Thursday, June 30, 2011


The Princess is resting fairly comfortably today so I'll take this opportunity to try to play catch up.  Surgery yesterday was the "smoothest complicated case he's had in a long time."  A good thing to hear from your neurosurgeon, for sure!  Marissa had loculated third and fourth ventricles, which were fenestrated - yet again; the shunt catheter draining her right lateral horn was embedded in tissue rendering it essentially non-functional, it was 'cleaned up'; and her third ventriculostomy had once again closed itself off, so it was reopened.  It appears that she may be having issues with intermittent overdrainage which causes her ventricles to collapse and tissue to "stick" to the catheters and close up the aqueduct.  Her neurosurgeon decided it was time for a second valve so he went ahead and installed one in her distal shunt tubing.  It was a big procedure with lots accomplished!  She had a pretty good night - minimal cardiac issues and her biggest complaint today seems to be a sore throat.  Certainly she wasn't quite ready to be intubated again this soon after her tonsillectomy.  We're hoping to bust outta here later this afternoon.

In other news, we've had a lot of house guests this summer. We've had Frogly, Snakely (twice), Toadly, Spiderly, Turtlely, are you seeing a trend here, and Billy the Butterfly.  We have a pretty sweet system actually.  Our 'friends' come to visit us at Camp Fenske for a few days, enjoy their little vacation and then return to their families.  Esen gets to enjoy them, gets to learn a little about them, understands the importance of respecting nature, and I don't have to clean stinky animal cages or deal with the explaining the unfortunate demise of said animals.

The boys had a great camp out a few weeks ago and Esen has been begging to do it again.  Perhaps this weekend, Daddy?  It's only going to be 96 and humid with a heat index of 105+!

Happy, happy girl for a few days last week!

Marissa is loving all the time we get to spend outside.  I've had her in the little pool once and she really enjoyed splashing around.  It'll be a while now with the new incisions before we can do it again.  She loves her swing, watching her brother do acrobatics on his bike and even just hanging out in her wheelchair breathing in the fresh air.  Esen, of course, would rather be outside than anywhere else.  He is always  busy with bike riding, mud-mess-making, chalk drawing, water spraying, running in circles or some other craziness!

I've been running again - or wogging as Kevin lovingly refers to it.  My alarm goes off at 4:45 every morning (except one weekend day) and I get out before the house wakes up.  It's been well over 15 years since I've done any serious running so it's going to take some time, but I'm working on it.  I'm doing the Cool Running Couch to 5K Running Plan and it's amazing how...dare I say...easy it's been.  Four weeks ago I couldn't jog for 30 seconds and now I'm comfortably doing the intervals in week 4 and even pushing myself on some longer weekend routes.  Sadly, I've gained 2 pounds (yeah, it's muscle, no doubt), but hopefully, the 50 I need to lose will fall off on the roadside somewhere along the way! 


Michelle said...

It is so great that you are disciplined enough to exercise in the am...I am just too lazy to get out of bed in the morning for any Me or Us time! Sounds like your family is thoroughly enjoying the summer (when all are at home!haha)

Anonymous said...

Glad to hear surgery went well and hope you can all be home together very soon x

China Dreams said...

Glad the surgery went well. You never seem to have a break, or a dull moment. I'm going to check out your running plan now :)