The Amazing Owen
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Woow!!! Crazy days!!! Good luck this week - that is not a schedule I envy...
Comment By Josephine At 11/1/2011 4:26 PM
Great pics! Love the ones of Owen at home. He's so cute! It was so great to meet you all yesterday! You are an inspiration to so many Hydro families out here :)
Comment By molly At 11/1/2011 4:43 PM

Original Entry:
Meetings and Teletubbies
Yesterday we headed down to Duke to begin a 5 day ambulatory EEG.  Before we spent a few hours hooking up wires we were lucky enough to be able to meet up with the Gareau family.  The beautiful Meagan was at Duke for an infusion today and we were able to say Hi before our appointment.  Below is Meagan and her Mommy Molly with me and Owen:

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And I got in some quality snuggles with Meagan (picture stolen shamelessly from Molly's Facebook post:

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I always feel so blessed when a family allows me to share in the miracle of their little one's very special being!

After our appointment we headed over to the Neurodiagnostics Clinic to get Owen hooked up for his 5 day ambulatory EEG.  The ambulatory bit means that we can take him home and don't have to stay in the hospital.  Of course we won't be spending much time at home in those five days because you have to go back every 48 hours to have the data downloaded from the card - and it's a 7 hour round trip for us so three of the 5 days will be spent on the road.  We thought about getting a hotel for a few nights, but Owen in a hotel is a lot of work and would be very disruptive to Owen, and at least we'll get two days with a normal routine to watch. 

What are we looking for?  We have had several times in the last few weeks when he has acted like he's had a bad seizure, and yet we saw nothing - we are hoping for such an episode this week so we can see if that is what has happened.  We have also been seeing quite a few things that may or may not be absence seizures.  This type of seizure is difficult to determine definitively without an EEG because they are over so quickly that it is hard to say for sure whether or not it is happening. 

Halloween seems to be our holiday that gets trampled on by hydrocephalus.  Here is Owen with his sister at Duke last year on Halloween:

Do you see any resemblance to this year on Halloween?

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I never did get him into his costume this year, it was a very busy day, but he is sporting the same Teletubbie hat!

Here he is sitting on his bed at home, you can see his backpack:

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No, he doesn't have any pants on.  Daddy was starting to put him in his PJ's when I got out the camera.  Why did I get out the camera?  Because he was being so darn cute.  This is one of Owen's greatest talents - he can tickle his own feet:

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We will return to Duke tomorrow and again on Friday.  We're hoping to spend as little time as possible there so that he can spend as much time at home as we can collecting data in a normal environment so we're going to make these very short stops we hope!!!  Now if only they would stop closing large portions of route 86 in NC down to one lane for repaving I'd be even happier!!
 
 
 



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