PKU sucks.

So after the suuuuper high PHE level of 10.6% a few weeks ago, Sammy had two weeks of suuuuper low levels at 0.5%. This past week after starting the rice cereal, it went up a little bit to 1.1%. They lowered his formula and he did great for three days. Then he became insatiable.  I had to page the dietician and consult with her. They’ve changed his prescription again! Increased the Phenex-1, left the Similac where it was and raised him to 4.5 Tbsp of cereal a day! Hopefully that does the trick.

I just totally realized that to the majority of you, this is complete gibberish.

I’m terrified to see what feeding him once he is ready to eat table food is going to be like.