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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.

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  • Bec says:

    Go Getty!!! Love you lots little…well not so little now…medium sized owl 🙂 xxx

  • Wiley says:

    She looks awesome in it! Go Getty!

  • Marcela says:

    Way to go Getty!!! Keep chasing daddy all around the house!!!
    I am just starting stander process over here, hope to have one soon 🙂

  • rooth says:

    Happy 2012 Getty, Kate and Mark! It’s so awesome to see Getty standing (!) and I look forward to reading more about her progress this year

  • cath young says:

    Your little one has captivated me, as has your mission in life with her.

    I have known about the benefits of a stander for a number of situations. If it is also beneficial for children like Getty, why is that has to be kept lying down all of the time during the day? Could she not have been given incline time before getting the stander?

    • gettyadmin says:

      Thank you for the comment and question. One thing that we learned early on is that all kids experience SMA differently. One thing that happens pretty early for type 1’s is the ability to swallow. I would have loved to put Getty in a stander a lot sooner, but what we needed to figure out first was a) to get a stander but b) most importantly needed to find a safe way for her to tolerate being upright. Getty needed to be able to manage her secretions that she couldn’t swallow anymore. That took along time for her to learn how to tell us in her own way that she needed to be suctioned. It also took her a while to figure out the she also had the ability to push some of them out. We had some pretty scary situations early on and the root of it was secretions management. So laying her flat was a safe solution.
      Tolerating being upright while you are losing muscle is a tricky situation. You need the proper braces on the chest, knees, and ankles. You need to find a comfortable position for the head to lay, since she has also lost head control. Type 1’s lose the ability to hold their head up and sit up on their own. For Getty, she was never able to achieve either milestone. Being upright is also very tiring for long periods of time as well. SMA experts recommend one to two hours of stander time a day to help with bone density. So the goal is to get to a place where she can safely stand, manage her secretions, and build tolerance. It is a long and complicated process and patience is the most important virtue. You can’t just put a type 1 into a stander fully upright and not expect some complications.
      In order to build tolerance before the stander, Getty spent a lot of time during waking hours on a 8′ wedge. That gave her the ability to be at a 40 degree incline safely and without the necessary braces. I think in retrospect that is why she is doing so well right now and fingers crossed will continue to tolerate a higher incline.
      Getty and a lot of SMA kids spend time laying down. It is safer, it helps them relax and rejuvenate. I hope this helps answer your question. We are so very fortunate. Some children with SMA might never have the ability to be in a stander or lay safely in an incline. We count our blessings everyday.

      • cath young says:

        Thank you for your explanation. I hope that Getty achieves maximum benefits and enjoyment from her stander. She and her family are doing so much to bring the issues of a little known condition to the forefront of people’s minds.

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