Parenting PKU

Where to even start... Since July we have been challenging Luke's daily phe intake to reach the maximum his body is able to process, and when we hit that number we were going to trial him on the medication Kuvan. We have had the medication since the start of August and the dietitians had said it would likely take a week or two to find Luke's max... Well fast forward to the end of last week and we are still  not there yet! In July, Luke was in-taking around 17 grams of protein a day (860mg of phe) which was an amount we had become accustomed to, it meant he had a bit of freedom when it came to having gluten-free breads or muffins instead of PKU specific ones, it meant a Kinder Surprise egg every now and then wasn't out of the question, but we still were working with much less protein then a child on a normal diet. When we initially started Luke on solid foods (all the way back in 2015) he was on an intake of 7 grams of protein a day (350mg of phe), so we already felt lik

I am going to admit it took a lot of writing, re-writing and then re-writing again to put into words all that I wanted to say in this post. It is a hard one in a lot of ways for me but I do find it very cathartic to write this all out. I admit that I struggle daily with Luke's PKU.  Okay, you maybe thinking that it is normal and fine for me to struggle with it, and if you think that then you would be right... Logically I know this... I know that a life long medical diagnosis is going to have a life long struggles. However to me it is hard to admit that after 3.5 years I still have much to learn and yes, I do have daily struggles. I like to be the strong one, the problem solver, and when it comes to Luke's PKU I want to be completely in the know and honestly I prefer to be completely in control... well no one told my sons body that (or him for that matter!) The struggles  Will he eat a big meal, a small meal, or will he straight up skip this meal? Keeping Luke's p

It has been quite a while since I posted a blog post, I didn't realize it had been since November, and I have some exciting things to catch the blog up on. As always thanks for reading and caring for our sweet little boy!! Wait... what about school? As Luke is edging closer to kindergarten age and time seems to be flying by we realized we had to make some choices about preschool. Preschool was something (pre-PKU) we had just assumed our child would attend. The question was how comfortable were we with the idea of our three-year-old, well almost four-year-old, attending a playschool where the kids have snack together... cue the fears and general feelings of discomfort.  Some playschools in our area do a rotating snack week where families take turns bringing group snack for everyone for the week and some playschools had each child bring their own snack each day to eat at the table all together. Well for Luke the obvious choice would be the sending a snack each day for him to e