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!
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.
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.
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.
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!
...I am Ana Alesia, and I've showed up in this world in a sunny day of September 2006. I do not understand yet much about this world, and for now I only know that I have people around me that loves me so much. Their happiness should not be shadowed by anything, however there is a big and bad cloud in the sky right now that doesn't let their (and mine) happiness to be complete...The cloud is the Spinal Muscular Atrophy diagnostic that was put on me. This is a death sentence for me, I am locked in a body that is dying...and the doctors said that it will die before I reach the second birthday. I am now fighting to defeat the disease and I need all the help in the world for this. Please think about me, pray for me: I WANT TO LIVE!!!
8 comments:
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.
http://health-beauty.shop.ebay.com/items/Medical-Mobility-Disability__stander?_catref=1&_fln=1&_sacat=11778&_trksid=p3286.c0.m282
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.
Wow, you are so creative! It's wonderful to hear her speak. I think you have a great idea.
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!
Your welcome I am glad I could help a little. If there is anything I can do from the US please let me know.
Karen
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,
Jeanna
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
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