Parenting PKU

Doh! Well I know it was bound to happen at one point or another!  I calculated Luke's phe on the fly and got it a touch wrong, darn it! Saturday when I tallied up his final numbers in the evening I realized I had gone about 20 mg of phe over his limit.  At first I was super upset and mad at myself but I calmed down and told myself that it's done & I cannot change it now. Really with his low levels last week this should not make a difference. It is less then 4% more then his usual amount, so it is not like I doubled it. Well I did the heel poke this morning and tomorrow first thing I will take it into the Lab. I will be very curious (and slightly anxiously) awaiting these results!

Lucas having some applesauce with my cousin Amanda in BC   One of my worries when we thought about solids was that the "easy" feeding methods would not be something we would be able to use, things like food pouches and self feeding foods like rusks and puffs. Well that proved an unfounded fear as pouches that are only one type of fruit or a mix of low-protein veggies and fruit are ones I can pretty easily estimate the amount of phe. The puffs and rice rusks are low in protein, especially considering how little they weigh, which is wonderful because they make great distractions when trying to cook a hungry little guy some food. Back Left to Right : Bread mix for a bread machine, case of phenyl-free formula, Mushroom Burger Mix Front Left to Right: Amino-acid supplements, Lo-Pro Anellini, Lo-pro Rice So now that Lucas is ready to start having "more solid" type foods I ordered up what I consider the next step in his diet. One of the things I wanted t...

Well today I placed an order for what seems to me is the "next stage" of foods for Lucas. I have been putting off moving Luke to more firm and diverse solid foods until I ordered him up some of the low-pro options that will a big part of his everyday diet. Things like making him bread and putting the "peanut" butter on it, it won't be real peanut butter because 3 tablespoons of creamy peanut butter has his entire days worth of phe!! (crazy right?!?) So how do I order up this food? I go to a special website and it provides me with all their options of mixes, baking needs, soup bases, pastas, rice, cereal, cookies and more. I select what items I need to order (including his formula) and it provides me with a grand total. So far we have been able to order up all free items. These are items that are paid for by the government and I have had a couple people ask me why would it be covered? Well Lucas' food is a medical food  due to the fact that the protein has ...