Life as a Leach

We went to CHOP orthopedics today and are still reeling from all of the information.  I'll do my best to explain everything, but I'm still processing myself.  When Dr. Anari came in, he didn't beat around the bush.  He told us he had spoken with the pulmonologist we saw last week and that it's obvious we are seeing a decline.  While the kyphosis looks to be about the same on the xray, there could be subtle changes that could be pushing Abby over the edge, so to speak.  Then he proceeded to tell us that Abby was one of his top two or three patients in terms of difficulty, complexity of the chest wall, and high risk.  Everyone has to be good at something, right?  😒 He laid out 3 options for us to consider. 1.  This is the most aggressive option.  Abby would be put in a halo for several months, then she would go into surgery for a removal of a section of her vertebrae.  It is called a Vertebral Column Resection and you can read abo...

A new video was published today about Thoracic Insufficiency Syndrome at CHOP.  So many of our friends are in it, as well as all of our surgeons, doctors, and nurse practitioners with the Center!  It's almost a family reunion video for us!  Of course, our beloved Dr. Campbell is at the center of the story because he is the amazing creator of the VEPTR.  So many families are watching their children thrive, thanks to his brilliance and compassion.  He is a wonderful man. If you are interested in learning more about Thoracic Insufficiency Syndrome and how it affects kids like Abby, please watch the video.  The VEPTR life is hard, but it gives us so much hope for the future.