Tuesday, June 23, 2009

Position, position, position, compensate, limits, limited, limitations

Today, again about positioning....This is important because my muscles are soooo weak and I am forced to stay flat most of the time. This seems (and it is) painful, frustrating and there are a lot of complications coming from this limitation, just to mention some of them: joint contractures, intestinal transit issues, bone density issues, wrong perspective on the world when I am supposed to learn and experience so much about it...and the list can go on and on.

My parents are trying (limited by their knowledge (which is limited :) and not only) to compensate some of these complications. As I do not have a stander, and given the price for a stander I most likely never have one, my Jazz Easys stroller seems to be good for this purpose - with some limitations though:
  • The maximum elevation angle is 45 degree
  • Would be good to have proper trunk, hips support
  • Would be good to have a proper mechanism to keep the knees straight (or almost) and the feet in the right position
But, with all these limitations, I seem to like very much my new position, new perspective and my improvised positioning device and I could stand at 40-45 degrees without problems for more than 30 minutes. Tomorrow again, maybe a little longer and I hope this will improve my life.

Alesia - a new perspective

Alesia - a new perspective - the movie
You will probably notice that I know how to say my name (Ana). There is no trach that can stop me from talking!

Love y'all


Karen said...
This comment has been removed by the author.
Karen said...

I am not sure where you all live, but have you checked ebay for a stander? Your PT should be able to tell you which one would best suit your daughter. It's a shame these items cost so much.


Karen said...

ALso check out http://www.hiphelpers.com/ we used these with my niece. THey held her legs togehter, and we were able to support her upper body, while someone positioned her feet on the floor and helped her bear weight.

Anonymous said...

Wow, you are so creative! It's wonderful to hear her speak. I think you have a great idea.

Ana Alesia said...

Thank you Karen, following your suggestion we have searched on ebay germany (closest to us) and found some pretty interesting standers. Still not very cheap but at least 4 time cheaper than a new one... This bring more close the possibility to have one for Alesia.

Thanks for the hiphelpers tip!

Karen said...

Your welcome I am glad I could help a little. If there is anything I can do from the US please let me know.


Nina said...

She looks so good. It looks like/acts she is stronger. Have not heard from you in a long time. Looks like you are doing okay.
Many Hugs,

Kimberley said...

Daniel and Magda,

We do this with Kaitlyn as well. We also cannot afford a stander. It's amazing how creative you can be when you cannot afford the luxuries!! Hope Alesia is enjoying her new found perspective on life!

Hugs and kisses Kimberley and Kaitlyn