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Good news times two

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 that, it simply means I don't need to worry when he wants a couple extra ritz crackers or if he wants a couple more goldfish... as long as it fits in his day... does that make sense? 

 Good News #2

 WARNING I AM VERY EXCITED ABOUT WHAT YOU ARE ABOUT TO READ!

 I order Lucas' specialty foods from a medical foods supplier located in Quebec, I place my order through their website and they ship it out. Now I am sure I have mentioned before the insanely high price of these foods and how the basic necessities (formula, bread, pasta and some basic meat replacements) are covered and therefore come at no cost to us. However a vast majority of the rest of the items come at a high cost to us. Pancake mix for $35, that kind of thing.

 On Sunday I went onto the website to place a small restock order after our summer holidays and I saw a glitch, everything was listed as $0.00.

 I am sure you can guess where this is going...

 I did not believe that this could be anything other then a website error and sent the company an email asking them to address the problem. When I heard nothing by Thurday I put an inquiry on the PKU Edmonton Facebook group asking if anyone knew what was going on. Turns out someone else had noticed this as well and had reached out to them via phone.... and wait for it.... IT WASN'T A GLITCH OR MISTAKE!!!

 We have FULL food coverage, all of it. Every last thing available on the website is covered by Alberta Health Services. 
Cue the happiest tears I have cried in recent memory.

 I know I am not alone, that the other Alberta PKU families also felt this overwhelming excitement, joy and just a huge weight being lifted. 

 I look forward to showing you all the delightful new foods Luke will now have the chance to try!!

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