Thursday, September 17, 2009

Clinic recap

We headed in for short gut clinic today. We gave the usual spiel and an update on the blood situation. (Hint: It's still there.) The good news is that in spite of her bout of throwing up over the weekend, Blaise has grown well since we were there 10 days ago and is now 10th percentile for weight and length based on her corrected age (7 months). She's still not on the curve for her real age, but that's to be expected. They're very happy with her growth. Her color is good, she's very active and alert and seems healthy as can be. The bad news is that the blood still has us flummoxed. We drew labs to check her blood counts. The nurse practitioner will call in the morning with the word on those. We're keeping up with the nightly steroids and the oral anti-inflammatory. Between supplements and actual medications, Blaise currently gets 9 oral doses of something a day. We're going through a lot of oral syringes.

In much more fun clinic news, we were able to catch up a bit with Faith (a fellow Omegaven baby) and her mom. They first came to Boston from Colorado for Omegaven a bit before Blaise's second surgery. Their fantastic news is that Faith is thriving off TPN and her central line came out yesterday. Huge congratulations to their family! We also met Sam's dad, but not Sam himself, as he, unfortunately, was in surgery to get a new central line. Sam's family travels from Wisconsin for Omegaven. Talking with other Omegaven families is always nice because, no matter how hard they try, most people just can't understand what living with short gut is like. Hearing war stories from other parents also makes us realize just how fortunate we were to live in Boston where Blaise got the care she needed with minimal fuss. We wish both families safe journeys home.

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