Wednesday, February 25, 2015

Education is an economic program, not a social program

Education is the foundation of solid economic policy. It is not a social program, though it is treated as one in the United States. Countries that emphasize creating a skilled workforce have a more agile, better performing economy. Kansas is on track to gut our entire education program. These policies threaten our state for generations to come.

Yesterday's vote to defund Parents as Teachers is yet another example of Kansas's short sighted devaulation of education.  The Parents as Teachers program provides invaluable community outreach helping to ensure the academic success of at risk populations. The program is a vital part of the safety net that ensures a strong foundation for our future generations.  Infant and Toddler Services and the Early Childhood Special Education programs help mitigate long term costs of providing a Free and Appropriate Public Education.  
An overall value on education with an innovative and appropriately funded public education program will ensure a robust, versatile and flexible workforce that will do more to lure businesses to our state than any tax incentive we can offer.  

Our Governer and respected Representatives need to reconsider their education policies in light of all the studies that show funding education pays an overall net gain in our economic future. Kansas is on a dangerous path of income inequality and injustice.

NICU Graduate - Baby Girl's Gone Wireless!

Baby Girl had her second NICU follow up today and she looks great!  Everything from head shape to weight gain is fantastic.  She seems like a typical 7 week baby, which is amazing considering where we started.  She's beautiful and so much fun to cuddle.

Mama is a bit nervous to be going wireless, we'll be using a Snuza monitor for the forseeable future.  We're working on adding more tummy time now that we are wire free.  Baby Girl gets OT through Infant and Toddler Services - a wonderful and very awesome organization (they are a 501(c)3, I think you can donate to them if you'd like).  We also receive support and help with early childhood development from Parents as Teachers.  Or at least, we do for now. Apparently, the committe that manages Parents As Teachers budget has decided to defund it, ending the program.  This would be a huge loss for families across Kansas.

We're so grateful for everything the St. Luke's NICU has done for us.  The doctors, nurses and support staff are top notch.  An amazing group of people who work tirelessly to care for a very vulnerable group.  We're so thankful we were in the right place at the right time.  We know our story could have gone very differently.

Baby Girl was 22 weeks old on the 22nd of this month.  She's a NICU Graduate!

Tuesday, February 10, 2015

CHD Awareness Day #4, Realization

It took me a long time to realize that C4 was never going to be cured.  No matter how skilled the surgeon, there was never going to be a point wher ethe doctor would say "Ok, your heart is good now, you no longer need a cardiologist".  C4's heart will always be broken.  With skilled repairs and careful manipulation of what the surgeon had to work with, we've achieved "good enough for now".

When you tell people you're going to have a baby with a congenital heart defect, almost universally, they tell a story about their friend who had a heart baby who had open heart surgery as an infant and "they are totally fine now".  For some defects, that may be true, but regardless, that heart now has scar tissue and modifications that will forever change how it operates.  That heart can never be normal, it must be managed.

People think that congenital heart disease is something that can be fixed and then you move on, but it isn't.  It is a life long affliction with lasting conseuences.

Some days, I barely think about Charlie's heart.  Some days, I don't imagine when the next surgery will come.  Most nights, I check on him, to make sure he's still breathing.  Most nights, I realize, this is a journey that will never end.