bxrgrl- you are a gift!
Thank you Bxrgrl for being so passionate about helping those with GBS. When our daughter Kenna had GBS she was only 4 1/2 (in 2005). The PT, OT, and speech therapy staff was outstanding. The first thing (and perhaps the most important in my mind) is they kept Kenna positive. Like you were saying, they helped her realize what she CAN do and not what she CAN’T do. They respected her (and us) but pushed her just a bit further each day. She was paralyzed from the neck down and in a lot of pain. Today, she is walking, running, playing and at least 75% back to health. Thank you for what you are doing, it makes a difference!
One thing that was very good for Kenna was working her core. She used the exercise ball and reverse sit ups to really get that core strong. Also, she had ‘brushing’ sessions where they would take a very soft brush, start at her feet and go in a circle toward her heart all the way up her body. This was about 2 months into it when she didn’t have so much pain to the touch. That seemed to make a difference in her energy and her pain level.
Author of “Joy in the Morning”