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Houston, We Have Liftoff!

From Kate:

The benefits of a stander are as follows:

  • Increases bone density
  • Improves digestion
  • Psychologically beneficial
  • Builds endurance
  • Gives a person a better chance of exploring the world.

So here we are in January and, without going into too much detail, Getty is finally able to use her stander. We are absolutely beside ourselves with happiness. Getty thinks it is cool, too. 🙂

Some of the roadblocks we met along the way that slowed, halted, and snail-paced this opportunity for Getty were:

  • Doctors not convinced SMA Type 1 kids could tolerate being upright.
  • Insurance denying the payment of the stander.
  • Waiting for Getty to be referred to and accepted by Shriner’s as a patient to recieve much needed TLSO (chest brace) and AFO’s (ankle braces) needed to safely use the stander.
  • Getty getting approved for Medi-cal.
  • Waiting to get Getty accepted into California Children’s Services (CCS) to be evaluated and to start the process of getting a stander.

In my imaginary world, all children with SMA are given all the needed supplies, machines, and equipment to assist to live a quality life.

What I am learning is that not all states, counties, and cities are the same with resources.  Some things we have received without any resistance is a full fight for another family. The opposite is true, too.  There is no rhyme or reason why some SMA families have to fight for X but not Y, and others must fight for Y but not X, and still others have to fight for both.

All of these roadblocks took months and months to unwind. Then in October, as Getty’s low bone density continued  to be a known problem, we just said, “Screw it! We are buying Getty a stander.” The paperwork, bureaucracy, and resources that fell just short from helping us acquire a stander for Getty left us so frustrated and exhausted.

Luckily, I was able to find a family that was selling their stander. I drove the four hours, there and back, bringing home a very special package for Miss Getty.  The Prime Engineering, Super Stander is now a permanent fixture in our home.

Purchasing the stander was just the first piece of the puzzle. Once we got the appropriate braces, we needed to figure out what incline degree Getty would tolerate. The process is very slow. Thanks to many SMA families, we were able to gain a wealth of knowledge regarding tolerance and pace.

As a mother, it was killing me to know that I couldn’t get Getty in the stander earlier. It is like knowing that there is a piece of equipment that has the potential to increase her well-being and health, and I felt like I had failed her. The resources around us were not willing to purchase it, or they were telling us that she would never tolerate it, or I was handed another form to fill out with no assurance of approval.

I am happy to report that Getty has been using her stander for the past month. Every day she spends about an hour and a half in it at about a 50 degree angle. She is also tolerating this incline without the need for bipap support, which really is encouraging.

At some point, our goal for Getty is to help her tolerate being completely 90 degrees upright. Slow and steady.

Princess Getty I presume.

Hanging out watching Little Mermaid. Ironically, to hold her arms in, we use an ACE bandage which resembles  … RED TAPE.

Knee braces & AFOs in stander and in pink tights. 🙂

A few nights ago, Getty and I chased Mark around the house. It was so much fun to push her around the house in her stander as we played tag with Daddy. She giggled as we got close enough to tag him and then we swung around as fast as we could to run away. It was a wonderful time and an everlasting memory.