The Amazing Owen
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Go Baby Go!!
Wow, what an amazing few weeks it has been! My apologies for being rather out of touch with the blog community for the last few weeks - I got a new computer for Christmas and it has been a painful upgrade, leaving me in limbo between the two.  But I think we have that mostly solved now and I should be able to join the world again.

But what has really been amazing has been Owen's progress.  Firstly, since stopping the Keppra his mood has just been incredibly good.  You don't realize how rough things have gotten until they suddenly get better and it's like the sun coming out.  The trileptal has been a much better drug for Owen.  The only negative side-effect so far is that it makes him very sleepy right after he takes it. For a while he was falling asleep during therapy and at school, but we've been tweaking the times at which we give it and the dosage and I think we've worked out a schedule that lets him do just about everything he needs to do. 

On January 5th Owen went in for his last cord blood infusion.  We decided to use the last set of cells because this is such a huge time of learning for Owen now that he can move his head.  It was a fairly long day.  You see Owen didn't want to have an IV put in him and he felt very strongly about it.  But Dr. Kurtzberg worked her usual magic and after a couple of hours, with 4 people holding him down and on the 4th attempt, we finally managed to get the cells in:



After his last infusion it was much easier to tell if he was making more progress because he had completely stagnated for so long.  When he suddenly started signing we knew that things had improved.  This time we are in a period of incredible changes, so it will be much harder to tell.  However, he did finally hit a milestone that we have been trying very hard to meet for three years.  And here it is, Owen has learned how to clap!:


It may not seem like a big milestone, but we've tried soooo hard to teach him and he finally got it, so we're very happy!

He's just doing something new every day.  Owen has never been able to get that big head off the floor enough to even hope to sit up on his own.  But after his surgery his head control has gotten better every day, and now he can finally do it - he can get himself up off the floor and into a sitting position all by himself!


And Oh the Places He Can Go!! (With all respect and love to the great Dr. Seuss)  I've saved the best for last.  Before Owen's surgery Owen had managed to take a shaky step or two on the parallel bars that his Uncle Richard gave him, but it always required a rather great deal of support for his torso from someone else and he always fell over after just a few seconds even with support.  That last video I put up of him last October (which you can see here)  which showed him taking a few steps was one video of about 20 that I took that day where he couldn't do it at all, and in the split second before and after that video he had fallen over.  But now.....check out this video where no one is supporting him at all!


So, it has been a wonderful month.  We have our happy boy back and we are just giggling with all the progress he is making!
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