Spencer is doing really well with his G-tube. He has spit up a little, but it's expected at first. It's an interesting but completely gross piece of medical equipment. He can push the milk back out of it if he passes gas or is crying, which when you think about it is kind of gross. If you aren't careful, when you open up his spout(?) his last meal can also leak out a bit. It's a lot easier to use than the ng tube, but requires more care which we are learning.
We are waiting for his follow up sleep study, and hopefully if that goes well, we will know if he gets to come home or not. If he does badly, he could be in there a lot longer.
We managed to get into the hospital's social security workshop. Applying for social security sucks. I don't think I would be able to do it without being able to attach his medical records. I guess we'll see if he gets it. We are also applying for financial assistance through the state and the hospital. He'll be able to at least get institutionalized medicare for anything after hospital stay day 31, which will cover his surgery.
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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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