Monday, July 20, 2009

No Angel-man here

Well, Ben's latest and greatest test results are in. The genetic testing has ruled-out Angelman Syndrome. Good news, I suppose. This is one more genetic disorder that Ben has avoided. He continues to stump the doctors. Next stop will be a pediatric geneticist.

Ben's swallow study showed us that he does aspirate liquid and food into his lungs while eating and drinking. We have some new steps to take to avoid this, and so far so's been about a week. With a little help from Ben's nutritionist, and my new handy-dandy food grinder, I'm hoping to expand his diet and help him put on a little weight and build some muscle.

This will be a busy week for Ben. He will be seeing his eye surgeon tomorrow morning, to determine if he'll need a second eye surgery. Tomorrow afternoon, he'll have a meeting with the Early Intervention team to establish his goals for the next six months. (I'm pretty sure we're adding two new therapists to the team - water therapy and speech therapy.) Next, on Wednesday, he will see a new pediatric pulmonologist to check his lungs for any damage from the aspiration, the bouts of pneumonia, and all the interventions he received in the NICU. Then, Thursday and Friday are PT and OT sessions. Yes, there are a lot of people for Ben to charm this week.

In addition to all of his appointments, he is currently on a round of antibiotics, oral steroids, and inhaled steroids to fight off a respiratory infection that has made it's rounds in our family. Unfortunately for Ben, a virus that causes a little cold for most of us can land him in the hospital.

All the medical stuff aside, Ben's personality continues to grow and shine through more and more each day. He's babbling a lot more. He's trying SO hard to crawl. He is in general just the sweetest and happiest kid you could ever ask for. I find myself so grateful today to have two such amazing kids as Sarah and Ben.

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