The Amazing Owen
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It makes me smile reading about the return of your happy boy! Some seizure medicine sure can be wicked!! I'm trying to learn and understand better what it is Cayman's Naturopathic doctor does for her to control her seizures without the need of medication, and even better, the remedies are actually helping to heal her brain so that seizing is not a problem. The doctor calls it "remapping her brain". Interesting stuff this man knows. Owen is making beautiful progress!! I love seeing him walk like that.
Comment By Kristen At 12/31/2009 12:04 AM
Oh what wonderful news! What a horrible experience with the Keppra, but I'm so glad that things already seem to be better without it. And how exciting with the walking and using the little noise maker thing!! Well done Owen!
Comment By josephine At 1/1/2010 11:17 AM
How wonderful to hear (and see) Owen's new accomplishments!!! I am always excited to read about all the progress he is making. My daughter started taking Trileptal when she had her first seizure in October. It has worked well for us. She too would get tired after a dose but that subsided within a week.
Comment By Amy Hendrix At 1/4/2010 1:45 PM
God bless you and your inspirational child, Owen! A year ago this month we first learned, at our 20 week ultrasound, that our son would have hydrocephalus. Our son is now 8 months old. He is doing well. As he has grown and developed I have read and reread information from your site, and accessed the blogs about other children with hydrocephalus. I cried when I watched the video you posted of Owen first responding when his cochlear implant was hooked up, and of him playing his little piano, and now, as you lead him along as he is learning to walk. God bless you. You are an incredible woman. I sometimes think about posting our experiences, but it is really hard for me to be so brave and open. I'd like to post a few little videos of wonderful moments we have recorded, like you have of Owen. They convey such joy. Soon, perhaps. Thank you for sharing so much of yourself -- your life, your experiences, and your talents in setting this site up.
Comment By Kristin At 1/15/2010 1:11 AM

Original Entry:
Merry Christmas and Goodbye Keppra
Firstly Owen enjoyed a lovely Christmas with our family up in New York.  For those kind souls that have asked about my father-in-law, we had a wonderful Christmas present in that he was able to come home the week before Christmas.  He has made a tremendous amount of progress since his stroke.  He is able to walk on his own, feed himself and to speak clearly when he concentrates. As such he was able to join us for our Christmas dinner.  For info on Owen's Christmas and to see my father-in-law at dinner you can check out our family blog here.

Secondly there is the Keppra issue.  In past posts I talked about the rage that it seemed to be causing in Owen.  The neurologist had suggested giving Owen vitamin B6 to help with this.  At first it did seem to help.  In the previous two months I couldn't really point to a day where we could say that Owen was in a good mood for more than a few minutes at a time.  After starting the B6 Owen's mood definitely improved.  We would get two or three days in a row where he was in a fabulous mood and back to his old self. 

The problem was that we would then experience a day that was worse than any we had ever had before.  At one point he was so upset that he bit his arm until it was covered in bruises.  Trying to restrain him only bruised him more - Owen is incredibly strong. His face and legs were scratched from his thrashing around. In the end we gave him a dose of Benedryl to knock him out and called the neurologist.  We decided that even though we were having more good days, the bad ones were just getting too dangerous.  The neurologist changed Owen's medication to Trileptal.  Unfortunately you can't just change seizure meds overnight.  We had to wean him off the Keppra first while we slowly brought the Trileptal on board.  But as the levels of Keppra decreased in Owen's system, his good mood noticeably increased.  Owen has been Keppra free for several days now and it has been wonderful.  My happy boy is back.  Today was the first day on the full dose of Trileptal and so far the only side-effect that we have noticed is that he is tired right after he takes it.  His system should adjust to the Trileptal in the next few days and the tiredness should go away.  Owen's tummy has also settled down on the Trileptal - I think the Keppra must have been causing some of the extreme constipation that we were seeing as well.

And finally I will leave you with some videos showing Owen's progress.  Owen now spends almost no time in his walker - it has been parked downstairs for weeks. He wants to move himself and even though the walker can get him much farther much faster, he will fuss in it and want down to crawl on his own.  We have one very determined little man.  He can now crawl up his therapy stairs all on his own.  If he has a wedge or a stair to use to get him started he can sit up on his own.  I think he is extremely close to being able to push up from the floor all by himself. 

So here is Owen taking a few steps with Miss Tessa just holding his hands.  I posted a similar video a few months ago, but it was very short because he only took about two steps and then fell over.  He can now do this all the way across the room and into the next room and so on...


And here is another video that might not seem all that amazing at first glance, but it almost brought tears to my eyes when Owen started doing it.  For Christmas Santa brought Owen a little wooden noise maker with a frog on it.  It's just two round pieces of wood with a string that holds the two pieces together.  The two pieces close together like a clam shell and make a noise.  I have written before about Owen's lack of tool usage.  He has had a similar toy for years and I've never been able to get him to do more than chew on it or stare at it.  At Christmas though, he figured it out almost immediately:


So, Owen's Christmas present was a muscial toy, and Mommy's Christmas present was seeing him actually use it!

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