Grace for Rett » Grace's Life with Rett Syndrome

The newest technology in standing frames

For about 18 months now, Grace has had this very basic standing frame given to us by physio –> As you can see, we had to get pretty creative since she’s as floppy as a (insert clever simile here). We had to pad the front of her with towels and then we had to get the ortho team to make gaiters to put on her legs since she always found a way of bending her knees and just sort of hang there rather than actively stand.

So last month, we took Grace down to the physio office to meet the rep from Jenx who provided her with her bee chair and first standing frame. She was fitted for the Jenx Miltistander which we were told wasn’t given to famlies but used in schools for multiple children. We were also told that this was the most expensive frame there is and that it’s the newest thing no one has yet. Dunno how true that is or if they meant overall or just in this area? But being that Grace doesn’t put any weight on her own feet and can’t even straighten her knees, this stander was exactly what she needed. The benefits are:

  • Through hydraulics, the whole unit lays flat while she’s being strapped in and then you push a button and raise her to standing position.
  • There are dedicated knee straps which is perfect because that’s where we get the most difficulty – she bends her knees and then the standing frame isn’t doing its job. This does away with the extra steps of getting her into her gaiters before standing.

So our lovely physical therapist applied to see if Grace would be provided one for use in our home and she got it!

Here are some photos of Grace in her new standing frame

Melise - October 4, 2011 - 5:29 pm

Grace’s new frame looks fantastic! Although Caylin isn’t as floppy as Grace, we have the same problem with her bending her knees in the standard standing frame that she has. I’m not convinced physio will be up for getting us one though as I have enough of a fight with them about her getting hydrotherapy.

Hope Grace loves her new frame as much as it looks like she does though xx

Allie - October 6, 2011 - 3:50 am

Such a beautiful little girl and a wonderful gift to her to have the very newest and best stander. She is in my prayers way over here in California!

Melanie Kennelly - October 10, 2011 - 4:22 am

hi, we have a rett angel called Mikayla who will be 6 in dececember. I was wondering how is Grace’s circulation to her feet? Mikayla’s are often cold and blue and her feet are alot smaller than they should be for her age. She stands for a small time in a standing frame but will bend her knees when tired. Your website is great, we will follow your progress from over here in Perth, Australia. Grace is beautiful just like our Mikayla 🙂

admin - October 10, 2011 - 6:07 pm

Hi Melanie! She has quite small feet which grow very slowly. She’s been wearing the same shoes for about 18 months or more. But they’re never blue although they were when she was very little.

Jill - October 11, 2011 - 5:57 pm

Great news, and she looks delighted! Is that ‘Arthur’ she’s watching? Takes me back, my fans are adults now!
Well done to you, her family, for getting her the best, and a pat on the back for your lovely physio too!

Kelly Butler - October 26, 2011 - 9:38 pm

I LOVE this frame – Grace is so so beautiful, thank you for sharing her with us 🙂
Hugs,
Kelly

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