May 10

I think I heard Marek laugh today!  It was kind of a giggle, but it was definitely there.  He’s definitely a very chatty guy, with coos, gurgles and squeaks.  I’m guessing he gets that from me…  Hopefully, my squeaks are a bit more understandable though…

Merv hasn’t been feeling well the last couple of days and I can sort of feel a bit of a sore throat coming on.  I really hope we don’t get sick.  We really can’t afford it.  Ben seems fine so far, although he had a spill yesterday and cut his head on a piece of plywood.  He has a nasty gash on his forehead.  He didn’t need stiches or anything, but it does look pretty bad.  He looks very cute with a big Blues Clues bandaid on his head.

I’ve been asked about Marek’s diagnosis.  It’s incredibly complex, but I’ll do my best to sum it up.  He has complex congenital heart disease (CHD) and heterotaxy.  The CHD consists of a whole host of heart defects including holes in his heart and plumbing that doesn’t hook up properly to his lungs.  His first surgery was to put in a shunt so that he’s connected from his heart to his lungs and also to remove an obstruction.  He also has right atrial isomerism, which means that his heart kind of has two right sides instead of a right and a left, if that makes any sense.   The heterotaxy, or situs inversus, basically means that his organs are mostly on the opposite side that they should be on.  For example, his heart is on his right, rather than on his left.  Also associated with heterotaxy and right isomerism is asplenia, which means he has no spleen.  On top of all that, his bowel is malrotated, which means it’s placement is a bit weird and could potential twist – which would be a huge problem.  I guess to sum it up, his organs are all mixed up inside.  Hopefully that helps, it’s kind of a crazy diagnosis.  We should know more about his heart defects before his next surgery.  I’ll keep posting as I know more.  Feel free to ask questions and I’ll do my best to post answers.


1 Comment

  1. Peachy said,

    May 11, 2008 at 2:06 am

    umm.. does that mean he has problems taking a 2. Where’s the pic of the damaged babu.

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