I'm not sure there will ever be a day that goes by that I don't think about PKU. Even though it crosses my mind every day, I usually suppress my fears and worries about PKU and what it can mean for our tiny Avery. But today was like a reality slap in the face.
We changed pediatricians and we met our new doctor today. He's so much better than the last one. But even still, he knows very little about PKU. After a few minutes of explaining what we know about it, he told us he learned more about PKU from us in 5 minutes than he ever learned in medical school. This would worry me, but it seems to be pretty typical in the medical field. People just don't know much about it. He was really understanding and interested and we all just agreed to leave the diet management to Avery's team of dietitians and geneticists and he'd pretty much stay out of it.
On the way home, we had to stop to fill a prescription for Avery. A 15 minute prescription filling turned into over an hour because the pharmacists had to investigate whether or not the prescription contained an artificial sweetener that contains phenylalanine, which Avery wouldn't be able to have.
And then I came home, checked my email, and read a new study about how even people on current diet management for PKU can suffer brain abnormalities.
What. The. Heck.
I want to take a PKU vacation.
Go somewhere far away where no one has heard of it and I can forget it exists.
Oh wait, no one has heard of it.
But it's impossible to forget.
Even though there's a lot of studies and research going on about PKU, it still seems to be a medical mystery in some ways. The unknowns are what scare me. The current treatment is relatively new and who really knows what works? It's sometimes so hard to trust that we're doing the right things to protect Avery.
You see, it's more than "just a special diet."
It's the weighing of each gram of food.
It's making a huge batch of formula every morning.
It's making sure she eats what she's supposed to in 24 hours.
It's keeping a record of everything she eats and when.
It's the weekly blood samples we have to send in.
It's ordering medical formula every month.
It's worrying about the cost of medical formula and low protein foods.
It's the weekly phone calls with the dietitians.
It's the regular visits with the geneticist.
It's fixing dinner at night and realizing she couldn't eat it.
It's the worrying each week that her levels are where they should be.
It's the fear about the future.
It's sometimes so very much overwhelming.
As a parent, I just want to protect her from everything bad, hurtful, and uncomfortable out there. I know it's impossible, but it still seems so unfair that she's been dealt this disadvantage in life.
It's embarrassing for me to admit that the only thing that usually makes me feel better is to imagine how it could be worse. There are people who have lost children, or who can't have children, or whose children are suffering from painful conditions. I'm sure if they read my story and my whining laments, they would roll their eyes and think to themselves "Oh she thinks she's got it bad!" But then again, I've done the same thing to others.... in my head, of course.
I try to look on the bright side, and there is a lot of brightness there. The future is scary, sometimes numbingly terrifying, but for right now, on Avery's 6 month birthday, she's healthy. She's doing all the things babies at 6 months can do and whenever she does something "advanced" I feel a bit of relief. Not that she's better than other babies or something, but because I think that she is still smart and her little baby brain is still healthy.
But you know what else makes me feel better?