Well we will just jump in here. Had a doctor's appointment to follow up for the UTI and the touch of pneumonia and all seems to be well. We went ahead and did another blood draw for the Cystic Fibrosis DNA test as the last test seemed to have been lost. So now we wait, again.

Welcome to our journey. Its already been four years in the making so I'll start at the beginning and we'll go from there. Naomi was born September 11, 2003 on her grandmother's birthday 3 months early. This was a surprise to us all since everything in the pregnancy seemed to be going well so far, but apparently she was in a hurry to meet the world. Naomi did fairly well as a preemie in the beginning but as the weeks went by it became more apparent that there was more than just that going on. Geneticists got involved and to this day we still aren't quite sure what is going on, everything comes back normal, but we know her normal is different from ours. The best that can be said is it is something similar to Cornelia de Lange syndrome or Coffin-Siris.

Anyway she had her first surgery at 6 weeks, a g-tube (feeding tube connected to her stomach) and Nissan-Fundoplication (tied a knot at the top of her stomach to prevent her reflux). Since then she's had tethered cord release surgery, a mediport placed, her adenoids removed, her gallbladder and its stones removed, tubes in the ears, and this summer her tonsils taken out and adenoids removed again. This has all been broken up with varying hospitalizations for chronic pancreatitis, and impaction, internal bleeding, and just being sick. But I tell you what this is a tough kid who always seems to bounce back and is amazingly happy considering.

For those of you involved in our lives this blog will be hopefully be the best way I can tell you what is going on with her. So many times things happen so fast, and those of you who love and pray for Naomi find out after the fact. I can't tell you how much we rely on those prayers and the support of our family and friends who love Naomi and understand what life with her is like. So a big part of this is for you too, so you can be a part of that journey we started four years ago, however long it lasts.