Parenting PKU

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

Obviously we are very open about Luke's PKU and we do this in the hopes that this will make it natural for Luke to hear about his condition. To me a very important thing is that he knows he does not need to hide it, ever. We have talked about high phe/low phe foods since we found out about his PKU and especially since Luke started eating solid food.  It is something that was encouraged by his metabolic team and it really made sense to us. Plus with  me running a day home and other children around, I hoped they too would understand the importance of being careful with food. Well it seems that this method was very effective as our smart little three year old knows to ask if the food is high phe (red light) or low phe (green light), and also he knows many of the foods that are very high. Some of the things he says are: "Oh no, that is high phe and will hurt my brain" "Is this my PKU cheese or high phe cheese?" "Is this a red light Mommy?" &quo

Anger & Frustration Well the good news I posted about here  was that we were thrilled to find out that Luke's food was now going to be fully covered by Alberta Health Services. I placed a large-ish order of new foods for Luke but held myself back from "going crazy" with the order. Turns out this was a mistake.  The foods that were listed were never meant to be free... meaning there never was a change in coverage. I am not 100% sure on the details as to how this mistake happened, it sounds like an error with the metabolic food distributor.  They have not sent an invoice for the cost of the foods I ordered, and honestly I cannot imagine how they could. However foods that are very pricey are ones that Lucas loves, including the animal pasta that we tried for the first time from the free order.  I have known of this for a awhile now, as the website was corrected not long after I received our order. I struggled to find a way to post about this in a way that did not

Good News #1 The first bit of good news came via a phone call from Lucas' dietitians this week letting me know that we had the green light to starting challenging his tolerance again. I say "again" because awhile back we challenged it and eventually reached an intake high enough to balance his blood phe numbers and his tyrosine levels. Luke has been in the safe zone phe level-wise, it is just his tyrosine numbers seem to stay low and tends to drop off easily. They, the dietitians, say the low tyrosine levels leads them to think we are not fully utilizing his natural protein intake, meaning if we give him a higher tolerance then his enzyme activity should keep his phe numbers safe but also show us an increase in his tyrosine levels because his body will now be making more by breaking down the phe.  So long story short  we are pushing his tolerance which means higher amounts of natural protein (phe). Now it is not like we are adding meat or cheese or anything like t

Today was such a busy but great day for the three of us. Luke, Jeff and I headed to the Stollery at 9am to meet with his metabolic team.  The appointment  The dietitians always start things off with weighing and measuring Luke to see how well he is growing and if you have been following the blog you may know Luke has kinda been a bit light on the scale. However today we were happy to find out he is doing really well both height and weight wise! He is in the 50th percentile for both!! Then we talked about his diet some, touched on his formula intake and got the green light to try him with a new juice type formula (which will be good for summer holidays) Then in came Dr. S, she is his pediatrician/metabolic doctor. I love this lady! She is great at offering guidance and suggestions that will make things easier for us as he gets older, things like having him help us make his formula, help us weigh and measure his foods, those sorts of things. The exciting news Kuvan  is a