Lucas Camilo

September has been the month of many outings for Lucas.  Our Labor Day weekend trip to the woods proved that we could pack well enough to make it through an entire weekend.  The momentum of that successful journey convinced Lucas (and us) to accept his first ever invitation to visit another home.

The invitation came from the Gomes family.  Burke got to know Yves, his aunt Dominica, uncle Henry, and cousin Harold through the immigrant stories project he’s working on, and we wrote about Yves and Harold a while back.  Yves has been the center of much deserved media attention since he won a stay on his deportation a couple months ago, but we were especially excited to get to hang out with Harold.  Harold has muscular dystrophy; a few years ago he got a tracheostomy and he now uses the same vent as Lucas.  But unlike Lucas, Harold is our age.

Although Krista and Lucas were meeting the Gomes for the first time, the dinner felt like a gathering of old friends.  We jumped right into talking about vent settings, suction techniques, and the adventures of home nursing.  We talked with Dominica about the family learning home trach care.  Harold told us the story of getting his trach, we told about everything we’ve learned about Lucas’s disease, needs, and abilities over the past year.  Although this may not sound like the stuff of intimate dinner conversation, it was.  And, among other things, we also got to hear more of the Gomes family’s immigration story as well as talk basketball, Yves and Burke’s shared passion.  Many, many thanks to the Gomes for a wonderful evening!

We talk about getting used to packing up for a Lucas journey, but the reality is that the list of supplies is so incredibly long that there’s often something we forget.  For our trip to the Gomes, we forgot to switch Lucas’s cloth diaper to a disposable one before we left the house, and we forgot the baby wipes, which we ended up desperately needing.. leading to an awkward situation in the middle of dinner :)  Last week we went to the doctor’s office and forgot Lucas’s food, feeding tube and the tray for his new stroller that carries his ventilator and suction machine.  We came up with creative solutions in each case, but there are so many other things that we absolutely can’t forget.  Suction machine and catheters.  Resuscitation bag. Extra trachs. Batteries charged on all the machines and/or back up power sources.  Fortunately, two of the machines we can’t forget – the vent and monitor – are always attached to Lucas, so forgetting them would be like forgetting our heads.  Which on some days seems possible.

Nonetheless, we still made it out to MORE adventures this past weekend.  It was Sha’s birthday this week so Lucas insisted that we roll up the street to his Sunday afternoon party.  Lucas had a good time, and he got to sit at the table and watch a card game, play with a balloon, and then lie back in the yard and watch the afternoon turn to evening.   On Saturday Lucas’s uncle Isham celebrated his birthday at the River House, and Victor agreed to come hang out with Lucas while the two of us went out for the evening.  It was yet another first – the first time both of us left the District of Columbia with Lucas at home.

On Tuesday Lucas’s Nonna and Papa arrived in DC to hang out while Krista goes to Oregon for an extended weekend.   On Wednesday morning all five of us went for a walk with Lucas strapped into his newly re-fitted fancy stroller, and later that day Krista hopped a plane for the west coast.

Though the increasing ease of car and stroller journeys with Lucas is exciting, it’s still hard for us to not be able to take longer trips.  Burke traveled to Seattle in August and now it’s Krista’s turn to go to Portland.  In both cases it’s bittersweet: nice to be able to go back to where we grew up and visit our families (for the first time in over a year); but sad to not be able to take Lucas, and difficult to have to take turns and not be able to all travel together.  For now, Lucas’s condition is still too fragile for air travel but that will change in the future.  And in the meantime we’ll keep rolling to the park and driving to the woods, at least as long as the beautiful fall weather allows us…

We figured it’s time to reward our loyal readers with a shorter post.   So here it is, a test:

Which one is Lucas?  And who’s the other baby?  (Hint: check out those ears!)

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.

Over the holiday weekend we ventured out for our first ever “family vacation.”  We were fortunate to have been invited to stay at the Randolph’s house in Clark County Virginia, known to all as the River House (it’s near the beautiful Shenandoah River).  Below is a photo story of the experience using some fun software that Burke discovered through his job… just click on the first thumbnail image to start the slide show and then click on the right side of the larger image to continue scrolling through.

Although he missed his daddy, Lucas had a great extended weekend with his Gramma Susan.  Lucas seemed excited to have a new audience (of one) who appreciated all his developments: his singing, his increasing precision of head and arm movements, and his late-night goofiness.  In fact, we had thought that he was starting to develop a slightly earlier-to-bed routine, but while his Gramma was here he pulled out all the stops to stay up late playing and giggling.  Lucas still doesn’t make any sound when he laughs, but that somehow makes his super-wide-mouth full body laugh all the more irresistible.

Lucas’s great passion these days is reading.  Or more specifically, page turning.  While most toys seem to bore him after a short while, he lights up every time he sees a book coming his way.  It doesn’t seem to matter to him whether it’s a book he’s read a thousand times or for the first time, whether it’s a cardboard page book, a cloth book, or a paper book.  His Gramma obliged him over and over and over again, holding books at just the right angle so he could grab and turn the pages.  In the video below he’s so happy turning pages that his feet are wiggling in delight.