It's been forever since I've posted- we're plunking along.
Spencer is doing fairly well. His feeding tube was removed last March and after the initial hiccup, he's enjoying his ex-tubie status. He's slowly making progress in feeding himself.
He is getting awesome at using his walker. He walked about half a local mall and back the other day. Today he walked himself in to therapy for the first time rather than getting wheeled in.
He's enjoying being a big brother again. We had our third (and last child) in May. I can't wait until Nathaniel gets a bit bigger and can start interacting with Spencer. Right now Nate kind of just sleeps and eats and Spencer is fairly happy to ignore him.
Our long awaited heart surgery is early next month. For a while there we thought Spencer was going to have to have open heart surgery. His cardiologist has decided that he is pretty confident that he can close his ASD holes in the cath lab. Heart surgery scares me, but I'm ready for this to be over. We've had this surgery hanging over our heads for a long time.
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I started this blog when my son was diagnosed with a clubbed foot while I was pregnant. His clubbed foot is one of dozens of diagnoses now! Shortly after birth, he was diagnosed with Pierre Robin Sequence. Spencer was diagnosed with Say Barber Biesecker (Ohdo) Syndrome in April of 2012. We recently found out he likely also has Genitopatellar Syndrome. In spite of all his medical issues, he's a happy and fairly healthy kid who is always keeping us on our toes.
