WELCOME TO NATHAN'S BLOG!
Thank you for keeping up-to-date with Nathan. We hope you visit often and enjoy experiencing our son's journey as much as we do. Please feel free to leave comments.
We love hearing from everyone!!!!
Thursday, October 30, 2008
Wednesday, October 29, 2008
First, let me give you a little background - most persons who have had to deal with the medical community regarding Ds have commented on how out of touch the doctors are and how out dated information about Ds is.
What the bill basically does (among other provisions) is authorize the dissemination of up-to-date and accurate information "on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes" when a women receives a positive prenatal or postnatal diagnosis for Ds of their child.
When this bill passed the Ds advocates stood up and cheered- rightly so. The press releases were flying and victory was being claimed.
As most of you know, I've worked in government my entire career and policy is one of my specialties (and why I love my job). So, I decided to actually read the bill to see just what the language said. As I suspected, there is NO requirement to do anything. Period.
The policy specifically says that the agencies "may authorize and oversee certain activities"...including"`(v) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions, to patients..."
Don't you just love government? In policy, one word can make all the difference - that word in this bill is "may." The bill doesn't say that the agency "must" or that the agency "is directed to" - it simply says it "may" do what the Congress has legislated.
Does this mean that it won't happen? No. Does this make the bill any less important? Not at all. This measure is a very important step forward for those persons who's lives are touch by Ds and those yet to come.
What it can mean is that those same organizations that worked so hard to see this policy come to fruition may need to take their battle into those agencies "authorized" to carry it out and make sure it gets done.
Tuesday, October 28, 2008
Here's what I mean - I've heard that most people with Down syndrome live at home. Will Nathan live at home his entire life?
ANSWER - Maybe. Most persons with Ds do live at home with their parents but many also live independently. I'm sure by the time Nathan becomes an adult the trend will shift toward greater independent living arrangements.
But, let me ask you this - are you a parent? Then, your child may just live at home their entire life too. I'm sure we all know typical adults that still live at home - I personally know several. My sister jokes that my niece is going to have it so good at home she'll never want to leave! Point is - Nathan will be no different than any other adult. If he chooses to live with us for his entire life we would be thrilled. I'd actually prefer it. But, that's his decision when the time is right. Until that day, Danny and I will prepare as if Nathan will be with us.
Do you have any questions? Send me an email.
Monday, October 27, 2008
On Saturday, Nathan spent the day with his dad and Grammy (mommy was working out of town). On Sunday, we attended my cousin John and Michelle's sons Baby Dedication ceremony - where we pleasantly found out there will be another new addition to the family!!!
Sunday, October 26, 2008
My hypothesis is two-fold -- the historically inaccurate and undeserving stigma attached to those with Down syndrome and our insatiable appetite for perfection in every aspect of our lives is to blame. Abortion is just the means to an end.
My husband and I chose not to have the prenatal amniocentesis, a procedure used to accurately detect chromosomal abnormalities and gender. We accepted our child from the moment of conception. But, are other women who make a different choice discriminating against the disabled or just exercising their right to choose? That's for you to decide. Regardless of the answer, the latest research is promising and has the potential to change the face of Down syndrome.
A team of Harvard University scientists have created a new technique that generates “pluripotent cells” - the procedure utilizes stem cells from the skin and bone marrow and turns them into stem cells (pluripotent cells until now were only found in embryos) in an attempt to reprogram the cells to act like embryonic cells, which will allow doctors to find new treatments and slow the progression of the 10 incurable medical conditions including Down syndrome.
The scientists aren’t claiming that creation of these cells is to genetically correct them and then reintroduce them to the body but they’re also not denying that one day that’s where the research is heading. Mick Bhatia of the McMaster Stem Cell and Cancer Research Institute in Hamilton, Ontario said, “the beauty would be that you’re taking the persons own cell, so if you correct it at a genetic level, by putting it back in, those cells won’t be rejected.”
As a mother of a son with Ds – I’m looking forward to the potential this research and others happening around the world will bring. But, that’s another post - for another day.
In so many ways, the struggles with Down syndrome are like other medical battles – fought with an outward smile and an inner strength many can’t comprehend. There is also an inner turmoil that silently drives you to learn everything. For me, it’s an unrelenting pursuit of knowledge that knows no boundaries when it comes to my son.
Tomorrow -- The Kennedy/Brownback bill - the turning point for Down syndrome and the medical community.