervention services.  It’s been nearly a year since his first such assessment and Lucas has come a long way since then.  Still, since we’ve contracted the physical, occupational, and speech/language therapist ourselves, it’s never been totally clear how early intervention helps us.   Mostly, it ensures that Lucas can get coverage for therapy through Health Services for Children with Special Needs, our secondary insurance.

Lots of special needs parents tell horror stories about the IFSP process and there’s no doubt it’s a strange ordeal – to have people come into your home and “rate” your child and your family as part of an institutional decision-making process which may or may not allow you to have coverage for important services.  So we were pleasantly surprised about how easy the whole interaction seemed.  It helped that Lucas was in a good mood and that the therapists were nice people; ultimately they recognized two things that we already knew: 1) Lucas is a smart kid, and 2) he needs lots of therapy.  They recommended that he continue to get physical, occupational and speech/language therapy, and the process also helped us articulate some of our hopes/goals for Lucas in the short and medium term.

Finally, last week we made out first ever trip to the urologist (adding another specialist to Lucas’s already long list of docs).  Lucas, like many kids with MTM, was born with undescended testicles, which can lead to health concerns but was nevertheless low on the list of things to deal with back when he was born (as his pediatrician once remarked, “no big deal, he shouldn’t be needing those anytime soon!”)  We won’t go into details on this point since Lucas would probably veto this as an in-depth blog topic if he had the choice, but the final word is that we may at some point choose to do a minor surgery that would mostly resolve the issue.

Despite the uncertainty of the white matter issue and the possibility of having to subject Lucas to another surgery, we can’t help but feel pretty good about where he’s at right now in terms of his health and development.  And so we’re planning a big road trip to New York and Boston at the end of June… but more about that in the next post.

Chillin' on the grass at the Takoma Park Jazz Festival (thanks Isham)