Lucas Camilo

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!