(We’re here until wednesday morning, if anybody’s looking to track us down for FUN…)

(I don’t actually have one, but I think I need to… wow).

(Unrelated, The Surge related content here)

He’s my sister’s boyfriend [aka my brother outlaw]‘s nephew (in case you’re wondering about the title).

Now, little Bo is a cute little rapscallion (as are most kids at that age), and having two little ones of my own, I know how stressful that time can be for a new parent. But I have no idea what kind of stress his parents are going through, because Bo got dealt a rare (and fairly tough) hand: His small intestine doesn’t work.

There’s a technical name for it (Microvilli Inclusion Disease, or MVID for short), but it’s incredibly rare. There are less than 10 cases a year in the US, as far as I know, and none of them have been born to a hollywood celebrity, or a senator, or some such, so there’s no foundation around to help these people out, just the best medicine modern insurance can buy.

The treatment for this, and this is the part where the hand gets even tougher, is something called TPN. It’s something originally designed for short term use in patients that can’t use a feeding tube, and chronic usage can eventually cause liver failure. There are very very few adult survivors of MVID, but very few die from lack of nutrition.

Fortunately, there’s an alternative that’s starting to gain traction in the US thanks to an experimental program at Boston Children’s Hospital, called Omegaven. In just a few months in Boston, little Bo has lost all his jaundice and is a normal healthy baby boy. (other than that feeding line). This treatment, while still experimental, can hopefully help kids with Short Gut Syndrome (SGS) and MVID to live normal, happy… well, let’s just say: live. And that’s something pretty amazing.

Update: The Omegaven wikipedia article has a link to this WSJ story from 2006, A Doctor’s Push For Drug Pits Him Against Its Maker,
which details some of the regulatory hurdles the Boston researchers have faced.

You just keep clicking random.

You win if you get one that you’ve already seen in the same session.

You lose if you get one that’s not funny.

I like it because I always win.

Whenever there is a coordination problem, someone says, ‘Hey, let’s create a process.’ Now you have two coordination problems.

Gabby was great. Rebecca was great. Theo was great. I got a phone call at work from Rebecca, that she was at the ER and Theo was at the downstairs neighbor’s. Other than a slight possibility of a lack of fingernail, there should be no long term damage.

Still, stressful on everybody, especially when you add it all up.

And in reality, most of the afternoon the picture has been more like this.

as I recently discovered on NPR radio, humans have difficulty sleeping first nights in rooms

I was just talking yesterday about how I don’t trust my brain to react to stimuli in the expected fashion. More evidence for that–I always sleep better in strange places (on the road, when I was a kid visiting family…).

• Didn’t get to the El with time enough to spare to grill an aldermanic candidate outside the station.
• El car had a stuck door and was delayed.
• Took two swipes to get my door badge to read, while someone stood behind me waiting. The first time I muttered “one of those days?” to myself.
• Dropped my bagel (bagel friday, huzzah), half face down on the carpet (and spilled coffee).
• Had milk on the bottom of my cereal bowl and got it on some papers on my desk I need for class this afternoon.
• Thought, “wow, it really is one of those days.”
• Now I’m blogging. Ugh!

Sample search: If you liked Winning, by Jack Welch, you’ll probably hate Watership Down, The Princess Bride, stuff by Neil Gaiman and Margaret Atwood…

I think I have a new reading list from this.