The weekend went by without any problems. Nothing useful really happens over the weekends. Patricia stayed with Eli last night and called me this morning. She said Eli was handling his feeding really well and he was digesting all the milk they were giving him. I laughed and asked how she knew Eli was "digesting" all his food. She told me the nurse attaches a syringe to the end of Eli's feeding tube and basically sucks up any undigested food for measurement. This whole practice is pretty disgusting if you ask me. She then proceeded to tell me they put anything he hasn't digested back...
Eli's feeds are going well and he is starting to hold his body temperature now. His weight is up to about 8.5 lbs. or so. I think our lowest point was around 8.0 lbs. when we were admitted last Tuesday. It's hard to believe we've been in the hospital almost a week now. Our parent badges expire tomorrow so I'm going to have to look into getting a new one.
Later that afternoon we got a little dose of reality. One of the genetics doctors stopped by to visit with Patricia. He thinks it's probably Prader Willi given Eli's symptoms but we should know in a week or so when the test comes back. It was so nice of him to share his opinion being the expert that he is. Thanks for giving us something to dwell on for the next week. Remember when I mentioned something about good doctors being able to instill a sense of hope in you? It goes to reason that bad doctors are really good at taking the hope away. Consider our hope gone.
We are praying that Eli's Prader Willi test comes back negative and if it doesn't turn out that way they we are praying that God will give us the strength to deal with this disease and all it will mean for our family.
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