Thursday, September 6, 2012

PKU Clinic Day

Today was a PKU clinic day.
Right now we go to clinic about every 3 months.  At clinic we meet with Avery's genetic counselor and dietitian.  They look over her development, make sure she is healthy and progressing on track.  We go over her diet, meal routine (or lack thereof...) and talk about creative ways to get this kid to eat food.  We also talk about what's coming up next in her PKU treatment and helping her to gradually become more independent in taking care of her diet.

Let me first say this.  The doctors and nurses that we deal with are freaking amazing.  We normally meet at Primary Children's Medical Center in Salt Lake City but there is a local branch of the hospital that is closer to us that we can now go to.  I love everyone.  The nurse who took Avery's vitals was awesome.  She was so sweet and fun with Avery and during the usually somewhat traumatic experience of getting her blood pressure, she blew bubbles at Avery and totally distracted her from the blood pressure cuff.  Then she picked out a special toy for Avery to play with during her appointment.  I kind of wanted to cry at how kind and caring she was.  Good nurses make all the difference in the world.

We had a couple of interns sit in on our appointment today so it was like a crowd of people for Avery to entertain.  SHE NEVER STOPS MOVING!  This kid, I mean seriously.  When you meet her, you just know.  She is high energy to the max.  I am not even exaggerating.  She wants everyone to notice her and acknowledge her cuteness.  She wanted everyone to hold her and she wanted to grab everyone's ID badges.  She just might be a bit of an attention hog.  I think she probably inherited that trait from Kyle.  Just sayin'.

I won't bore you with all the details of the visit but I will share an exciting bit of news: we are starting a drug trial!  We've been waiting 6 months to finally start this thing and we're so excited to finally get it going.  The drug is called Kuvan and not all people with PKU respond to it, but if it works, it helps to lower blood PHE levels so a person with PKU can eat more natural protein.  It would just make life a little easier for Avery when she is older.  She would have more choices in the amount and variety of food she can have.  It doesn't mean she'd ever get a hamburger or whatever, but still.  It would be pretty awesome if it works.  She'll be on it for 4 weeks and if she responds to it, then we'll figure out how to pay for the OUTRAGEOUSLY expensive medication that hopefully insurance will cover most of.  

And that's the good news.
The bad news is, Avery had to end her appointment with the usual blood draw from the arm which is the most traumatic thing ever.  For her, and for us.  She screamed like crazy the whole time.  I felt so bad for the guy taking her blood but, like everyone else at the hospital, he was amazing.  He didn't seem rattled at all by the screaming, writhing toddler and he was still very fast.  Seriously.  I love them all.

1 comment:

vickyj said...

I am happy for the good news. I am also happy I don't have to be there for the blood draw. I am still cringing. :(