Lucas Camilo

It’s been over a week since we posted last, but not for lack of material. Lucas is perfecting his rapid-fire pucker kisses.  Burke has shifted into a new position at work.  Krista is taking another writing class. And all three of us are excitedly anticipating our first batch sauerkraut, which is now 2 1/2 weeks into fermentation and making the whole house smell like a juicy compost pile in August. The smell has been so pungent at times that we’re thinking we might spare Lucas on this first experimental batch. But assuming the two of us come through the first kraut unscathed, Lucas will definitely be getting sauerkraut in his smoothies very soon. (If you haven’t caught wind of the amazing health benefits of natural fermentation, check out Sandor Katz, www.wildfermentation.com.)

Speaking of Lucas’s amazing foods — he’s still eating well and growing (length-wise more than girth). We saw a new G.I. doctor last week, and she was great. Not only was she was very supportive of Lucas’s homemade smoothie diet, but she made it a point to ask us a few times if we were getting everything out of the appointment we needed. Such a relief, and such a contrast to past experiences!  Since Lucas hasn’t gained much weight in a couple months we’re adding a little bit more avocado and some coconut oil to his food. The other day we had fresh pineapple, so Lucas got his first ever pina colada (plus beans and broccoli and carrots).

Burke’s in New York City this weekend for a Resource Generation meeting, so it’s just Lucas and Krista at home for the weekend. This morning we had friends over for brunch and a raucous game of Speed Scabble/Bananagrams. Lucas was quiet at first (maybe suspicious of people who could have so much fun with a stack of tiles of small letters) but he warmed up to having all the company.  He happily showed off his xylophone and kissing skills, and was thrilled to have more people read him books. He even twisted Janelle’s arm until she agreed to do a dramatic reading of Make Way for Ducklings. It was a great day, but we’re looking forward to having Burke home tomorrow night.

Yesterday Lucas turned 18 months, which would be hard to believe if he weren’t acting so mature lately (check out this post from his first 1/2 birthday to see how much he’s grown in a year).  He’s continuing to develop more preferences and an ability to communicate them: sometimes he wants to cuddle, sometimes he doesn’t; sometimes the only toy he wants is his suction tube; almost any time he’s on his daddy’s lap he wants to be flipped upside down; and usually when the camera comes out, he wants so badly to hold it himself that he stops whatever cuteness is going on to demand we show him the pictures. But we’ve managed to get a few cute shots of Lucas recently, especially with friends visiting, so here they are. Happy half birthday to Lucas!

Playing with the suction tube

Hanging with Laura during her visit from El Salvador

Happy baby pose (while admiring myself in the mirror)

Nap time

Hello neighbor!

Lucas fits into the big-kid FMLN shirt. Hooray!

Over the past few weeks we’ve read about some positive developments related to new research on Myotubular Myopathy (MTM), the disease that Lucas was diagnosed with just over a year ago.  A professor at the University of Michigan named James Dowling received a $350,000 grant to study a potential treatment for people with MTM.  Dowling is studying the “neuromuscular junction” – the meeting point of nerve cells and muscle fibers – in mice models of MTM, and says in an article, “We believe the results of this study, funded by the [Muscular Dystrophy Association], will lead to the first therapy for MTM.”

Meanwhile, a French doctor name Jocelyn Laporte has been researching MTM with a similar grant.  The UK-based “Information Point” website has good information about Laporte’s research, which has the goal of identifying the genetic basis of MTM, understanding the disease mechanisms; and studying the pathology and test therapeutic approaches in model systems.

Closer to home is the Begg’s lab in Boston, probably the leader in MTM research.  We talked last year about making a trip north at some point so that Lucas can participate in the research there, and it certainly would be a good learning experience for us as well.  Reading the latest news as well as the comment from Professor Dowling has us thinking again about a trip to the Beggs lab, and makes us cautiously optimistic that a treatment to help mitigate the effects of MTM could be developed during Lucas’s lifetime.

In general, we’re interested in learning about and potentially participating in studies, but at this point we remain more focused on doing all we can to make life good for Lucas within the limitations of his disability.  Which is why we’ve gotten even more excited about connecting with people around issues of disability rights.

Yesterday we had a great brunch with a group of folks who are passionate about disability justice, people who have disabilities themselves and/or family members with disabilities.  It was really nice to reflect on some of the issues we face and learn from others who have more experience than us. And, it was just fun to hang out and eat good food.  You can see the extensive list of disability themed books that folks at the brunch contributed to and sent to the local progressive bookstore Busboys and Poets.

Finally, while we’re on the subject we wanted to pass on an action to take in support of people with disabilities.  Some friends we met through the internet – who have an amazing child with similar challenges to Lucas – posted this to their site.   Lucas uses  complex rehab technology (his manual wheelchair/adaptive seating system) and will continue to need it for many years to come.  We hope others can participate in this action on Wednesday!

February 16 – National Call-in Day for Complex Rehab Technology

Help assure access for individuals with disabilities to the Complex Rehabilitation Technology they require!
• Mark the date to call your Members of Congress on February 16th.
• Tell Congress you support a Separate Benefit Category for Complex Rehab Technology (CRT) under Medicare.
• Tell Congress to eliminate Medicare’s “In the Home” restriction for CRT products.
• Encourage your friends and family to call too.
Join with thousands and register for the effort at www.CELAadvocacy.org to receive an information packet. Learn more at the ITEM coalition.

Complex Rehab Technology (CRT) products are defined as medically necessary, individually configured devices that require evaluation, configuration, fitting, adjustment or programming. Examples of CRT include individually configured manual wheelchair systems, power wheelchair systems, adaptive seating systems, alternative positioning systems and other mobility devices. These products and services are designed to meet the specific and unique medical, physical, and functional needs of an individual with a primary diagnosis resulting from a congenital disorder, progressive or degenerative neuromuscular disease, or from certain types of injury or trauma.

In case you missed it… Lucas got pretty excited watching Mubarak finally get booted from Egpyt on Friday!

It’s been a good week for Lucas – he’s been rocking the xylophone (a Xmas present from grandma Susan), sitting up more in his chair, bouncing on the giant yellow peanut-ball, and smiling as he shows off his obsession with pointing his index figure repeatedly at his nose.  Here’s a video of the xylophone playing – notice the hum of the vent is absent as Lucas is wearing his Passy-Muir valve:

He also started his new nebulizetreatment for psuedomonas, which has to happen twice a day but doesn’t end up being too much of a problem.  Lucas was much more upset about his latest shot of Synagis, a drug that helps prevent high-risk babies like Lucas from getting the nasty RSV respiratory infection.   Burke and Florence took Lucas into the pediatrician today for his monthly dose, and as soon as the (very sweet) nurse who administers the shot walked in the room Lucas started freaking out – he turned beet red, opened his mouth wide open in “cry-face”, and even shed a few tears.  The nurse hadn’t even pulled out the shot yet!  Presumably Lucas recognized her and figured out at that the moment what was coming… when she came back in a few minutes later with the shot Lucas went crazy again, this time even making whimpering sounds as she quickly administered the shot, half a dose in each thigh.  Burke held his hand and we all had to chuckle a little – it’s never fun seeing a baby cry, but in a way it was kinda cute, and also nice to see Lucas demonstrate both powers of recognition and a strong emotion reaction.

Lucas has made a few more excursions outside lately and seems to be enjoying it.  We watched the Super Bowl with friends Yari, Michael, Isham and Olivia in a house on the Maryland border, and Lucas seemed to enjoy the experience.  He also had fun during the multiple block walk through downtown DC this morning on the way to the pediatrician.  Then Krista brought him outside this afternoon to sit in the front yard and watch the people and cars go by.  It was 50 degrees, the warmest day in a while, which has us all looking forward to spring.

Speaking of outings, a couple people have inquired about our last blog post and the “challenges” that led us to say that “there won’t be any more winter road trips this year.”  The reality is that we probably didn’t describe well enough just how difficult it is to pack up Lucas for an overnight trip.  It takes hours and involves a lot of worrying about which of the many spare parts/power-cords/medications we might forget.  Last week we didn’t forget anything significant, but the fact that we spent 99% of the cold weekend inside watching movies had us thinking that we could just as well have stayed home and done the same thing.  That being said, the view of the trees and the snow-covered hills was pretty nice…

Despite the threat of yet another storm on Friday, we went ahead and took Lucas out to Berkeley Springs, West Virginia for the weekend.  The small cabin we rented outside of town met all our needs — we could drive right up, it was surrounded by trees, and it had lots of electricity.   It also had a flat screen TV and DVD player – not exactly roughing it in the woods, but we figure the challenge of packing for Lucas-travel automatically qualifies us for roughing it.  We managed to watch a few of movies, read some books, play around the house, and even try “sledding” with Lucas.

The weekend was not without its challenges (let’s just say there won’t be any more winter road trips this year), but it was ultimately good to have a change of pace.  Here are a few photo highlights, starting with Lucas’s introduction to the snowball.