Welcome to Adventures in PKU!
Definition of PKU: Phenylketonuria is an inherited disorder that increases the levels of a substance called phenylalanine in the blood. Phenylalanine is a building block of proteins (an amino acid) that is obtained through the diet. It is found in all proteins and in some artificial sweeteners. If PKU is not treated, phenylalanine can build up to harmful levels in the body, causing intellectual disability and other serious health problems.
My name is Sky and as you probably know by the title, my son Ezra has been diagnosed a week after being born with Phenylketonuria, also known as, PKU. My partner Dustin and I were really lost when we found out this news. We had never even heard of PKU! I had a million thoughts going through my mind when they told me…
Am I a bad mother for not knowing or researching every little thing that my newborn could have, including PKU? How are we going to maintain Ezra’s diet when we as ourselves don’t even eat healthy at times? What’s he going to do when a kid trades him some of his lunch in school when he isn’t supposed to have it? What do you mean I’m going to have to stick his heel with a needle for blood work? I’m a bad cook and now I’m going to have to cook all these veggies?! I mean you get the point. I was a wreck.
But, the truth is, EVERYTHING IS FINE. EVERYTHING HAPPENS FOR A REASON.
We have had such a great support system from the very beginning. Children’s Hospital has worked with us step by step. I can text his dietician any time and I will get a quick response which has been a lifesaver! Our families have stood by us, helped and educated themselves about the PKU diet. It is so important to have a good support system for this kind of diagnosis and we are so thankful for every little bit we receive.
The main point of creating this blog was not only to look back on Ezra’s journey through life, but also so some parents that receive the same news we did can come here for some relief in knowing that everything will be fine.
I hope you enjoy this blog as much as I love creating it!