Lucas Camilo

Lucas is not actually that into drawing but he sure does love eating the markers!

Lucas has been doing really well lately, making lots of progress in therapy and continuing to expand his sign-language repertoire. He’s been loving taking trips in the car – last week we drove out to the Aquatic Gardens in Southeast DC, today we went to Takoma Park Jazz festival – and is much more engaged and aware as he cruises around in his kid kart. It seems like everyday Lucas does something new and cool.

We’ve had some sometimes revealing, sometimes challenging visits with doctors and healthcare professionals recently.  A few weeks back we finally went to Children’s to see the neurosurgeon regarding Lucas’s MRI in April (a rather harrowing adventure if you recall).  He assured us once again that Lucas should not get a VP shunt (which would help drain fluid from his brain) despite the fact that his ventricles remain large from hydrocephalus.  Since the ventricles do not appear to be growing at a rapid rate or exuding pressure on the rest of his brain, a shunt is simply not worth the risk associated with surgery, infection, etc.  We expected this answer and were satisfied with it.

But his answer to our question about other possible effects of the intraventricular hemorrhaging Lucas had at birth was surprising.  In his opinion, the MRI shows a reduced amount of white matter in Lucas’s brain which could ultimately impact his development.  We had allowed for the possibility that the bleeding in Lucas’s brain when he was born could have led to other minor adaptations in his brain, but we hadn’t heard anyone talk about reduced white matter (perhaps there was a mention early on but it didn’t seem important next to everything else).  As it turns out, the role of white matter in the brain is somewhat nebulous, and the neurosurgeon didn’t seem all that concerned about Lucas’s lack of it.

According to this Wikipedia article “White matter is the tissue through which messages pass between different areas of gray matter within the nervous system. Using a computer network as an analogy, the gray matter can be thought of as the actual computers themselves, whereas the white matter represents the network cables connecting the computers together.”  It goes on: “The brain in general (and especially a child’s brain) can adapt to white-matter damage by finding alternative routes that bypass the damaged white-matter areas, and can therefore maintain good connections between the various areas of gray matter.”

So what to make of this?  First, everyone agrees that Lucas is intelligent and does not appear to have cognitive delays, and thus our initial reaction was to not be worried.  We did inquire within some of the Myotubular Myopathy support groups and found that other boys with MTM have also had issues with white matter.  We want to talk to other doctors and specialists to learn more, and in fact our next opportunity will be when we visit the MDA clinic at Children’s on Thursday.  And we’ll continue to do more asking around and research on our own as well.

Next up was a visit by two therapists as part of an Individualized Family Service Plan (IFSP) assessment to re-certify Lucas for early intervention services.  It’s been nearly a year since his first such assessment and Lucas has come a long way since then.  Still, since we’ve contracted the physical, occupational, and speech/language therapist ourselves, it’s never been totally clear how early intervention helps us.   Mostly, it ensures that Lucas can get coverage for therapy through Health Services for Children with Special Needs, our secondary insurance.

Lots of special needs parents tell horror stories about the IFSP process and there’s no doubt it’s a strange ordeal – to have people come into your home and “rate” your child and your family as part of an institutional decision-making process which may or may not allow you to have coverage for important services.  So we were pleasantly surprised about how easy the whole interaction seemed.  It helped that Lucas was in a good mood and that the therapists were nice people; ultimately they recognized two things that we already knew: 1) Lucas is a smart kid, and 2) he needs lots of therapy.  They recommended that he continue to get physical, occupational and speech/language therapy, and the process also helped us articulate some of our hopes/goals for Lucas in the short and medium term.

Finally, last week we made out first ever trip to the urologist (adding another specialist to Lucas’s already long list of docs).  Lucas, like many kids with MTM, was born with undescended testicles, which can lead to health concerns but was nevertheless low on the list of things to deal with back when he was born (as his pediatrician once remarked, “no big deal, he shouldn’t be needing those anytime soon!”)  We won’t go into details on this point since Lucas would probably veto this as an in-depth blog topic if he had the choice, but the final word is that we may at some point choose to do a minor surgery that would mostly resolve the issue.

Despite the uncertainty of the white matter issue and the possibility of having to subject Lucas to another surgery, we can’t help but feel pretty good about where he’s at right now in terms of his health and development.  And so we’re planning a big road trip to New York and Boston at the end of June… but more about that in the next post.

Chillin' on the grass at the Takoma Park Jazz Festival (thanks Isham)