Lucas Camilo

It was a good visit to the pediatrician yesterday.  Originally we sort of stumbled upon Dr. Jackson having actually signed up to have her associate, Dr. Lang, as Lucas’s pediatrician.  But it turns out that Dr. Jackson has experience with kids who have trachs and g-tubes, so she’s been really helpful and thoughtful the couple times we’ve seen her.  She has an understanding of the challenges we’re facing but also a sense of humor about it.  For example, when she noticed that Lucas had undescended testicles during our first visit – the least of his worries as far as we’re concerned but something that certain docs in the NICU kept reminding us of – she exclaimed, “no big deal, he won’t be needing those anytime soon!”

On this day she examined Lucas and concluded that he seemed healthy on the whole, though with the possibility of a urinary tract infection given his history of Vesicoureteral reflux (a condition in which the urine backs up towards his kidney).  They took a urine sample and sent us on our way, saying that the other possibility for the recent vomiting could be that he’s getting too much milk so that we may have to cut back on his feeds.  We haven’t heard back about the UTI but we’re happy to report that this afternoon he’s doing a lot better, acting less lethargic and working on an extended puke-free stretch. (On another note, it turns out that DC mayor Adrian Fenty sees the same pediatrician as us – we ran into him in the hallway and he opened the door for Lucas’s stroller.  We were so caught off guard that we didn’t get it together to trash talk his recent teacher firings or any of his other bad policies.)

We also had some more thoughts about some of the ideas we laid out in the January 28 post about doctors, parents, and treatments.  It happens that we’ve both been reading an amazing anthology called “My Baby Rides the Short Bus; The Unabashedly Human Experience of Raising Kids with Disabilities” and one of the stories Burke read early this morning when he couldn’t sleep really resonated with our recent reflections.  It’s called “A User’s Guide to Self-Help Literature” and has some very practical advice about how to wade through all the advice, marketing, and messaging of doctors and corporations in relation to special needs kids.  We should mention that we read some more about the author Glenn Doman – who was part of a team that researched child brain injury and came up with unique treatments for it in the 1960s – and it turns out that many of his methods  are considered unproven or even harmful by many “experts”.  Which isn’t to say we’re ready to discard them, but rather that we’re at a stage in Lucas’s development where we need to take in everything but be wary of dogmas and sure-fire cures; it won’t be one book or program or magic oil that will solve Lucas’s problems, if they are to be “solved”.  For now we’ll settle on hard work, loving community, and perseverance.  Or as the author of the article puts it:

“What we outsiders need is a good pair of army boots to kick down doors and kick recalcitrant service providers’ asses, not patronizing platitudes or signposts to interventions affordable only by the top 10 percent… In the end the greatest hope for people with disabilities – our kids – is inclusion in truly accepting, nurturing communities that practice mutual aid on an everyday basis.  We’re not going to get that from the increasingly corporate education or medical systems, as necessary as some of what they offer may be at the moment.  The best self-help doesn’t come out of a book; it comes from real-world connections, skill-sharing, and organizing to meet our own needs whenever possible.  Don’t ever forget it: you and the kid for whom you care are the real experts.”

And with that we’ll conclude this post and leave you with some favorite pics of Lucas from the month of January…