Kristi
My blogs
| Gender | Female |
|---|---|
| Location | Athens, GA, United States |
| Introduction | I am a first time mom who welcomed my precious son, Joshua, in July 2012. Joshua was born with gastroschisis and was recovering quickly when he tragically suffered a malrotation with volvulus that caused him to lose half of his small intestine including a portion of the jejunum, all of his ileum and the very important ileocecal valve. Joshua was diagnosed with Short Bowel Syndrome, he receives IV nutrition 12 hours a day, and continues to suffer from bacterial overgrowth, allergic collitis, and chronic -sometimes debilitating - belly pain. This blog started as a way to get information out to our friends and family, but it turned into a necessary outlet for me during our 131 day stay in the CHOA NICU. We have been home since December, 2012 and the blog continues to be a helpful release to me, especially during our many hospital admissions. In August 2014, we embarked on a 16 week journey to enroll Joshua in an experimental drug trial for Gattex. We will be making 11 trips from Atlanta to Cincinnati Children's Hospital by Christmas 2014 in search of better treatment for SBS. |