Tuesday, May 24, 2011

What I Have Been Doing?

Oh! I forgot to tell y'all what else I have been up to.
When I last blogged in December, I told you that I had been appointed to the Texas Newborn Screening Advisory Committee. I was very honored to elected to be the first ever Chairman of the Committee, for a 2 year term. I am working hard to make sure that the committee is successful and has a positive impact on the newborn screening program in Texas. Unfortunately, the committee and Cystic Fibrosis testing are the only parts of "Greyson Law" that have begun, and CF testing would have happened anyway.
With the start of the current legislative secession, I have found myself pulled back into the efforts of protecting the Texas Newborn Screening Program from attacks from special interest groups. I will be honest, I was hesitant to get involved again. The establishment of "Greyson's Law" was very emotionally taxing on our family, and I wasn't sure that I wanted to open us up to that again.
I couldn't ignore the danger.
The anti-government swing that has been building in the country is alive and strong in Texas. I worry that one of the casualties of this trend will be the newborn screening program. Most of the state, and yes, the nation, don't have newborn screening on their radar. They don't know about it and never give it a second thought. Unfortunately, the very nature of the program is it's biggest flaw. Protecting babies from rare, recessive disorders doen't get the attention that premature births get. I am amazed that most of the parents in the Lamaze classes that I have taught, have no idea of what newborn screening even is.
Seth is a glowing example of of how the program works at it's best. The Infants that test normal in their newborn screens, their parents never even realize that they have been tested and therefore protected from the effects of rare inheritable, preventable disorders. Many times, only those parents that do get a call from the state that their child has had an abnormal level in the screen even realize that the screening has happened. This is weakness that the civil rights group that sued the program are exploiting. The fact that most people don't know what the screening is and what it is for. They claim that the screening program and the research that is done on the bloodspots to develop new tests and treatments is government invading Texas citizens privacy. They are taking this weakness and exploiting it to paint the most conspiratory picture about the program to goad people into a position against the program and its good works. It is very telling that none of the "parents" that are the "plaintiffs" in the past and current lawsuits have children that are in anyway affected by any inheritable disorders.
No parent that understands the good done by the screening would ever be a part of these attacks.
Which exposes the other weakness of the program, the parents that do have children that have been saved by the program are often like Nicole and I after Seth was identified, relieved and overwhelmed in grasping how they have had a child affected by a recessive disorder. They are often so preoccupied in learning how to manage their child's special treatments, diet, or lifestyle modifications that they have little or no time to even realize that newborn screening in Texas is under attack or that it still needs so much work to even be as good as the rest of the country.
There are children in Texas that are still being injured or dying from preventable disorders!
I hope in future blogs to help educate you and in turn you can help educate others about the importance of newborn screening. I have been spending much of my days-off up in Austin during this Legislative secession, doing my best to defeat bills that are dangerous to the program and help protect the way that newborn screening is done in Texas.
I will be posting new blogs as we go and updating you on this fight. I will also update you about developments with the Grey's Gift Foundation. so stay tuned.

Sunday, May 22, 2011

Time to Start Again....

It has been a while.

It amazes me how time just keeps marching on.

Grey has been gone for 2 years, 5 months, 1 week and 3 days.

I will admit, that I have spent a lot of time despairing over the fact that we should have a 3 year-old running around, underfoot, into everything. Still, that time is less than last year. But I think about Grey everyday. Nicole and I are trying to honor his memory in several ways.

In fact, Nicole is the reason that I am going to start blogging again. I stopped because I just really felt that I was stuck, and that blogging was part of what was keeping me from refocusing my energies.

I have succeeded in doing that. Together, Nicole, the boys and I have started a new chapter in our lives, and Grey is still with us. Seth and Riley just finished their Little League season. Seth was on the Padres in the Minors and I must say, he has really started to get it. He was amazing! He really improved this season. He played catcher, 2nd base and out-field and did a really great job at every position. In one of his games he hit 2 singles and a double! He even got a in-field Home-run that drove in two other runners and tied the game. Then he was playing catcher in the last inning of that same game and got the last out at the home plate in a double-play. Defiantly his best season yet!

Riley was on the Pee Wee Tigers this season and I was the Head coach. We had great fun! Riley plays a great 2nd base and even played some catcher. He got more hits than any other boy on his team this season. I really didn't know what to expect, and I was very nervous. I have coached the younger kids, but this was the first season that we were in a competitive league, we were keeping score. My boys went on a 4 game winning streak and lead our division for the first 3 weeks of the season. We finished in 5 th place with 5 wins, 1 tie and 3 losses. I was very proud. And more importantly, the kids had fun.

Luke is growing up very quickly. He just turned 16 and has really taken to the Air Force Junior ROTC program at Canyon High School. I must say that if he manages to live, he is becoming a fine young man.

And what, you may ask, have I been doing besides coaching Little League and working? With Nicole's help and support, I have been developing a plan to help save babies in Greyson's memory. First, we started teaching a few classes at the McKenna group in New Braunfels to parents of young children. They aren't truly the exact fit that I was planning, but they need to hear of a story like Grey's, to realize that they have a responsibility to be advocates for their children and how precious their children's' health is. What started as a few minutes at the beginning of a class, has become a whole class to ourselves to tell our story and share Greyson with others. With the success that we had, I felt that we should expand and started targeting first-time parents, having their first baby. I have been teaching a monthly class at the New Braunfels Christus Santa Rose Hospital as part of the "Caring for Mom/Caring for Baby" portion of their Lamaze program. With the wonderful pamphlet that Nicole has designed and the Website that she built, we are reaching people who have the greatest need of knowing about the newborn screening program and more importantly where to go for expanded screening to protect their newborns.
Nicole and I soon realized, because the feedback from the classes and the lack of newborn screening education for parents, that we could and should do more. After much thought and discussion, we have decided to found the Grey's Gift Memorial Foundation.

Using Seth and Greyson's story, we will provide the education to parents, so that they can learn from our experiences.