Wednesday, May 18, 2011

(Heart) Breaking News.

There are things that I have hoped for throughout Addison's short life. Big hopes, like that she will be safe and pain-free.... and little hopes, like that she will be able to control her bowel movements and no one will know she is 'different' when she is school-age. I hoped that one day this would all just disappear and she would poop like any other baby. I hoped that from that first x-ray, they would find something simple, something with an easy fix.

Over the past couple of days, Adam and I have been sitting on some important news. We needed time to discuss it together, time spent soaking up information and asking lots of questions before we shared with everyone what we have learned.

Our team of doctors believe that Addison does in fact have Hirschsprung's Disease. It is Ultra Short Segment HD, which means the area missing ganglion cells is very small, too small to find accurately with a biopsy - which is why we cannot get a clear 100% confirmation of her diagnosis through surgical testing.

There is a lot more to write.... but for now I will simply share that she is not a candidate for surgery, so this will most likely be a problem she has for the rest of her life. I will post again later with more information. My head is just all over the place and its hard to explain it well.

Today she was diagnosed with a complication of Hirschsprung's called Enterocolitis. That's what our 'stomach bug' turned out to be.  It will require several weeks of medication to get back under control. In the meantime the most important thing is to keep her hydrated. She also has a yeast infection and its making her poor little butt really painful.

Be back later,

1 comment:

  1. Praying that your family find peace amidst this time. Hoping Addison can get more comfortable in the coming days. Leah