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Hard to talk about

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 phe balanced means trying to spread his daily phe allowance out nice & evenly over the whole day, not to load him too much at any point in the day.... yeah right! The boy will sit down at one meal and devour an adult portion... and then the next time (with the same food) he will eat a bite and declare himself stuffed. 
  • Will his next blood level come back low again? We are anxiously waiting to start Luke on his Kuvan drug trial (I will talk about this more in a bit) and therefore need to see his body's phe potential maxed out. What does that mean? It means we keep upping how much natural protein he intakes in a day and then do frequent blood spots/tests to make sure we haven't pushed him too far. We thought this would be a week or so of raising and testing but we just entered week 5 of trying to reach his maximum and still keep seeing super low blood phe levels.
  • Do we have anything on the go or coming up that I will have to pack or plan extra food around? This one is constant. If we plan to go somewhere and he gets hungry will there be a good option for him that fits in the daily phe plan? Or will he be too distracted to eat and therefore I need to boost his phe up before & after? What food will the other kids be eating and do I have a way to give Luke the same?
  • When is the next blood spot? How do we get it into the U of A hospital that same day? How soon will we get the results and how soon will be have to do another test? We have been BLESSED with amazing dayhome families who understand that sometimes Luke's PKU might mean an unusual "field trip" in the form of a trip into the U of A hospital to drop off a blood spot. We are also blessed beyond belief to have a strong network of people who take a good chunk of time out of their day to help me when I cannot make it in. But honestly it feels like a pretty constant thought in the back of my mind trying to plan out the next steps and juggle all the pieces to be in our favor.
  • Am I doing it right? This is probably the hardest one. I have been calculating and tracking Luke's phe for 3 solid years now, I should be an old hand at it. There is however a bit of a constant nagging in my mind wondering if I remembered to enter everything he ate already, trying to remember what we have coming up that may throw his eating off track, and the constant worry that he will not eat and then I have to get "creative" to get the last of his daily phe into him.
In the end I know what matters is that Luke's PKU remains well managed, and he knows he is loved so much. He is a vibrant, healthy and sweet boy who loves to meet new people, go on adventures, run & play, and to him his PKU is just a small part of his life.  

Kuvan trial

This is something that requires a detailed post of its own and I have one in the works so stay tuned. However just to give you a hint of what to expect: we have been working very closely with Luke's metabolic team to get him enrolled in a trial of the medication Kuvan and the drug has arrived! We are eagerly awaiting his growth spurt to be done so that we can max his levels/tolerance out and give the drug a solid shot!!! So stay tuned...

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