Thursday, December 5, 2013


The above photo represents a very scary and discouraging issue.   For the past 2 plus years, DHMC has been without a pediatric orthopedic surgeon.  Ambrose had been seeing the previous Dr annually, keeping tabs on his scoleosis and his multiple skeletal issues.  For the past couple of years I have been increasingly concerned that his curve seems to be getting worse.  None of his various specialists paid much attention.  However, recently, after ruling out other culprits, his pulmonologist  felt that his scoleosis may be the cause of his worsening respiratory issues.  When I heard they had finally found a new Ortho Dr., I was very excited for him to finally be seen. I was hopeful that he could perhaps try some kind of brace, but concerned that might restrict his lungs further.  
Well, I was very upset to learn that Ambrose's scoleosis is now measured at 90 degrees and considered severe and beyond repair.  A brace would not be an option for him because of his respiratory compromise and also he is beyond what the brace could do.  I already knew that I did not want to persue spinal surgery as I had been told by a PICU attending that he would never recommend it as he had seen kids like Ambrose do very poorly after such surgeries.  I also learned that it is highly unusual for someone as young and small as he is to have developed such severe scoleosis and that the hardware they use in these surgeries is actually to big for him.  So I was told "surgery isn't even an option."
His right lung (seen on the left above as image is reversed) is very squished.  His ribcage is twisted and sticks out in the back on his right side.  I asked the Dr to look back in the computer to compare it to an older image.  She found a chest xray from 3 years ago and measured the curve at 40 degrees.  So in the 3 years that no Dr was watching, his curve went from 40 to 90 degrees and is now "beyond repair."  It cannot be allowed to get any worse!!!  The only thing that this Dr. suggested was having a custom molded seat back made to prevent him from   curving any more than he already does when he is up against gravity.  We are looking into this now.   I am optimistic.

OK so I cheated a bit on Ambrose' Halloween costume.  I made this gnome costume a couple of years ago for him and he looked so darn cute in it.  Since his new diagnosis last year, following his whole exome study, I have wanted to modify this costume and make him : a  HUMAN GENOME

Of course he doesn't have a devilish bone in his body, but I couldn't resist.  He looks so darn cute!