Lucas Camilo

The other day Krista saw a little boy running around the coffee shop and it occurred to her that he was about the same height as Lucas.  She asked his mom how old he was and the answer was 2.

There are two things that were immediately striking about this: first, that a kid Lucas’s size is running around (quite a contrast to Lucas who has never stood, or even sat up on his own for that matter); and second, that Lucas is a tall dude for his age!  Lucas now weighs over 25 pounds and is 33 1/2 inches tall.  That’s almost 3 feet tall, and he’s only 16 months old!

The question “what’s Lucas up to these days?” is always a tough one to respond to in a brief sentence, but these days we’ve got a pretty good stock answer: “he’s, uh, growing.”  Sometimes we wake up on the morning and go to give Lucas a morning kiss in his crib and it seems as if he’s added another half inch during the night.  In fact, he’s nearly grown out of his second crib in the back room – there are only a few inches of space left before both his feet and the top of his head will be touching the respective ends.

All of this seems well and good – every parent loves to see their child grow, right? – except that as we previously mentioned, Lucas can’t sit up or move his body much as all.  While his fine moter skills are developing remarkably, his ability to twist his torso, to shift body positions or roll over, is pretty much non-existent.  His muscle tone is so low that he needs braces and props to hold him in any position other than lying flat on his back or tummy.

Under these circumstances, Lucas’s rate of growth isn’t all that exciting; rather, it’s downright scary, at least when we imagine ourselves years down the line.  The taller Lucas gets the more chance he’ll have of developing scoliosis later in life; the longer his torso gets, the quicker he grows out of his special braces and chair, meaning that he needs new ones.  Mostly though, it’s his weight gain that gets us thinking about the challenges of the future.

Already, picking Lucas up is a complicated ordeal, and at this point Victor and Florence (Lucas’s nurses) are the only people other than us who really feel confident doing it.  For example, when you put a single hand under his waist and lift, his butt goes up but the rest of his body stays on the ground.  His arms fall back behind him, his legs droop, and if you don’t have the other hand firmly behind his neck then you’re in big trouble.  All of this is compounded by the vent tubing connected to his trach and the pulse-ox monitor probe running from his toe, which add an extra layer to an already challenging maneuver.

And yet, lifting Lucas is not only necessary but often a total joy: when Lucas is in a good mood there’s nothing he enjoys more than  getting swung around the room,  or having his head flipped head back into “upsidedown Lucas” position, or laying on someone’s chest for a good snuggle session.  It wasn’t long ago that we could easily pick Lucas up and do all this stuff, and we can still pull it off, but 25 pounds of a very floppy body is different than 15 pounds.  And it’s hard to imagine 35 pounds.  Or 50.

The reality is that Lucas will may ever be able to walk, and he probably won’t be able to sit up straight on his own anytime in the near future.  Playing with him in the ways we now do will get more challenging as he grows.  Moving him from place to place is also going to get a lot harder.  Burke has recently committed to stretching his back more and starting to strengthen his abdominal muscles in order to better carry Lucas.  He jokes that he’s going to have to get a personal trainer soon in order to get all of his Lucas-lifting muscles in better shape.  And the thing is, it’s not really a joke.

There’s not much we can do about Lucas growing.  He’s not at all chubby right now and we’re certainly not going to starve him.  In general, being tall is a characteristic of people with Myotubular Myopathy, one of those freaky things about this disease that seems to doubly punish kids like Lucas: not only is this genetic mutation going to dramatically inhibit the development of your muscles, but it’s going to make your body really long as well so that moving around is that much more difficult.

We don’t mean to complain about this, nor to we want anyone to feel sorry for Lucas.  This is just a reality that we’re coming to terms with and which is important to share as we enter into subsequent stages of Lucas’s development.  There are so many amazing things that he’s doing these days that we (usually) can’t help but focus on the positive.  But every pound he gains and every ½ inch he adds to his height gets us a little close to that day when it won’t be so easy to pick Lucas up and dance around the room… and that’s scary.  Because dancing around makes Lucas happy.  And so does bouncing on daddy’s knee as he cruises in the make-believe choo-choo train.  We love Lucas so much that seeing him happy at these moments is the greatest thing in the world.  So we’ll cherish each minute, and look forward, sometimes anxiously, to new adventures that he can take part in even as he grows bigger…

It is hard to believe, but today is the one year anniversary of the day we brought Lucas home from the hospital.  There’s so much to say about everything that’s happened in a year, that, well, it’s a good thing we keep a blog because we couldn’t begin to sum it all up in one post.  Most importantly, for a whole year we’ve felt happy multiple times a day to have such a beautiful kid in our lives… and especially happy to have him at home with us!

All three of us have come so far in a year, but Lucas most of all – he’s about three times bigger today than a year ago. Here’s Nov. 18, 2009…

And a year later…

Despite some residual effects of his cold/eye infection, Lucas has been doing well this past week.  He’s been sitting up more in his chair – sometimes using his brace which keeps him very upright – and spending a little more time off the ventilator, including a span of nearly 5 hours on the Passy-Muir valve – a new record!

Unfortunately, the nursing company that oversees Lucas’s home care has not been doing so well lately, and they’ve decided to take it out on their clients (or so it seems).  This last week we were the victim of their latest ridiculous tirade and the story is worth relating, if only to help illustrate the challenges many parents of special needs face.

On Friday the nursing supervisors showed up at our home for her monthly “re-certification.”  From the beginning she had a chip on her shoulder and seemed determined to find something that would allow her to criticize us and assert her own power.  She found it quickly in the new ventilator that appeared by Lucas’s bedside.  You see, about three weeks ago the respiratory therapist from the medical supply company called us up and said that Lucas’s vent needed to be serviced, and that he’d come by with a replacement vent.  The LTV 1150 looks and works nearly the same as the LTV 950, and so it only took about 30 seconds for him to show us the one slight variation.  All the settings and displays were the same, and he hung out for an hour in our home to make sure it was working for Lucas before moving on.  We subsequently showed Victor and Florence, our home nurses, the one slight variation and everything went back to normal.  Until Friday.

The nursing supervisor was outraged that we hadn’t reported the vent change or gotten orders from the pulmonologist.  We explained that it was basically the same vent but she was determined to make everyone involved feel horrible.  And she wasn’t finished.  She observed Florence feeding Lucas one of our homemade blended formulas and really flipped her lid.  She demanded orders for the food, to which we responded that we hadn’t received them from the GI doctor, though we had agreed on a feeding plan weeks before after much haggling.  She called the GI specialist and exclaimed “they’re giving him some green concoction!”  Krista’s mom was on hand for the festivities and later observed, “she’s not very nice, is she?”  Krista, meanwhile, remained admirably calm throughout, and ultimately agreed to get the orders.  Ultimately, the supervisor effectively sent Florence home in the middle of her shift.  (Also, since it was Friday afternoon, we weren’t able to get the orders until Monday and therefore had to cancel Florence’s Sunday evening shift as well.)

The story continues with a series of phone calls on Monday and Tuesday, getting proper orders submitted and re-submitted, talking to different doctors, the respiratory therapist, Lucas’s case manager at Health Services for Children with Special Needs, etc.  Around midday Tuesday the nursing supervisor demanded that Victor, who had the next shift on Tuesday night, come into to the office immediately to get “trained” on the new vent (that’s the exact same as the old vent and which he’s been using for the last 2 weeks) as well as for “education” – ie disciplining – from the company.  This was the last straw.  Victor does a 12-hour overnight shift so being forced to drive an hour each way into the office in the middle of the day would mean that he’d show up to our home exhausted, without heaving slept.  Plus, even worse than the way we’ve been treated in all this is the treatment of the nurses.  So Krista called back ready to threaten us leaving the company (a somewhat complicated proposition or else we would have done it long ago).  Despite a lot of bluster, the supervisor ultimately conceded and said that Victor could come last night.  A small victory in a long, ongoing battle.

There are reasons that these companies have such strict practices, but everyone we’ve talked to agrees that our home nursing company crosses the line repeatedly.  But we’ve also heard that others out there aren’t much better.  And we like Victor and Florence a lot and don’t want to lose them.  There is a way they could switch to another company with us, and we’ll continue to pursue that possibility.    For now we just need to take a deep breath.

Each time something like this happens we’re struck by how poorly this system is set up to serve the needs of people with disabilities.  We’re also reminded how lucky we are to have each other, to have a supportive network of family and friends, and to have a level of financial stability that leaves us with options even if we’re cut off by the nursing company, or nearly lose our secondary health insurance (which happened a month ago).  This episode has been a pain and headache, but ultimately we’re relishing our small victory, having gotten what we want within just a few days.  We’re also aware that – as we wrote last year during our initial battle with the medical industrial complex around Lucas’s discharge – we are exercising privileges (of race and class, having the time, the know-how, the stamina, and the relationships with doctors) that not everyone brings to these fights.   And even still, Lucas gets screwed sometimes by this messed up health care system!  But we’re trying to figure out ways to make sure our battles are not just for Lucas’s sake but ultimately benefit as many kids and people with disabilities as possible.

Speaking of which… we’re excited about the momentum building toward the “My Baby Rides the Short Bus” event on December 4.

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!

For a while now we’ve been talking about diversifying Lucas’s feeding routine, and the recent purchase of a high-powered Vita-mix blender has now made it possible.

For Lucas’s first 10 months of life, Krista pumped more milk than he could eat.  So in late June, when the the stand-up freezer in the garage was completely packed with frozen milk, we decided we had enough of a stock pile and Krista stopped pumping.  (At one point the freezer was so full of frozen milk that we had to donate some of it.)  There are a thousand great things about having all this milk, including the fact that Krista got to eat and eat and eat for 10 months, and Lucas and his immune system reaped the benefits.  But now, with Lucas a year old and just a couple shelves of the frozen stuff left, it’s time to plan for our post-breast milk future.

Lucas still gets all of his nutrition through a g-tube which somewhat limits the possibilities of what he can eat.  If you ask the GI specialist at Children’s, it totally limits the possibilities, leaving only one option: formula.  Needless to say, we’re not so excited about feeding Lucas exclusively commercial formula for the foreseeable future, and so for a long time we’ve assumed that we would develop a feeding routine using – gasp – real food!  In preparation for the battle over Lucas’s feeding, the GI specialist started months ago to dismiss the real-food option: “Of course there are some wack-job granola hippie-types that actually blend their own food to put through the g-tube, but they usually go completely insane after a couple months.”  Krista was prepared, then, for the argument that ensued a few weeks back when it was announced that we were officially joining the ranks of the wack-job granola hippie parents.

The conversation lasted an hour, and the doctor tried every tactic.  “I really do support you on this, but do you want to cause horrible pain and suffering to your son?” was the starter.  Krista reminded her that Lucas doesn’t have reflux, the cause of her concern.  Then, “I really do support you, but Lucas is just so complicated.”  Krista explained that we’ll do the work of calculating nutrition content, and spared reminding her that Lucas did not come with a mathematical formula.  Then the low-blow: “I really do support you, but have you ever had food poisoning?”  Krista, not so nicely this time, told her that we’re aware that no matter what you feed your kid, we realize you’re supposed to clean the dishes (and tubes) after eating.  And finally, when she was too tired to argue any more, the GI doctor gave us a list of questions to ask of other crazy hippie parents in our dreaded online parent forums.

Although it will be helpful to get her to sign-off on this (our nurses need orders from someone to change their routine), the beautiful thing is that we don’t actually need a doctor or specialist to figure out how to feed Lucas real food through a tube – we’ve got a network of parents who been doing this successfully for years and are more than willing to share their techniques.  Sure, we’re going to need to consult with a nutritionist to try to get a good balance of protein, vitamins, etc, and we’ll need to keep checking in with the GI specialist about weight gain and any other issues that may arise, but we don’t need anyone’s official permission to feed Lucas carrots and apples and tofu and kale.  Plus, we’ve got the Vita-mix.

For those who aren’t familiar with this remarkable kitchen appliance, the Vita-mix is the most heavy-duty high-powered blender you could ever imagine.  It makes peanut butter, liquefies about anything, and can even make almond milk or hemp milk out of, yes, whole almonds or hemp seeds.  And, we picked up the latest edition of “The Homemade Blended Formula Handbook,” with nutrition advice, parents stories, and philosophy about how “tube feedings are part of meal time too.”

We had already started giving Lucas tastes of apple juice and yogurt with his feeds, but the first shot of raw kale and peaches mixed in with his breast milk seemed like a big deal (if only for the pretty green color flowing through the tube.)  We did some more research and figured out that kale, especially raw, may not be the best thing to start off with, so this week we steamed some carrots, blended them into a fine pulp in the Vita-mix, and sent them through the tube, again mixed with milk.  Other than some funny-colored poop, Lucas seems to be handling the new routine wonderfully.

Lucas had a nice birthday and a great week in general.  We’re not sure that he really noticed that anything extraordinary was happening on Tuesday, except that he was forced to wear an annoying hat, and that all of a sudden there were some fun, new toys to play with (not to mention wrapping paper to throw around).  He smiled most of the day on his birthday and was also happy to have aunt Alice around singing to him all week… plus, she brought along a favorite gift: the chewable book!

Our week was busy so it wasn’t until Sunday morning that we finally got to spent a couple quiet hours together with Lucas, reflecting on his first year of life.  It was emotional to re-read some of the things we’d written during a year ago, like the first-ever post to the Lucas Camilo blog, four days after he was born.  The details of that week will forever be etched in our minds, and we recalled not just the many harrowing moments but also the few positive, hopeful ones.  One of the most jarring things was to see that we actually predicted that Lucas had a neuromuscular disease in that first post, only to move away from the theory (based on observations of various specialists) the following week.  It wasn’t until more than 5 months later that Lucas was in fact diagnosed with a rare neuromuscular disease, Myotubular Myopathy.

Another thing that’s interesting is how much our perspective on that possibility-turned-reality has changed.  The thought was devastating at the time, and we continued to hope that his premature birth and low muscle tone were caused by a central nervous system issue, of which there was supposedly a chance of recovery.  We realize now that we didn’t have much if any knowledge of muscle disease, nor had we ever encountered people who lived fulfilling – albeit challenging – lives with such diseases.  Our initial fears were about all the things that Lucas would never be able to do in the world; that of course is still there, but our overall framework has shifted, especially after getting to know this amazing little guy.  Now, rather than thinking too much about the doors that are closed because of his disease, we think more about the doors that have been and will continue to be opened by this experience we’re sharing together.

That being said, we also marveled at how upbeat and lucid some of those early posts on the blog actually were.  There was so much that was unknown in Lucas’s first days and our daily discussions with specialists and neonatalogists felt like a blur.  We somehow managed to stay strong and make it through, even in those moments when the possibility arose that Lucas might not survive.  And it wasn’t just that first week that was tough – our reflection on Sunday helped put in perspective the weightiness of all that we’ve been through the last year.  It felt good to acknowledge to ourselves the huge accomplishment that the three of us had achieved just by that fact that we were all sitting together in the same room, smiling and playing, a full year after Lucas was born.

And of course, it wasn’t just the three of us that made that first year possible.  Another striking reflection was how much support and encouragement we’ve had from friends and family over the past year.  From Burke’s parents and sister and Krista’s mom showing up days after Lucas’s birth and bringing amazing love and support, to a dozen friends coming out early that following weekend to help us move all our stuff to a new apartment, to dozens more who brought plates of food to our doorstep, to every single card, phone call and blog comment (we just passed 1000 comment the other day :)  Indeed, we were somewhat amazed looking back that we had the wherewithal to publish this blog (on August 21, 2009) but we’re sure glad that we did.  It gave people a way to follow our story and be supportive during moments in which we didn’t feel like getting on the phone or taking visitors.

So one more time we want to thank all of you for your love and support.  We look forward to continuing to share our journey with all of you.

Oh yeah, and here’s some video shout-outs for Lucas! (some of these got lost, unfortunately)

[kaltura-widget uiconfid=”11958342″ entryid=”0_ob4ysnyg” width=”400″ height=”333″ align=”center” /]

[kaltura-widget uiconfid=”11958342″ entryid=”0_3c39hmjh” width=”400″ height=”333″ align=”center” /]

[kaltura-widget uiconfid=”11958342″ entryid=”0_o7foncfs” width=”400″ height=”333″ align=”center” /]