Thursday, November 23, 2017

Gratitude #GivingTuesday

#GivingTuesday If you are looking to make a contribution to charity this year, I am simply putting an alphabetical list together for you to pass along.

Some of these charities were in our life for a brief moment, while others remain a huge part of our lives.  Some also receive funding from federal and other large sources, while others are grass roots start ups.  Each serves a very specific purpose and none of these charities overlap in the purpose they serve.

I encourage you to learn about each of these great organizations for yourself and pass along this list of resources to any family/child that might be looking for a connection in our community:
Athletes Helping Athletes- National
Austin Miracle League
Camp John Marc- Texas
Cheyanna’s Champions 4 Children (CC4C)- Austin
Dell Children’s Medical Center- Miracle Network
Disabiliy Rights Texas
Lake Travis Lions Club
Life Rolls On- National
Little Lobbiests- National
Make A Wish Central & South Texas
Morgan’s Wonderland- San Antonio
Protect TX Fragile Kids (PTFK)
Red Arena- Austin
Ronald McDonald House Charities Central Texas
Shriners Hospital- National
Special Olympics Texas
Spina Bifida Association- National
Spina Bifida Texas
Texas Parent to Parent
The Lion League- Texas

Recently, I read commentary about how many cents of each dollar donation actually goes to charity and not administrative profits.  The commentary was disheartening.  It can be discouraging when you think that the money that you give isn't being put to good use.  These charities put your donations to good use.

We have been extremely blessed the past eight years by many charities that do mighty good works.  Due to Hayden's many surgeries and diagnosis, we have had the opportunity to meet some of the best human beings our society has to offer.  We will have a lifetime of indebtedness and gratitude for the goodness that has been shared with us.

On this day of Thanksgiving, we are very thankful.  Today we celebrated a two year anniversary from graduating from our 7 weeks at feeding therapy in Baltimore at John's Hopkins's Childrens' hospital, Kennedy Kreiger.  We all had dinner together and felt true joy that can only be understood by someone that has worked on feeding issues for 8 years.  Happy Thanksgiving to you all!

Monday, July 3, 2017

MSNBC Medicaid Florida Francis Rooney Texas Scott Adrienne Trigg by Rich...

Wednesday, April 26, 2017

We were honored once again by CC4C by doing a video of a day in the life of Hayden.  This was our Thursday with OT, PT, medical supplies and a state football ring ceremony.

The video was masterfully done by relifefilms and the most beautifully touching witnesses of our family and how CC4C has blessed us.  Thank you to all who have played a part in it.  My testimony of CC4C is that they have been the most resourceful group we have ever been supported by as a whole family.  

CC4C has taken on the role of acting as community social workers made up of superstars, rock stars, gold medal athletes and state champions.  Collectively they have helped us network to avenues we didn't know existed to help us find help outside of what we had researched ourselves.  

They taught us new resources for technology help, and rare medical studies that are tough to find and apply for without help of navigation and education to help us find help ourselves.  Their cause vocally gives credit that it was called of God to formation.  These individuals are magnified in their incredible talents to bless our lives and so many others.  If you would like to financially support them, they would love your help.  If you know of a family struggling for a diagnosis, have them apply.  It has been more than we ever expected.

To learn more about Champions for Children see the links below:

CC4C has a mission statement.  From us, I would say, mission accomplished!

This season, CC4C focused on 10 children, pairing them up with a CC4C alumnus/alumna champion child, a champion teammate, and a high school team who, together, create a team of inspiration and support as they race toward their recovery finish line.  

You can read their bios here:

The champion programs at CC4C form the primary mode of inspiration that the foundation utilizes to carry out its mission. 
The Teammates team up with each child and run a race in their honor, giving them the medal they receive at the annual Medal Giving Ceremony.  CB Hudson is Hayden's rockstar teammate.
The High School Teams welcome the children into their programs with open arms, giving them opportunities that they never imagined having due to their conditions.  Hayden's team has been Lake Travis Football.

Wednesday, March 29, 2017

5 months into Texas Managed Care Organizations from Medicaid

Testimony over Senate Bill 1922 "step therapy" for prescriptions

Testifying has been exhausting and emotionally personal.  The kids will hopefully learn from this experience how to advocate for themselves and people of all abilities.  Hanna and Hayden will get to be House pages next week for Representative Workman.  We are also very grateful to Senator Watson for the opportunity to be Senate pages this last March 8th.

They have the professional pictures coming soon for the Senate Media.
Testimony to Senator Nelson Finance

Testimony to Senate Committee about MCO Roll out problems

Testimony to HHSC prior to MCO roll out from Medicaid

New legislation is required this session if we have any hope of fixing the many issues that have been placed upon fragile families due to the transition of Medicaid run by the state department to being managed by for profit managed care organizations.. 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 Protect TX Fragile Kids

Things to know:

  • Managed Care Organizations/Insurance Companies receive tens of billions of state dollars in their contracts
  • Managed Care Organizations/Insurance Companies are for profit and get to keep their identified "cost savings" that happens to be tax payer money
  • Texas wants the federal medicaid block grants so they can "manage" the Medicaid $ giving it to the MCOs.
  • MCOs have their own prescription formularies and they want to control what medicines are approved and save cost by making patients fail generic drugs prior to allowing name brands
  • MCOs do not want to pay for many of the standard of care images and tests that doctors require for high needs patients
  • MCOs do not reimburse pay for therapies, equipment and supplies at the disclosed Medicaid rate and force many companies out of business

There are an awful lot of ways to defraud a multi-billion dollar program and that is why so many companies are turning up to offer to put their hand in the pot.

The next few weeks are vital to our family as we try and have influence over responsible careful legislation before the end in May.  The laws that are passed will be in effect for the next couple of years and directly effect our family on a daily basis.  Since most legislators at the capital hear from representatives of insurance companies, doctors, hospitals and pharmaceutical professionals, it is important for them to hear how policy effects families and individuals.  It has been a crash course to learn how to navigate politics and the capital.  If you would like to see the link to the Bills that I am following, click below: Medicaid Bills

Please know I always welcome company at the capital for any type of support.

Sunday, March 19, 2017

Spring Break 2017 Charleston

 This year marks our second annual spring break road trip to Charleston, South Carolina.  Four days of driving with five days of vacation.
 With all our stops we added a lovely 2-3 hours each day.  I hate packing and loading the kids for the trip, but once we are going, it is fun to have all the kids locked and loaded full of movies and high quality gas station snacks.

It was surprising just how beautiful Alabama's rolling hills and spring flowers are.  The entire trip is beautiful should you ever make the trip.  Leaving 80 degree weather to go to the beach that never got out of the 50s was a shock.  Good thing we brought our winter clothes to the beach.

This was our first venture with the free wheel attachment for the wheelchair.  It worked great on the hard sand but not so great on soft sand.  I guess we put too much pressure on it and it would bend the footplate.  I figure, beach wheelchairs with fat tires are still the best if you can rent them at your beach.  Since it wasn't available at most beaches, this gives us some option as it lifts the front casters if you look closely.  
Low tide at Kiawa island with lots of jelly fish and buried treasure (like Scott's wedding ring that he lost and I found)
Hanna racing to pick up sand dollars and shells
The beautiful Ravenel bridge connecting Charleston to Mt. Pleasant
Plenty of things to do even in the cold in Charleston.  The kids loved the aquarium.
Hanna loved touching the star fish.
Garrett loved the lego exhibits the most.
Mom always knows how to make new friends
This time Hayden wasn't so sure he wanted to be brave.  Garrett sure did.
So we had never seen a turtle sit like this in the sun?
The plantations are amazing to visit in Charleston.  They are sacred places and have been preserved and beautified.  The kids learned a lot about slavery, Black, English, French and Native American history. 
It took us touring the plantation and the zoo all day before were finally made it to the "pirate ship" that the kids had been looking forward to.
Garrett became obsessed with the canons and how they protected the plantation and the forts in the area.
Hanna and I became obsessed with the flowers and selfies with them.
The gardens at the plantations are amazing.
It was raining outside and the ship really isn't wheelchair accessible so we sand karaoke from the car as loud as we could, Highway to the Danger Zone!
Another trip to a national park and seeing a lighthouse on Sullivan's Island.
We have a lifetime America the Beautiful Pass  pass for the disabled and we plan on going to see as many national parks as possible.  They are better prices than any amusement park for sure.
The rain and lack of accessibility wouldn't stop us.  Scott carried Hayden all the way to the top of the lookout.
The underground Fort Moultrie
Not exactly what I expected to see from a national park, but this fort was very kid friendly and I am so glad we went to see where the early pioneers battled (actually Fort Sumter is where the Civil War began but it is only accessible by boat and it was just too cold)
Gaga and Hanna made cookies and hot chocolate since it was a cold spring break.
It was a great Sunday at church with Gaga taking a day of "rest".