Tuesday, March 6, 2012

Painful Sometimes

I think for the most part, the day-to-day of having a child with PKU is becoming normal enough that I don't spend too much time obsessing about it.  But then some of the little things become difficult again, like the simple task of keeping a diet record, and the reality of how stupid I feel this disorder really is starts to set in again.  

I was "gently reprimanded" by the dietitians because we forgot to give Avery one of her food equivalents (a required allotment of natural protein) last week when we sent in her blood to be tested.  Her levels came back too low and I am the one to blame.  It kind of hurts.  Too much protein makes her levels high and is damaging. Too little protein makes her levels low and means she's not getting enough protein to grow, build muscle, etc.

We rely so much on the doctors and dietitians to coach us through every little step in Avery's life to make sure she is healthy.  But ultimately it comes down to us to feed her what she needs, keep track of it, and send in her blood to be tested.  Since Kyle works full time and I am home full time, I feel like the burden of that responsibility lands squarely on my shoulders.  Her levels too high?  My fault.  Her levels too low?  My fault again.  It's a lot of responsibility to carry and I sometimes don't feel qualified for the task.  Especially when I fail to give her all the food equivalents she needs and her levels come back too low.


Being a mom can sure be painful sometimes.

I recently watched a short documentary called "My PKU Life" and it made me cry, like a lot.
Even though I hate so much that this is a part of our lives now, I am so grateful we live in a time and a place where PKU can be diagnosed and treated from birth.  It's devastating to imagine what would have become of our sweet baby girl without the proper care and treatment she's received.  It's also a relief to know that she can grow up to do whatever she wants without being limited by PKU.

I also want to say that after watching this video, I'm really upset that the Department of Health and Human Services recently decided that medical formula and foods for inborn metabolic disorders were not an "essential benefit."  They've basically left it up for the states to decide whether or not to provide coverage for the extremely costly and absolutely necessary medical formula and foods.

How is it possible that we can live in a country that wants to make it mandatory to cover birth control and yet something life saving like this goes undefended?  It's unreal.  And it pisses me off.

With that, here's the video, "My PKU Life."  If you have 11 minutes to spare, please watch it.


Joami said...

It’s difficult because you have to be a mother and a caregiver. Some days with a child with disabilities can be overwhelming, but one day she will understand and appreciate your sacrifice. You will be her hero just as my mom is mine. The things my mom has to do and the pressure she has somedays is unfair especially since I’m an adult and should be able to do it myself. But I love her so much and am so grateful for her. You will be Avery’s hero, angel, and best friend as my mom is mine. This will give you a chance to have a relationship with your daughter that many other parents don’t get.

Kate [City Girl Mountain View] said...

Ahhh, PKU! {shaking fist in the air} Gotta love those "gentle reprimands." Hang in there! Avery is lucky to have you as a mom! Have you tried the Dietwell app for tracking her diet? I downloaded it today and despite a few hiccups at first, it helped calculate all of Olivia's phe for the day, I didn't have to do crazy math!