The Amazing Owen
Home Account Search

Add A Comment :
Name :
Email :
        Remember Info?
Comment :


Comments :
Michelle, I am sure this has been a really tough decision for you to make, but it really sounds as though you have made the right choice.
Comment By Josephine At 2/6/2012 11:03 PM
Wow, so much on the mind for you! I hope that when this is in hindsight's view you'll be able to look back and say "I am so glad we had that done!". Thinking of you and little Owen.
Comment By Kristen At 2/6/2012 11:44 PM
You had to make a tough decision on the head circumference reduction thing too, and look how well that turned out. We'll be sending prayers for a speedy recovery. (((hugs)))
Comment By val At 2/7/2012 8:05 AM
Hey there - hang in there and we're here if you need anything!
Comment By Rich Quackenbush At 2/8/2012 8:47 AM
Hey very nice blog!! Man .. Beautiful .. Amazing .. I will bookmark your blog and take the feeds also...
Comment By Website Design Rugby At 2/18/2012 12:40 AM
Testing out the comments in the new release.
Comment By Michelle At 2/25/2012 9:35 PM
Excellent post. This was actually what I was looking for, and I am glad that I finally came here! This for sharing and keep up the good work. I will recommend my friends to read this.Excellent post. This was actually what I was looking for, and I am glad that I finally came here! This for sharing and keep up the good work. I will recommend my friends to read this.
Comment By ICOO iCou7W 4gb At 11/27/2012 3:32 AM
This is a great blog posting and very helpful. DEMI
Comment By BMW Airbag At 12/27/2012 11:47 PM

Original Entry:
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. 

Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.