Friday, February 24, 2017

CC4C and lots of Lake Travis Love

One of the most unusual things about our family and our life is our opportunity to meet extraordinary people in our community.  The love and goodness of the individuals in our community has flooded our family and overwhelmed us.
Anytime there is a valentine's party for my little ones, that means I get to be busy making them for those that have a hard time cutting and coloring.  Hayden is considered tetraplegic, so thank goodness for the digital age.  The one above was the best I could do this year.  It had many technical difficulties and  for someone who used to do yearbooks for schools for years, this was not the product I was hoping for but settled due to time.  Little did I know, that the few hours I put into making the valentines would be reciprocated 10 fold.  
CC4C paid a visit to Hayden and delivered by the an amazing amount of goodies to his class with his champion buddy, CB Hudson.  The ladies seem to nudge CB out of the way.
This kid loves his class, teachers and school.  I give complete credit to the educators that make his classroom inclusion.  This picture is worth a thousand words on why it works.  Education, self esteem, service, community and most of all love.
Below is the result of reading and going through valentines for 3 hours and hanging them to celebrate all the way through the next few weeks including Hayden's 8th birthday.  The kids had a blast but mom did most of the work;).  I just couldn't begin to hang the entire basket of little valentines the kids got, so they made it on the stander on the right.

We had a great valentines day.  Hayden upgraded his box this year to be in line with all his life or urology and GI battles but not quite yet appropriate 2nd grade potty humor.
Be sure to read the french with the french accent.
Garrett's 1st Valentine box.

Flowers from my sweet Valentine!
My cutest little sunday school Sunbeam, Garret,t and his buddy for life Charlie.  Aren't they the cutest!
Garrett started making these at our family respite vacation camp John Marc near Dallas.
My pretty Valentine, Hanna.
The only time she will let me do heart hair.

Thank you Pi Beta Phi at UT, The Lake Travis Swim Team, the Lake Travis Athletic Department thanks to coach Hank Carter, Lake Travis Pals, Lake Travis Football Team & Lakeway Elementary.

Tuesday, January 24, 2017

Texas Medicaid to Managed Care

Please as you read this post try not to associate the label of a political party with the intent of my comments.  I'm doing my best to explain what it is that we are living daily. I open up to share my story because so few people understand what is at stake. What is at stake for our family is of the highest level.  It is not insurance deductibles, it is not costs of premiums; it is insurance processes being consistent and transparent that keeps us out of the hospital and at home and out of institutions. Our story is not one of a political football to be tossed around for others political gain.

Today, I prayed for all of the many people in attendance at the HHSC Star Kids meeting.  There are leaders over state health care who are doing their best working out the many issues associated with the dissolution of the Texas managed Medicaid model to the new privatization model.  I prayed that their hearts and minds would be inspired to listen to the issues that would touch their hearts and their humanity.

There were many issues noted as I listened in on the meeting. Ultimately, those issues that are systematic, in an unproven system, have trickled down to many children that are medically fragile and their families are paying the drastic consequences where the intended "continuity of care" has sorely missed the mark. We have been bearing the burden of process failures while painfully earning and trying to hold tight to services, medications, doctors and special equipment for daily living.  I learned in business about accounting projections, forecasts, risk & feasibility analysis and quality control.  HHSC has a committee that advises the state about all of these things, and following our testimony and all of the analysis, the committee suggested a delay of 12 months yet it was not listened to by the law makers that appoint the committee and roll out took place this past October.

It has been an overwhelming process transitioning to the new managed care model.  I have spent several days crying due to feeling overwhelmed at the snowball of denials.  I have been forced to try and learn the role of detective to identify the root of the systematic issues. It has kept me up for many nights.  You may have seen me parked and crying in the pharmacies parking lot for not being able to get prescriptions refilled or crying on my phone for an MRI, or waiting for over a year for a wheelchair and mobility aides.  Let's just say there has been a lot of crying in parking lots.

Starting off the new year we had our annual Spina Bifida clinic meeting with over a dozen medical professionals meeting in our room giving an oral quiz for a long 6 hour day.  Prior to this day, we are ordered to get routine images done for this complex clinic for review (MRI, renal bladder ultrasound and a whole spine X-ray).  The stress of having to get images done on a child that is medically complex is enough to be overwhelmed about.  Add to it trying to manage scheduling the appointments all together in one day and making sure that it is approved minutes before the procedure that requires fasting for you child all day.  This beat me down but I kept getting back up and made it through.  This new battle feels as though our freedom is being stripped away to effectively care for Hayden at home and our time and energy is consumed in processes. It has threatened us to seek treatment in the ER, just the place that the new system is trying to keep us out of.  Trust me, we want to stay as far away from the ER as much as possible.

New legislation is required this session if we have any hope of fixing the many issues that were brought up today in the meeting by the providers. My work is not done and I am glad I do not have to stand alone. I am fortunate to live in Austin to have the convenience of making the day trip to speak to the politicians. Many families travel from all over the state at their own personal expense of time and sacrifice to attend these meetings. We are families of vulnerable children of all races, socioeconomic backgrounds, and religions. We are a grassroots group of mothers and fathers of fragile children who have to rise up and speak out.  #txlege

More is coming. We continue to need your help to let the legislators know that this is more of a priority than dollars and cents.  Next Tuesday, I will be back at a hearing with Senator Nelson, the author of this mess.  If you are interested in knowing when and where you can support fragile Texas kids, let me know and I will be sure to let you know the dates to follow.

I don't want to be involved in politics. I didn't get a law degree.  I didn't want to be a doctor or nurse, I didn't get a degree in medicine.  I paid to study subjects of interest such as art, mass communication and business for my career.  Yet here I am more studied in medicine than I ever imagined.  This education was from a fire hose and the cost has been high.  I am only now beginning to learn about politics and how the law is used as a game of strategy and that justice isn't guaranteed but I believe this battle is worth fighting for.

Niemöller is perhaps best remembered for the quotation: 

First they came for the Socialists, and I did not speak out—

Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out— 
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out— 
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

Saturday, October 31, 2015

Halloween milestone

As many of you may know, this last week has been an extremely difficult week for Hayden and our family. While every minute was focused on getting Hayden well in the hospital, he missed out on a lot of fun Halloween events at school and in his community.  One of the most important things he didn't want to miss was Halloween. Halloween and Christmas are probably the two most important holidays celebrated by our kids.

We are grateful to those of you who are always looking out for us. This year we were fortunately referred to two nonprofit charities and to be the lucky beneficiaries of their good works. One is Walkin' & Rollin' Costumes.  The other is Flying Vikings. Hayden's costume wish was custom designed and built free of charge from a kickstarter  nonprofit out of Kansas. This was my first year not to spend weeks designing it on my own.  He loves airplanes. He is Dusty Crophopper and Garrett is his best friend El Chupacabra.

Below are pictures of the big unveiling of the costume.  It was designed to be shipped and assembled easily.  He couldn't wait.  We were glad to have family around to see the big exciting news.

 We told every nurse and every doctor in the hospital how important it was for Hayden to be healed so that he could wear his costume and attend the Flying Vikings event. We are happy and relieved that Hayden healed and for the stay of rain so that we could get up and enjoy the most magical morning with the Flying Vikings.
I made this one manic day in the hospital room with doctors and nurses in and out.  I told them I am not forgetting my other children.  I made this out of foam, felt, staples, glue, a bowl and lots of duct tape.  I needed it to be light, sturdy and to stay up with suspenders.  Unfortunately for a 2 year old, he still thought it was "too heavy."
I swish my cape at you, you have been shamed.
Who is the plane who breaks wind – and it STAYS broken? It is I, EL CHUPACABRA
 We took the family photos before we possibly got rained out or we all fell apart.
One of my favorite quotes from the movie:
El Chupacabra: Are you tired? You have been flying through my mind nonstop! 
Rochelle: And why would I be tired from flying through such a teeny-tiny space, hmm?

 El Chupacabra, Dusty Cropphopper, Princess Sophia & Top Gun (the original/oldie planes movie).
The car show that zoomed up and greeted us as we were the first to arrive at the event!
 This was Hayden's favorite orange car.
 Crafts to do while we waited for the skies to clear.  Thank you God for giving us this morning!
 Our wonderful pilot PT and his plane.
This was Hayden's favorite UT hookem' orange car with the owner being a philanthropic UT student.  This isn't what my college transportation looked like:)

 McLaren 650S Spider.
Garrett thought this should be his car since it matched him.
This wasn't a paint job, it was a custom wrap for the kids just for the show.

Getting ready for his first flight he was very concerned and focused.
He actually flew most of the time we were in the air.  He held it very steady and loved every minute!
Going over Georgetown lake.
He held steady for the landing.
While he didn't fly this plane he did love it's orange stripes.
Hanna was off to her crafting event and had no time for pictures.
   She didn't event want to drive in the race cars.
It isn't everyday that you see a car seat in a Ferrari.  The nicest owner, Stuart, gave Hayden an Italian Lira as a prize.
Yes Scott spotted Ikea:)
Whew, naps this afternoon and then off to trick or treating!

Today we made happy memories. Thank you to oh so many who made today possible.

While Hayden has not yet learned how to walk, today he learned how to fly.