Lucas Camilo

This past weekend we made our second trek to Gramma’s house, just outside Portland.  It was a bit of a harrowing journey — three and a half hours down I-5 on a dark, stormy night.  We hadn’t really counted on how different it would be to drive with Lucas in the dark.  It’s pretty critical to be able to see him, since he loses his ability to vocalize when he’s having trouble breathing.  We actually considered pulling over in Olympia and sleeping in a motel at the side of the highway, but we powered through (in part because Lucas fell asleep, and he usually needs less suctioning then) and made it to Gramma’s around 10 pm — very late night for us.

Lucas was really happy to be at Gramma’s house.  She has his favorite version of the book “There Was an Old Lady Who Swallowed a Fly,” and he demanded that she read it probably 50 times over the three days we were there.  In fact, he was loved it so much he protested our trip to the zoo.  He was happy about seeing the penguins for about 60 seconds, and then promptly demanded we go home to read the book.  All weekend long Gramma was amazingly patient, reading it over and over, and even managing to get a few other books read in between.

Besides wanting to visit Gramma, we went to Portland to catch up with family and friends and new babies.  We got to see Krista’s old friend Jennie and her baby (now toddler) Oscar, then Krista’s cousin Erica and her little baby, Berlin.  Lucas used to be skeptical of babies, but he seemed fairly interested in meeting the little ones.  He was especially impressed with Oscar, since Oscar immediately took to Caspar Babypants (Lucas’s favorite band).  Lucas also got some time with Krista’s Aunt Penny and Uncle Steve.  Steve is a salmon fisherman, so he and Lucas had a lot to talk about: fry, smolt, and favorite salmon species, and then the question of whether or not steelhead are salmon or trout…  And then on Saturday morning we took Lucas to the farmer’s market, and he was excited about picking out some pumpkins for a little while.  But then, shortly after taking the cute pictures, he had another meltdown and demanded we get back to Gramma’s house immediately.

On Saturday night there was a CISPES event, with a report back from a women who went on the medical brigade to El Salvador this summer.  We were excited to go to hear the report and connect with a lot of friends, but nervous because we have never taken Lucas out to something that started at 8 pm (ie bed time).  Fortunately the event started with two Salvadoran musicians playing revolutionary folk music, and Lucas LOVED it.  He even got into shouting and pumping his fist for the “Dale!” part of “Sombrero Azul,” which is the unofficial anthem of the Salvadoran left.  Needless to say, we were beaming with pride.

He also held out (thanks to the iPad) through almost the whole presentation.  It turns out that in the right position, with the right acoustics, Lucas can actually get loud enough to be a bit disruptive during an otherwise quiet presentation, so for the first time ever we found ourselves asking Lucas to be quiet.  At one point Lucas passed gas, and, thanks to our family game of naming all bodily functions, Lucas shouted out “you tooted!” (He still refers to himself as “you.”)  Of course Lucas is hard to understand, so no one else caught the joke, but we loved it.  And more importantly, it was fantastic to be able to take Lucas out to an event and feel inspired by something that is so close to our hearts.

On our way out of Portland on Sunday morning we stopped to meet the Machinchi family, including Javad.  Krista had met them at the MTM family conference last summer, but it was the first time for Burke and Lucas.  Lucas immediately loved Shannon, mimicking all her great hand gestures. (Ask Lucas about Shannon and he’ll show you the sign he made up for her.)  And although Lucas and Javad are far apart in age, they share share a passion for i-pads.  We pointed out to Lucas other things they have in common (Javad definitely studied our suction technique when Lucas’s machine came on), but Lucas was most excited by Javad’s science apps.  When we got home and showed Lucas this picture of him and Javad, he exclaimed “you met Javad!”  And then, “you saw Javad’s i-pad!”  Next summer there will be another MTM family conference, so we’re excited about the opportunity not just to hang out with Javad more, but lots more MTM kids and families.

On Saturday “Reptile Man” came to our neighborhood community center and showed off his animals to nearly 100 awe-struck little kids (plus their parents).  We ran into neighbors who have a 2 1/2 year old, Mari, who also uses a wheelchair, so she and Lucas sat in the front row.  The whole production was right up Lucas’s alley — Reptile Man gave all sorts of fun facts about animals (ie: boa constrictors can’t actually swallow humans) and shared the kids general awe of snakes and lizards.  Each time he brought out a new animal to show the audience, Reptile Man made sure to hold them extra close up for Lucas and Mari.  It was very exciting, and Lucas today is still beaming when he says “you touched the snake!” (“you” meaning himself.)

A few months ago we tried to get Lucas interested in a large lizard that was on display at an outdoor festival, and Lucas absolutely freaked out at the suggestion that he touch it.  So it was nice to see him being so adventurous with Reptile Man.  He gave the tortoise lots of pats, touched an alligator and a small snake.  The only one he wouldn’t touch was the extra large viper snake, which wouldn’t stop flicking its tongue at him.

At school this past week Lucas started practicing driving on a new loaner power chair, and that seems to be going OK.  But it’s still physically hard for him to steer, and he gets frustrated when he wants to go forward but can’t.  We can’t help but wish for even better technology so this would be easier for him – a lighter chair, a more sensitive steering devise, the perfect head rest.  But it seems like maybe he’s got close to the best possible chair setup that exists now, so we’re hoping we can find the right hand position to make it work.  And ultimately learning to drive a power chair might just end up being more difficult for Lucas than we thought it would be.

The other big adventure last week was the addition of even more experts to Team Lucas, which meant a long, long morning at Children’s Hospital.  We started our day meeting a nurse practitioner in the neurosurgery department.  Neurosurgeons follow Lucas because of his hydrocephalus (extra fluid in his ventricles) which has been steady since his first days of life, but the fact that he has such large ventricles tends to worry doctors — especially doctors who have only gotten to know Lucas via his CT and MRI images.  The nurse came into the room ready to run through a battery of tests, but thankfully she spent some time getting to know Lucas (who was mostly chanting “more books!”), and determined that he was not showing clinical signs of excess pressure on his brain.  So for now we’re off the hook – she, like our docs in DC, was convinced he is doing well without brain surgery.  And of course we like doctors who subscribe to the “don’t fix it if it ain’t broken” philosophy, so we were happy about that new team member.

Next up was the new Physical Medicine doctor who we’d heard good things about, but Dr. Apkon proved to be even better than expected.  In medical hierarchy, physical medicine doctors oversee therapists — physical, occupational, speech, etc.  In DC the one we saw most of the time seemed to interpret her role as rubber stamping whatever our therapists were already doing.  Our visits often felt like a wasted trip because the most she interacted with Lucas was checking his ankle flexion.  (Which, needless to say, has not been our topmost priority.)

But our new doctor was really helpful in thinking through everything that helps Lucas be independent/interactive in the world: power chairs, wheelchairs, standers, bath chairs, etc.  She showed us pictures of presentations she’s give to SMA families (a muscle disease that has some similarities to MTM), describing new contraptions that might enable Lucas to move his arms more.   She also talked us through the physiology of a growing kid’s body that does not bear weight, about things we can do now to help Lucas in the long run (turns out ankle flexion will be important…)  The development of our bodies is built on the assumption that we are upright and our bones are weight-bearing, so we talked about the fact that Lucas’s bones will likely never calcify like other kids, making him prone to fractures.  She also described the anatomy of a developing hip socket, and told us about better positioning to help Lucas’s hip socket develop, minimizing the risk of the bone popping out of the joint.  And of course, like all our favorite doctors, she actually spent time talking to Lucas — about books, stickers and all the other important things doctors should talk to their toddler patients about.

Our last MD visit of the day was with our neurologist.  Lucas was exhausted and ready, as he said over and over, to GET IN THE VAN AND GO HOME.  Lucas can be quite clear about being done, so he turned that final appointment into a quick affair.  In a few minutes we decided to go up to a full dose of the medicine Lucas is taking experimentally for muscle tone to see if it helps.

On our way out our very favorite nurse at Children’s stopped by to say hi.  She coaches the US Paralympic swim team, so gave us a brief report while checking in with Lucas about penguins.  And then in the hall on the way to get our flu shots we ran into both of Lucas’s respiratory therapists, and they were both excited to see Lucas so we couldn’t just rush off.  (These are the times I’m sure Lucas wishes he had a power chair — so he could just keep rolling towards the door.)

And then we were in the van, and Lucas was asleep before we were even half way through Mister Rabbit.  And grateful for the great team of docs we’re getting to know here.

Krista is in Washington DC this weekend and so it’s just me and Lucas.  We’re missing her but also enjoying ourselves in the good weather.  My dad (aka Papa) is coming over today and we’re going to have some quality boys time.  Lucas doesn’t like college football so I guess we’ll have to crack a couple cold ginger beers and watch “Polar Bear Polar Bear” on youtube repeat…

Yesterday Lucas and I spent the whole day alone together without interruption (except for a 45 minute occupational therapy visit in the morning).  It was both glorious and challenging.  By the end of the day the house was a minefield of crayons, markers, books, banana-stained rags, medical supplies, toddler clothes, dirty dishes, and more… I was so tired that I didn’t bother to clean up, just collapsed into bed to watch a movie once Lucas fell asleep*.

Though I was tired, I also felt really good.  Lucas was in a great mood, one of those days when the longer we spend together the better it gets.  In the afternoon Lucas was being especially hilarious, pleasing himself with simple things like removing and replacing the cap on the little insect-catcher.  After I had released the honeybee, spider, and lavender leaves, he would  look into the empty plastic container and say “No one’s in there!”  By the time I got the camera out he had settled down, and sometimes video just doesn’t do justice to Lucas’s ridiculous sense of humor.  But here you go anyway:

A day alone with Lucas also brings home the tough reality of caring for a child with acute special needs: your options are limited.  Krista has more experience with this since she spends more time with Lucas, and has been home alone various times over the last year especially (because of my work travel schedule).  She tends to be more adventurous, pushing Lucas to take excursions even when it’s just the two of them, fearlessly loading him and all his gear into the van for a trip downtown to the aquarium, or making plans to meet up with friends.  When she’s gone I’m inclined to hunker down at home with Lucas, since getting out and being social AND taking care of Lucas alone is complicated, to say the least.  We’re both fortunate to have a lot of support from family but nevertheless it’s tough.

Yesterday was so beautiful that Lucas and I couldn’t resist taking a walk in Seward Park, and then spending a few hours playing on the grass in the back yard.  The best part of the day, though, was lying down in bed together to watch the first half hour of “Finding Nemo.”  It’s really the only movie that Lucas will watch more than 5 minutes of, and last night he was enamored with the fact that it was Nemo and his dad swimming around together.  Each time there was a scene involving Nemo and Marlin Lucas would exclaim “Nemo and his daddy!” and then point right at my chest, with a huge smile on his face, and say “I’m a daddy too!” (he’s still got a little pronoun confusion).  By the time he fell asleep – and I took one look at the bombshell that was our house and decided to jump in bed rather than clean up – all I could think about was how damn happy it makes me to be Lucas’s dad.

(* Note: the movie that I ended up watching was Restrepo, an Afghanistan war documentary which I highly recommend, yet may seem like a strange choice given the feel-good, sentimental-parent mood I was in at the time.  Alas, it’s on my short list of “violent movies that Krista probably won’t watch with me”, and as we near the 11th anniversary of that war’s beginning it seems important to remind myself, in a visceral way,  how brutal and misguided war really is.  Perhaps it goes along with the sentimental parent thing after all, in so far as I long for Lucas to be able to live in a country that doesn’t dedicate a huge chunk of it’s shrinking budget to funding death and destruction… But I guess that’s another blog post.)