Wow! I haven't updated in a while. Spencer is doing great! We have graduated to wearing his braces to 12 hours a day...which for him just means at nights since he is an awesome sleeper. He is starting to attempt to stand on his own and nearly has the getting into a sitting position thing down. I worry about his unaffected leg when he stands. It seems to almost bow a little bit. I will bring it up with his ortho when we go back the next time.
Big changes are in store for us. We are planning to move close to Huntington, WV. His dad and I have decided to live together again, although we are not together. Confusing, I know. We're working on being friends and good parents and then seeing if anything romantic develops. So far, so good. We will be close to family, yet still close enough to Cincinnati Childrens for certain services.
Spencer is getting his cleft palate and hypospdias repaired soon. We are waiting for a phone call from scheduling. These will be surgeries 6 and 7. We have also decided to repair his ptosis, which seems to be getting worse as he gets older. It will be done in two parts, the first will take place sometime this year and the second when he is 7.
We are in the process of switching Spencer to a blenderized diet. He has been having a lot of volume issues so this way we can give him more calories in a smaller volume. I'm pretty excited about it. No more Pediasure and his reflux has been soooo much better.
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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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