Friday, August 24, 2012

A little less sucky

I always hate PKU but this week it has sucked a little bit less.
If we're facebook friends, you've maybe already seen a couple reasons why but don't go away because I've got a couple more.

  • The State of Utah has selected an essential health benefit plan that will include coverage for medical foods in the new insurance exchange that will start in 2014!!! This means we can still get coverage for Avery's expensive medical formula! 
  • Last week's PKU fundraiser at the Utah Natural History Museum raised more than $6000 for the Intermountain PKU and Allied Disorders Association!
  • I found out our insurance company not only covers 80% of Avery's medical formula, but they will also cover low protein FOODS!  We'll now be able to get things like low protein breads, cheese, pastas, etc. for much less than the retail price which makes them about the same as buying regular foods.
  • It's not just that she can't have a lot of protein, she has to have the exact miligrams every day.  So on days when she doesn't eat enough, I have to add a little cow's milk to her bottle at night so she gets the exact amount for each day.  Well yesterday she ate all her protein without needing milk at the end of the day!  I was so happy I nearly cried.  Getting her to eat has been a HUGE battle lately so this was definitely a win.


Kate [City Girl Mountain View] said...

YAY for a good PKU news post! Night at the museum looked fun, I hope they start doing events like that here. And woohoo for Avery eating all her phes!!!

Kim said...

Such great news! I'm so excited for you!