The Amazing Owen
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The costume is great...and the smile on Owen is even better. It's so weird to say it, but I hope the seizure comes on soon and they get it recorded.
Comment By Kristen At 10/28/2010 4:34 PM
Cutest Buzz Lightyear EVER!!! Hang in there with the long hospital stay - when Teagan had hers, there was a small battery powered unit that the probes could temporarily be connected to and a backpack for carrying it all so that she could periodically leave the room - do they have anything like that for you guys? Then the only missing data from the EEG would be the video data. In any case, I hope they get the data they need so that you guys can finally have some answers and get back to sleeping in your own beds again :)
Comment By Melanie At 10/28/2010 4:53 PM
Hope everything goes well with the study. Kendal had a very long seizure a week ago. Diastat didn't stop it. It took 1 mg of ativan by IV to finally stop it after an hour. We stayed in the hospital over night. Kendal is on 350mg of keprra 2 times a day. Dr Smith is adding Trileptal to the keppra. Did Owen have any bad side efeects from the trileptal? I know the keppra was not good for him. Dr Smith said if we have any more seizures they want to do the study on her too. I hope the study goes well!!!
Comment By Stephanie-Kendal's mom At 10/28/2010 9:11 PM

Original Entry:
Seizure Study - Days 3 & 4
So, we're still here and no seizure recorded, and we're still having no plan to leave anytime soon.  After many discussions and much growling we were able to get some things settled yesterday.  The annoying cardiac harness was removed - Owen does not have cardiac problems and no amount of tape/adhesive/gooey stuff could keep the leads for it on.  The IV was re-wrapped so that it could be checked without removing bandages everytime.  I think we have things down to a manageable situation now - it was a much more peaceful night.

So far the most interesting thing we have learned is that they have seen absolutely no seizure activity, even when they removed nearly all of his meds.  As of 1:30pm today all of his meds are gone now and we'll see tomorrow morning if that produces anything.  I'm not actually all that surprised that they haven't seen anything yet as we have had many EEGs done in the past (4 I think) and none of them has ever shown anything except one that was taken while he was post-dictal (knocked out cold by a seizure) and that one just showed some slowing of brain activity.   This is why we've had to go to long term monitoring, we aren't going to learn a thing until we can catch him in the act.

They say that they normally want to catch 5 or 6 events in a study, but I can't see how we can do that when it's usually at least 7 days in between our events. 

This afternoon they had a Halloween Parade for the kids here.  They came around and gave all of the kids costumes and then lined them up for a parade around the two peds floors.  Owen couldn't leave the room because he is tethered to the monitors, but they have a long cord and we were able to wheel him out into the hallway so that he could watch the other kids.  It was the cutest thing ever!  And since Owen couldn't go and visit all of the stations that they had set up for trick-or-treating, one of the child life specialists brought back a bag for him. 

I really wished I could have taken pictures of some of the other adorable kids, but then you'd have to get permission to publish the pictures.  But I was able to get a few of Owen in the Buzz Lightyear costume that they brought for him:

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As you can see - he's in a really good mood.  In fact that really describes the situation since they have taken away all or most of his meds - he's so much happier!  It had been almost impossible to get a picture of Owen smiling in the last half a year, and today I had so many to choose from that I can't show them all (and get this update done before dinner!).  It has been a breath of fresh air to have such a Happy Owen.  He was waving to the other kids as they went by in their costumes and seemed to enjoy the break from his crib.  Now we go back to the waiting game...

Oh, and yes Sammy - we'll save some of the goodies we got for you!
 
 
 



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