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Toughest Kid Around

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 medication that is available to PKU patients that has been proven to increase the tolerance of people who respond to it. The down side is that the company that created it has the patent for another 5ish years and in order to recoup their R&D money loss they have had to set the price at an unreachable level - approx. $100,000 a year per person. 
Dr. S mentioned the drug trial for Luke and said that the reason it is on hold is that we simply do not have a drug plan that would cover this cost. Which is a crappy feeling, knowing there is a medication out there that could be LIFE CHANGING for him, but it is financially impossible. 
Today Dr. S informed us that in some cases the drug company is paying for people to be on the medication... say what?!? The reason they are doing this is because the provincial government in Alberta here is in talks with the drug company to cover the medication for PKU patients. 

I am not 100% sure when we will hear back about if/when this will happen but fingers crossed!

Why is Luke the toughest kid around?
This little man was so well behaved throughout the 2 hour appointment and then on top of that he went to the lab and had 7 vials of blood drawn - did not even cry! So brave.

 Thank you for taking the time to read this update comments and questions are always welcome<3

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