A tale of FREE health care

At the ripe old age of 1, Tyler was admitted to a national Cerebral Palsy clinic where we were able to get physical therapy, Occupational therapy and speech all to work with him above and beyond what he received with Early Intervention. We saw the CP docs, orthopedics, developmental pediatrician and lots of interns and we were put on a very low key treatment plan. ( which at the time was all we needed). But a good one none the less. At a VERY affordable price.... FREE!

We moved to Arizona. Low and behold this program had an outreach clinic and we were set up with some amazing Dr's and nurses that would travel down and see HUNDREDS of patients in a short amount of time. ( I will have to explain Arizona's way of insurance/CRS and other "forms" of therapy on another post. YES, we did get long term care, YES we did walk away from it to move to Utah because we felt that is where we were suppose to be and yes... We miss it horribly.. ARIZONA, not just the insurance!)

When it came to time to get a little more aggressive we needed to come back to Utah for the surgeons and rehab docs. This trip was planned well and amazingly PAID in FULL and we were able to fly to Utah and spend some time with our family before the trip ended. We also got so MUCH information to chew on. At the time we opted to go with the less aggressive form and try botox. It didn't work and the more aggressive form was the way to go.

Moving back to Utah we get in much more regularly. We see a PT, OT, Speech, orthopedic doc, orthotitcs, developmental ped ( which I am not sure I like a lot) and of course Dr. Gooch. We have a whole team that met us every three to six months depending where we are in our treatment. We see our therapists sometimes several times a week.

How much does this cost us? How much do our co pays come to and the 80/20 portion? What about when we reach our max 12 a year? ( yes insurance only gives you 12 appointments a year!)Do we get limited speech appointments?

The big answer is NO we don't. It is FREE!!!!!!

We get what is best for the child. What is best for Tyler is to keep going. To keep being rehabilitated. To keep pushing for what is BEST for him, regardless of the cost!

So how does this Marvelous plan work?

Perfectly~

It works perfectly because Tyler is a Shriner's Kid.

Shriner's hospital is a non profit organization that is run by donations and by the Shriner's religious organization. You must have a qualifying condition in order to be accepted as a Shriner's kid. You can easily fill out an application and see if you qualify. Any orthopedic or neurological conditions that affect movement and some have burn centers qualify you for this care. They also do research in several of the hospitals.

There are 22 hospitals across the Country. Children from other countries are also given chances to come to Shriner's FOR FREE to get the care they need as long as the condition is treatable.

The care that we get at Shriner's is UNBELIEVABLE. Any time you are there for a procedure there is a care kit on your bed. It includes a stuffed animal ( generally from build a bear or Kohls kids care) a blanket and the toiletries you will need for your stay. There are less patients per nurse so the care is amazing!

Sadly, in 2009 when the economy went down the tubes, so did the endowment for the Shriner's hospital. In order to keep ALL the hospitals running they did something they never thought they would have to do. They had to start charging. However, they aren't charging the patients but charging the insurance companies while waiving the co pays and any remaining balance to the children and their family. Any service that the insurance company would or could deny coverage the hospital will still do The head of Shriners said," We will always take care of children the best we can."

Recently, Utah's Shriner's hospital had to start taking the insurance from the patients. They are working to become preferred providers since the only other "competition" is PCMC and to get contracts with those they need to work with. ( which is funny because EVERY doctor that works at the Shriner's works at PCMC and we have seen them in their individual office at PCMC for full price) They are working to get the portion that the insurance would pay in order to help offset the costs of care.

I am writing this for informational purposes and also to see if there is anyone out there that would like to experience the Shriner's for yourself and would like to attend a therapy session there. We would LOVE to be able to do a service project to provide something to the wonderful people who work there that provide this care for free. Or, if you feel the need to want to donate to them please do so in Tyler's name. He would MUCH appreciate it. Because of their hard work he might even get a big boy bike next summer!

If you are interested in a tour, a time to see them in action or just to feel of the spirit of compassion in a hospital PLEASE go see the Shriner's.

As a mom of a Shriner's kid, I cannot thank them enough for the love, support and encouragement we get from them along with the support of knowing that they have everything there that will help Tyler.

Please if you can donate, even a dollar or a stuff animal or something. A little goes a LONG way!

The Purpose of our trip - Tuesday

I have so many emotions about our trip to Shriner's hospital. I have so many thoughts about Shriner's in general. I can't always find the words to describe it just yet. I will do my best.

The whole purpose of out Trip to Utah was to take Tyler to Shriner's hospital. The appointment was to get a consult and possible procedure to help his legs and muscles. The purpose was and is to improve his quality of life and to make him walk.

Rewind to December 23rd:

After 9 months of waiting we got moved up to only having to wait six months and we were able to see and meet Dr. Kwasnica. We discussed botox and other options on how to make him move better and avoid more problems later on.

We told her about our consult for Phenyl and she agreed we should do it. We should get another opinion and that she was more than happy to work with Dr. Gooch at Shriner's.

As we prepared to go we went to the inter net and got as much information as we could. I have exhausted poor google search. I have exhausted my head, heart and knees. I have shared with Dallas, we have shared together and we have prayed SO hard to get the answer to what we need to do with and for Tyler.

The day of the appointment was anxiety filled for me. I had a horrible night the night before and was up till way past a decent hour to help me have a clear head. I was frustrated and tired and more anxious than I could describe.

We got to Shriner's and headed in to check in. Because we had to schedule the procedure from out of state we had to be admitted as a patient and be prepared to go into surgery for the procedure and then meet with the doc for a few minutes before.

Ty and I fell asleep waiting. All I could hear in my head was words that I was going to make the wrong choice and how grateful I was that Dallas was also there to help me. I was also so thankful for a Heavenly Father who I called on Heavily that day.

Dr. Gooch came in and we talked and she started looking at Ty's muscles and legs and feet. She made our decision easy. She was not convinced that at this time he needed Phenyl. She felt that botox was the right way to go right now. She was very impressed with Tyler. She felt that his deformed feet could possibly be fixed with the botox and bracing. She also said that he should be an independent walker. Because of his muscle tone now he may have a hard time walking long distances but he is doing VERY well.

We were then released as an impatient ( about an hour later) and we were headed to Grandma Brown's house.

In the hour of waiting and being released Dallas waited for the nurse and I experienced more of the wonderful spirit of Shriner's. We went to the play area of the hospital. 2 boys who had been patients for several years were there playing basketball. Ty was in heaven. He went over and the 2 boys were so cute with Tyler. They got him a ball and let him throw it at the basket. He would clap when they would make it. He would follow one of them around.

Ty played in the car there and on the motorcycle. He laughed and played.

I cried.

There is such a spirit there. There was a spirit of inclusion from the kids. A camaraderie from the parents and the idea of love from EVERY single person who donates to that place.

The amount of love that is poured into that building is immeasurable. The amount of love and dedication is more than I can imagine. The spirit of charity and care is inspiring and the children who are served there are the luckiest kids in the world.

I know that some day Tyler will have a easier time walking. That the medication and the treatments are no a cure but a way to help him have an easier life. This couldn't be done without Shriner's.

If you ever feel inclined to donate or to give to a good cause please think of Shriner's and their amazing care.

"The reason charity never fails and the reason charity is greater than even the most significant acts of goodness he cited is that charity, “the pure love of Christ” (), is not an act but a condition or state of being. Charity is something one becomes." Elder Dallin H Oaks

Because of their true Charity they have become something. I pray for them and thank them everyday of my life!

The upper floor where parents wait for thier cildren. And the children play as they are waiting for procedures etc.

Tyler playing on the girls motor bike but didn't mind it was pink.

Only car he will be driving for a long time if not EVER. He was having a blast scooting it aross the floor and honking the horn.

Ty happy as could be in the best places in the world. They can feel the spirit there.

Tyler Playing ball

Ty playing ball with the other boys.

How has prematurity touched you?

In 2005, there were 522,913 preterm births in the United States, representing 12.7% of live births.

1 in 8 babies are born prematurely each year.

In 2005, the very preterm birth rate among singletons (one baby) in the United States was 1.6%. ( very preterm is under 30 weeks)

Very premature babies who survive may suffer lifelong consequences, including cerebral palsy, blindness and other chronic conditions.

Eleven percent of newborns covered by employer health plans are born prematurely.

Direct health care costs to employers for a premature baby average $41,610 —15 times higher than the $2,830 for a healthy, full-term delivery.

Prematurity is something that has touched millions of lives. With 1 in 8 being born to early it is a cause that needs to be looked at. Tomorrow, million of Americans will be honoring those born to soon. Those with preemies will be asking you to sign the petition to go to congress to help those born early. Please consider this action. It will benefit so many.

Along with signing the petition please consider donating to a local charity to help others. Some charity like Ronald McDonald houses or Shriner's or even your local pediatric therapy location or foundation for blind children will help benefit those born to soon. Especially those who are still suffering the effect of their incredible journey of bravery.

How has prematurity touched your life?