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Phase 1b begins....

This is a good thing...Phase 1b has officially begun. Instead of having to force Cade to eat he shows interest and eats like a "normal" baby should. This really just started yesterday...I was holding him and he saw is bottle sitting on the TV tray...He started throwing a fit for it. He was fussing and throwing himself back. When I picked up the bottle to feed him, he started chuckling. I could not believe it! It was like a switch was flipped...Such a difference! If you don't know, there are phases to PWS. Cade has been in the failure to thrive phase, which is called 1a. I had posted a while back on what the different phases were in detail (I think). I will post more on that later. This is basically the normal baby phase and he will stay here for a while. The next phase is where the obesity can set in, but not the food seeking. Just meaning that they still eat normally, but everything has to be monitored closely because they start metabolizing foods different, which can lead to the obesity. Then, the final phase is the hyperphagia...where the food seeking can start due to them always being hungry. Hoping we don't hit that phase for a loonngg time...and IF and WHEN Cade does I hope we are that much closer to a cure! Aside from that, Cade has been doing just great! He babbles like crazy and is the happiest baby ever....

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