Lucas Camilo

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…

Thanks everyone for your thoughtful responses to our last post.  It’s reassuring to know that we can write about what’s on our minds – even when it’s not rainbows and holidays and Lucas’s awesome progress – and that you’ll stick with us.  Thanks.

But of course there is progress to report, too.  This week we had two visits to specialists who, once again, confirmed that Lucas is doing great. On Wednesday we went in for a follow up visit with our pulmonary doctor who listened to Lucas’s breathing and said he sounded good, even with his small cold.  We spent a while talking with him about questions related to pressure settings for the vent and time off the vent and on the valve.  Dr. Koumbourlis is always warm and helpful and open to talking pulmonology for as long as we want, but ultimately he kept answering our questions by telling us to keep doing what we’re doing: experimenting with time off the vent while avoiding pushing Lucas to exhaustion; and maintaining the settings on the vent which are minimal and not necessary to change if he doesn’t need it.

We also met with our favorite respiratory tech who was full of geeky vent and trach tricks.  He talked to us about the alarm level settings on the vent, the positioning of the trach in Lucas’s neck, and a new technique for giving Lucas extra breaths when his oxygen saturation level dips down into the low 90s.  He has decades of experience working with kids and adults with respiratory issues, so when he got gushy about how well Lucas is doing (and the two of us, too), it felt like a serious compliment.

Two days later we were back at Children’s for a slightly more traumatic visit to the Ear Nose and Throat doctor, who was checking Lucas’s trach and the tubes in his ears.  It turns out Lucas’s ears collect a lot of wax (so embarrassing!), and thus the doctors tried to clean his ears so they could see the tubes.  It also turns out Lucas HATES having his ears cleaned.  The ENT doc and his assistant then wanted to look down the stoma (hole) in his neck with a tiny camera.  They somehow didn’t have the tiny camera which fits down his trach tube available, so they had to pull the trach tube out and stick a larger camera directly into Lucas’s neck, which was pretty traumatic.  Lucas hated that too.

The final report was that things looked good and to keep doing what we’re doing.  We should have called it a day at that, but instead we proceeded up to the lab for a blood draw.  Lucas has notoriously difficult veins to find, which meant lots more poking with even sharper objects than the ENTs used.  Burke snagged a “Mr. Grumpy” sticker for Lucas to try to distract him, but Lucas just threw it on the ground (grumpy indeed!)  By the time we got home Lucas was exhausted.  Even after his long nap he was not the happiest camper in the afternoon.

The other fun news this week is that Lucas’s vocabulary is growing, especially his ability to identify body parts.   He almost always nails the response for “where’s your nose?”, sometimes even preemptively answering it by pointing to his nose.  And for a kid with severe muscle weakness, he has really amazing aim.  He’s also getting pretty good at identifying ears, mouth, belly, and even wiggling his toes on command.  And when he’s not pointing at parts of his body, Lucas is using his hands more actively to make the sign for yes/more, to play his new xylophone, and to feel the textures in his books.  (See the picture of the snowman’s fuzzy mittens above.)

And the final news for today is that although Lucas has had a bit of a cold all week, it hasn’t slowed him down much.  He’s had a small cough and has needed a lot more trach suctioning than usual.  But he’s a trooper and we’re hoping he’s turning the corner on the cold this weekend.

And finally, we never got around to mentioned to the visit of our friends Daniella, Gabe, and Rafi on New Years day.  It was great to see them, and especially great to see Rafi – he’s older, bigger, faster and more determined than when we met him this summer (pics of that visit here).   Rafi brought his helmet with him, which happened to be made of the same jungle-animal green material as Lucas’s trunk brace.  So we tried to get the two of them to pose together, but the closest shot we got was the one below, which represents the meeting well: Rafi on the move, and Lucas shocked at a baby who moves so darn fast!  We’re pretty sure Rafi was too young to take Lucas’s reaction personally and that they’ll be good friends down the road.

Burke’s gone to California for a conference this weekend, so it’s me (Krista, not Lucas) blogging alone today.

The news is that Lucas is a little bit sick.  Which caught us a off guard because he’s been incredibly healthy.  We’ve come so far in trusting Lucas’s immune system that we now grab the oral suction tubing off the floor and stick it right in his mouth.  But earlier this week he started sleeping more and his left eye got a little pink.  In consultation with Burke and Victor, I initially decided everything was fine.  Then Thursday night Lucas slept a record eleven and a half hours straight and woke up with his left eye even redder and swollen.

When I saw his puffy eye it was a good thing I wasn’t attached to any monitors.  For at least 30 seconds I was sure that in my negligence I had caused Lucas to turn permanently blind.  Fortunately I calmed myself slightly before calling the pediatrician’s office.  Actually, that’s a lie.  I dialed in a panic and it rang, but I hung up to pull myself together and then called again.  The receptionist was unmoved and just told me to bring him in.  So when Florence got here Lucas celebrated another big first: his first trip to the pediatrician’s (not the emergency room!) because he’s a little bit sick.

The doctor was pretty unconcerned when she saw Lucas and said it looks like a cold and maybe pink eye.  We came home with some antibacterial ointment and were told he’d be fine.  (Unless he gets a fever, in which case we are to go in to the ER.  Friends have offered to be on call if I need a hand driving Lucas anywhere before Burke gets back — thanks Denise and Heyward!)

And in true Lucas fashion, he’s in as good spirits as ever, despite the nasty runny nose and red eyes.  He slept almost 12 hours straight again last night, so it’s not over yet.  I kept rustling around him this morning, checking his diaper and adjusting his blankets and taking his temperature, but none of it woke him up.  Then, at 9 am I was sitting on the futon reading when Lucas started to wiggle.  He was looking toward me, although I’m not sure he even saw me through his puffy eyes.  But as he opened his eyes and looked out through the goop, he grinned.  Maybe at me, or maybe at the day.  In either case, I wish I could say that I am equally as fun to wake up next to when I’m sick.

Here’s a picture of Lucas a few minutes after waking up – still in a good mood.  He’s wearing his daddy’s old sweat shirt!  Lucas says “We miss you Daddy!  But we’re glad you’re doing the work you’re doing and we’ll be fine here, so don’t come rushing home early!”  Really.  He’s sitting here next to me saying “dadadadadadadaaaaaaaaaaaa.”

So much has happened in the last few weeks that it’s hard to know where to start.  Nonna and Papa went home; Krista got back from the northwest; Lucas has decided that tubes are definitely his favorite toys; we’ve almost completely transitioned from breast milk to a smoothie diet; we’ve seen lots of specialists for routine visits; the three of us went on more outings together; and Lucas has started to grow chest hair.  OK, just kidding about the last one.  But he’s growing so fast that sometimes it seems like one day he’ll go to sleep a baby and wake up a teenager.

The good news on the health front is that Lucas remains super healthy.  He underwent a test last Friday in which a doctor catheterized him, drained his bladder and then filled it up again with some radioactive liquid.  They then took pictures of his bladder and ureters – the tubes that drain down from kidneys to the bladder – to see if the valves are now working and the fluid would stay in his bladder.  Lucas was piping mad as they pumped his bladder full.  (When he heard about it later, Burke was mad too, and thankful to not have to sit through the procedure since he doesn’t handle those kinds of things very well.)  In the end, it was a success – the liquid stayed where it was supposed to, meaning the valves are working and therefore he doesn’t need to take his daily preventative antibiotic anymore!  One more drug we’re done with.  The following Monday morning he was back in the radiology clinic, this time for some routine CT scans of the ventricles in his brain.  The images show that everything is steady, which is good news again: no need for invasive procedures in his brain.

Meanwhile, other signs of health that don’t show up on ultrasounds or CT scans are just as positive.  Lucas has been wiggling around more than ever, cracking up when we tickle him or even threaten a tickle.  His neck seems to be getting stronger, so he looks around the room or studies toys more purposefully.

Maybe it’s the lentils and Swiss chard, or maybe it’s the new vitamins, or maybe it’s the alignment of the stars, but Lucas just looks more vital and happy to be here than ever.  It’s been great.

This past weekend was CISPES’s fifth solidarity cyclers 3-day ride around Maryland, Virginia, and West Virginia.  The two of us, pre-Lucas, helped start the fundraiser ride and we rode it three seasons in a row (check out this video Burke made from 2008).  Every year the cyclists have stopped to camp one night at the Wheatland Vegetable Farm in rural Virginia.  So on Sunday the three of us drove out to the farm to deliver beer and share dinner with the sweaty cyclists.  Every year the ride has taken place during magnificent late-summer-turning-to-fall weather, and this weekend was no exception.  It was a beautiful evening, and despite the prolific population of stink bugs that wouldn’t leave him alone, Lucas seemed to have a good time.  A highlight of the evening was seeing Chip and Susan, the owners of the farm and the visionaries who helped establish farmers markets in the DC area in the late 70s.  Lucas got to hang out in Susan’s arms as she told him about his last trip to the farm, when Krista was 5 months pregnant and growing fast.  Indeed, Wheatland is also the place where friends and family gathered last spring for our commitment ceremony and since Lucas was born in a hurry 2 short months later, we haven’t been back since.

Whether it’s hanging out on the farm, in the backyard, on rolling around on the floor in the living room, chances are these days that when you come across Lucas he’ll be clutching the same thin, translucent object in his hands: the suction tube.  This 5-foot piece of rubber, extending from the growling suction machine to the soft-tipped oral suction catheter, has become Lucas’s very favorite toy and security blanket.  If we hand Lucas the tube when he’s hanging out on his exercise ball it always puts a smile on his face and an extra bounce in his step.  To test out Lucas’s remarkable new reaching skills – he can now bring both arms straight off the ground and hold them vertically extended in front of him – you just need to dangle that suction tube above his head.  We’ve even come to think that sometimes Lucas cringes and pretends that he needs to be suctioned just to trick us into pulling out the tube, at which point he clutches it and holds on for dear life.  He also has an uncanny ability to sense the presence of the tube, whether behind his head or under a pillow, and he almost always figure out how to use his limited movements to grasp it.  And once he’s got a grip, good luck loosening his hands from that tube!

It’s been 9 days since our last update on the blog, the longest we’ve ever gone without posting since Lucas was born. (Needless to say, our moms are always good about alerting us to the fact there’s been such a blog hiatus.)  The last week has been busy with three appointments over five days so indeed it’s time for an update.

But first, speaking of moms we want to give a shout out to Nonna Stansbury (Lucas’s grandma) who turns 64 today.  Happy birthday!  Here’s a song for you :)

[audio:https://lucascamilo.com/wp-content/uploads/2010/09/09-When-Im-Sixty-Four.mp3|titles=09 When I’m Sixty-Four]

Burke was in New York for a board meeting last weekend and he got back just in time for an early Monday morning appointment at the equipment clinic.  The famous wheelchair/stroller hybrid (aka the Kid Cart) that had been ordered for Lucas back in June was finally ready and so went to pick it up and get it fitted especially for Lucas.  It’s quite a high-tech set of wheels for a 13-months old baby – with more possible adjustments than you can ever imagine – and yet Lucas’s low muscle tone and unique body shape proved to be a challenge for the guy from the equipment company.  After sweating through various adjustments it became clear that we weren’t going to find the perfect setup on that day, so we loaded up and headed for home.  It was enough to learn how to detach the various parts so that the beast of a chair would fit in the back of our car… and we figured we’d have more time to experiment with positioning once we were home.

Next up was a visit with the development specialist at Children’s.  We’d seen her once before and got some good suggestions about things we could be working on with Lucas.  This time we ended up spending three hours at the hospital talking about all the things Lucas can and can’t do  (and occasionally even observing the little guy himself) while hearing advice about how to best support his cognitive development.  On one hand we appreciate the development specialist’s mostly positive attitude about Lucas’s progress, while acknowledging the limitations he has.  On the other hand, she has a rather narrow scope in terms of imagining the possibilities (sound familiar?  see our last post about the GI specialist who thinks Lucas should consume commercial formula for the rest of his life).  For example, she questioned our thinking around teaching Lucas sign language – something we’ve heard about from various parents of toddlers with trachs – saying that it would undermine his ability to comprehend spoken language.  In general her theory seems to be that kids with fine and gross motor skills limitations like Lucas should only focus on one thing at a time… which means that he shouldn’t both bounce on the ball and play with a toy in his hands, or both listen to music and stare at the mobile, etc.  And, when it comes to flipping pages in a book (one of Lucas’s current favorite activities) we were scolded for letting him just turn the pages without concentrating on the images on each page.

All of which is to say that though some of the information is helpful and useful, we know it’s just one perspective.  It’s not that we want to be rogue parents that refuse to listen to medical professionals; on the contrary, we’ve learned so much from all the doctors, specialists and therapists following Lucas and appreciate all their expertise and advice.  But they don’t know everything.

Which is a good segue to our next appointment with the cardiologist, one of the few specialists that Lucas had previously never seen.  Lucas visited the cardiologist in order to do some tests on his heart and see if any of his still-unexplained breathing episodes were related to his heart.  Neither the pulmonolgist nor the ear, nose and throat doctor had been able to pinpoint why Lucas’s breathing – on rare occasions and for brief moments – either slows or stops, leading to interventions on our part (that are less and less scary, but still odd enough to warrant talking to the docs).  At any rate, we were happy to hear that Lucas has a very good heart, which wasn’t much of a surprise. :)  It didn’t, however, get us any closer to figuring out the cause of the breathing episodes.

Speaking of good news, in the midst of this busy week we heard from Children’s that Lucas’s hearing test came back perfectly normal!  The tiny tubes that were surgically placed a few months ago seem to have done the job and he’s now hearing everything that comes his way.

And finally, an update from the food front.  In the last week Lucas has incorporated rice cereal, broccoli, and sweet potatoes into his diet… and other than some rather suspicious poop after consecutive sweet potato milk shakes he’s doing great.  More exciting food introductions soon to come!