The Amazing Owen
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Surgery Dates and New Features
So firstly I realized that I had never updated the blog with the actual surgery date.  Owen will have his Chiari decompression surgery on March 14th.  While I understand that it is a totally unrealistic idea - I just wish that when you decide to have surgery that they could put you on the schedule for the next day.  The month and a half of waiting is really hard to do, but I think that over the years I have gotten at least a little bit better at it.  It at least gives us some time to prepare and get things in order so that we can concentrate on just the surgery and the recovery if we have all of the other daily stuff taken care of.

Part of the preparation is putting in a bit of time upgrading this blog.  It doesn't really look much different, but emails have not been going out with the updates lately (who knows what they did on the servers to make that stop working) and I got that fixed (I hope).  I also have really wanted to add the ability to have the blog show up in News Readers and to have the update times work properly for those using a Blog List in their Blogger Blog (say that three times fast).  I have finally managed that.  You can follow the link on the right that says "RSS Feed" and copy the address from there into your Blog List widget on Blogger, or into your News Reader or you can just copy it here: 

Otherwise we're just hanging out and enjoying the wildly swinging weather. One day we're laughing in the sun:


And even getting to have our lessons with Ms. Pat outside:




With big thanks to Ms. Pat for being a good sport and joining in the outside fun!

But then in the blink of an eye we were out playing in the snow...


Not a bad way to pass the time!
Must Have Been Missing the OR
OK, this one is going to be brief by my standards because I'm seriously needing my bed, but I know that family and friends are waiting to hear the results of today's exams and I wanted to get something up here tonight.

As mentioned in my last post we were headed down to Duke today to do a detailed CT of Owen's cerebellum and upper spine.  Owen has a Chiari malformation which I've mentioned before (read about it here) which is where his cerebellum pushes down into his spine.  We have known about this for years, but since it didn't appear to be causing any problems we have not done any surgery on him to correct the situation.  When he had very little mobility before his head reconstruction we really couldn't tell if it was affecting his legs or not, but now that he is upright the evidence would suggest that perhaps it is causing an issue. We have also had a lot of problems recently with him choking on liquids.

So today we did a detailed CT scan of his upper spine and cerebellum (Owen can't have an MRI due to his cochlear implant).  The scan showed that the Chiari has not worsened from previous scans, but it has also not improved.  The hope has been that with the pressure lowered in his head after shunting that the cerebellum might move out of the spinal column on its own.  This has not happened. 

After much soul searching and talking with Dr. Grant today, we have decided to go ahead with the surgery to decompress his cerebellum.  There are no guarantees that this will make it possible for him to walk, but it is his best hope.  Owen also has a lot of unexplained pain, and Chiari's can be quite painful so we are hoping this might help him with that as well. And maybe he'll stop spluttering through his juice. It is a fairly major surgery that will take 6-8 weeks of healing and will require some therapy to get back to the head control that he has now as they will cut the muscles in the back of his neck to get to the upper spine.  But in the long run we are hopeful that this will improve his quality of life.  His surgery will be in mid-March and I'll post more details as we get closer. 
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