90 degree ankle support/positioning

7/26/11 Monday
It is lovely to see Jewel in her gait trainer, moving forward and stepping towards things she wants to play with!  Last friday at the Shriner's outreach clinic they look Jewels AFOs, her fiberglass molded shoes, to add extra padding and re-do the velcro closures.  These molded shells keep her feet and ankles in a 90 degree angle.  We have been committed since this Easter to keeping the AFOs on her all day long, with small breakes.  Jewel rose to the occasion and has understood the reasoning behind this.  Because she is very smart and understands what we are saying, we can remind her why she needs to keep these shoes on, even though they are very uncomfortable.  We put her running shoes on over the AFOs for assisted walking and in her wheel chair and in the gait trainer.  Her AFOs go on with out running shoe in the stander and this helps her ankles get the proper support and keep proper positioning  and the ankles will not collapse.  The goal is to have the ankles, knee bent and the hips bent at 90 degrees while in the wheel chair for optimal positioning.  We have found this to break Jewel's high tone and spasticity down a lot.  Well since the AFOs have been gone, she can not go in the stander, she is walking on tippy toes in her gait trainer, and her tone has increased a lot.  With her high tone stretching and exercising has become very difficult and she has some un-functional repetitive reflexes kicking in.  When she is in her wheel chair now she keeps banging her left elbow into the arm rest, now it is raw and almost infected.  Even though we have but towels on the chair, her brain keeps firing the wrong message, she keeps saying sorry and repeating the elbow banging.  It has been so challenging and I have been stressed because I do not want her to get an infection especially a systemic one!  So we have been keeping an eye on it.  I have kept sock on her feet and long pants on to avoid any other skin break downs due to her increased tone and spasticity.  Last night I cut the toe off a sock and pulled the sock up her arm to go over the elbow owie.  It worked rather nicely, like an arm warmer, then I put the medicine on the owie and covered it back up because Jewel does not like band aids or tape on her skin and it will trigger the same negative firing of her muscles.  This got me thinking how grateful I am for Shriners Children's hospital.  I am grateful for their care for Jewel and all the help and the AFOs and hip adductor brace that they gave her.  I thought about all the children who do not have access and care from Shriners and it made me sad.  We are very blessed and fortunate for their care and I am so grateful for their help.  I know Jewel's AFOs will be in the mail any day now and we will go back to better body positioning and life will get easier, but until then we will watch and monitor her elbow. Who knew that by putting the ankle in a 90 degree support could change her tone and quality of life for the better!