Arrgghh!!

My head hurts. I am sure that my blood pressure was way outta control today. I have a new respect for the whole political process, and see the beauty of this great country that we live in.

Today I found myself in a meeting with members of the Texas legislature's staff and representatives from the State Newborn screening and genetics program of the Texas State Lab, discussing the steps necessary to bring Texas up to the ACMG (American College of Medical Genetics) recommended standards for newborn screening. If we can do this, then when the NIH (National Institute of Health) makes its recommendations at the end of February, to add 5 diseases (including Krabbes) Texas will be in a position to enact those recommendations. House Bill 790, passed in the 2005 legislative secession, states that Texas wants to adhere to the ACMG recommendations. BUT! It was never enacted completely.

ARRGGGHHH!!!!

As I sat in the conference room listening to the State labs concerns and complaints about lack of funding, I felt this deep seated anger welling up in the back of my heart.

Is this really the way that we as the citizens of Texas, want to allow bureaucracy to decide something as important as our children safety and detection of heredity diseases?

As I sat there with my head swimming and my heart drowning in a seething rage, I had to hold on tight to myself to keep from shouting at the people to wake up! I tried to PATIENTLY remind them that this about BABIES! Not money! We as a State find money to stock our lakes with fish for God's Sake!

Still, I have to remind myself that we have to go thru this step too! For the fact that Grey has only been gone 1 month and 4 weeks, and we are already working to get legislation started is amazing! And still, it is not happening quickly enough!

Well, off to work I go. I need to cogitate on everything that happened today. Alot to process.

Alot to process.

We're starting Grey!

Ah Da! Loves you.