Parenting PKU

It feels so good to say that we have had safe zone phe levels for one week now!!  I got a wonderful call on Monday about Lucas' phe levels being 133 as of Thursday the 22nd and it was so wonderful to hear the dietitian even express how happy she was that we seemed to have hit the diet plan on the right mark. Even better was the call I got yesterday saying that Luke's phe level had gone from 133 to 221!!!  We are so happy to have Luke in the safe range of phe levels and he is gaining weight so well! This is a very happy place for us to be and we did not make any diet changes this week! So all in all I think it is very safe to say we are excited for this and look forward to hopefully being able to keep his levels in this range for awhile.  Luke was happy to hear his phe levels where so great <3

We started a new diet plan on Friday the 16th that was a big deal, it was a big step. We went up to a very high amount of breast milk, high enough that since that Saturday he had only had phenyl-free formula fortified breast milk leading up to the Tuesday following that diet change. We had been adding the phe-free formula to every bottle of breast milk so that Luke gets the extra calories he needs to catch back up on his weight growth.  Well as of Monday the 19th he weighed in at....  9lbs 6oz!!!   *Cue Mommy doing a happy dance in the hospital and praising her big baby* The dietitian was pleased with this weight increase and we just needed to wait to see what his levels are from his Sunday heel poke following that change. The Sunday heel poke would reflect 3 days at the high level of breast milk and when we got those results we would have a good guess as to how high his levels had gone and make a new adjustment. It seems like a great thing that we went all breast milk

Let me start by saying that, as much as I like to talk and talk openly about anything and everything now, I used to struggle to voice my opinions and questions to medical professionals. I am not sure why, maybe in my earlier years I used to think they are the ones who went to school forever so they must know everything about what I need them to know about. Well I do believe many doctors have a well rounded education, I also now know that we need to voice concerns and it is okay to ask the doctor to explain themselves and/or explain how I am feeling about what is going on.  Well I have been struggling with trusting Luke's metabolic team since before Christmas but had kept pretty quiet about it, thinking that they are the experts and they will let us know what needs to be done.  Since Christmas Eve Luke's phe levels have been well below the "safe" range which is not immediately dangerous but it also not ideal for helping him grow. These low phe levels are caused by Lu