Monday, July 15, 2013

Four Years Post-Op

Wow, my little boy is four years old!  Unbelievable!  Just a quick post to say we went in for his annual chest x-ray and surgical post-op appointment and they say all looks good.  His lungs are growing as expected and they're happy with his scar and chest.  They will keep an eye on his spine to watch for signs of scoliosis but right now it looks completely normal and we have NO more checkups for two years!  Wow!  He's 43lbs which makes him big for his age but he's also quite tall for his age so we're looking at potentially well over 6 foot tall when he grows up (not that I always believe their growth will continue on the same curve forever).

A little bit of good CDH news, one of the studies we participate in had a really impressive year in terms of finding out a lot about what causes CDH and I thought I'd share.  They do a good job about writing in readable language.  It talks about the gene they found that caused CDH in several cases and are examining the correlation it has with severity.  As many are aware, CDH is especially difficult to figure out as most times no other family members have it, sometimes comes with other birth defects and is sometimes isolated and while it's fatal in 50% of cases in other cases like Jonah it's the only birth defect, is surgically corrected and does not cause any future problems.  They are also researching how NICU practices improve outcomes after the child is born.  In case you're finding this post quite a while after I've written it, it's under the Winter 2012 heading.

Here's a few photos of Jonah over the past year, he's loving being a big brother and it's amazing how much he's grown up over the last year.  He starts 4 year old kindergarten half day in September but right now is enjoying spending 2 days a week with his grandparents for the summer, they get into lots of mischief!

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