It's been some time since the last post so I thought I would type some quick updates. Nothing too exciting has occurred. We are waiting on the genetic test for Barth's and expect that to be here sometime in November. We visited with a new geneticist who suspects Abram does have Barth's Syndrome, is running some blood and urine tests to confirm a "clinical diagnosis" while we wait for the "genetic diagnosis". I am learning genetics are very complicated, so if Abram has a mutation on the "Barth's Gene" it may or may not be called Barth's. . . Abram continues to gain good weight and is above average in his age group for weight, but still at 3% for heighth...this would explain the Barth's Syndrome size status (typically shorter and smaller). Abram had another echo and his heart shows no more improvement, but no worsening. We continue to meet with GI and discussed possibility of a g-tube in the future (tube that goes directly in the stomach rather than down the nose). We are a little tied on this, there are pros and cons to everything. We are waiting on hematology to come up with a plan to treat Abe's neutropenia so we can start living again and be around others. Starting with occupational therapy to help with getting back to oral feedings, and have a swallow study planned sometime in the future before we can even consider oral feeds. The GI doc wants to make sure he is not aspirating because he chokes while he drinks. We are reading about Barth's and feel this is a probable diagnosis. So much to know as it's a very rare and complicated illness, which may mean future trips to a different state to see a doctor who has treated boys with Barth's since no one in the KC area has. Abram continues to be a content and happy guy. Very tired, napping frequently but keeps us busy as his feeds continue when he's sleeping or not! Tried a new med for vomiting but it made him vomit more, so we are reducing the calorie of his formula to see if that helps. He's currently on an increased calorie anyways for weight gain, and it's obvious he is not needing that!