We had a meeting with outpatient services, an LPN, one of Spencer's docs and our speech path today. They have a meeting with parents every once in a while to address concerns that may be left unanswered from rounds and such.
We should be getting another orthopedics consult and a urology consult. They are also going to alter his formula so he starts gaining more weight.
We told worst case scenario is a trach or distraction or other surgery, which would keep him in another six weeks or so. Best case is they just let him grow.
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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.
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