Update on Kaleo's legs

Kaleo has been a toe walker since pretty much he started walking at 1. For the next 3 years he persistently toe walked which caused many callouses on his feet. He had been seeing an orthopaedic doctor since we moved to NYC. He didn't do much for him other than to give him orthotics. He wore those for two years with no improvement. He continued to toe walk sometimes with the braces on. As he became more verbal he started complaining about pain in his legs. He would fall all the time. I kept telling the doctor about this but he just kept chalking it all up to his autism. It was as if he wouldn't take us seriously because of his autism.
A year ago I decided to take him to Shriners Hospital in Philadelphia. From the first visit, they listened to all our concerns. At that first visit the doctor decided to try casting for 5 weeks. Kaleo got to choose his cast color. He choose green for his favorite superhero Hulk.

So for 5 weeks he wore his casts and did pretty well with them. He was able to participate in all his school activities and walked pretty good with them.

after the 5 week we took him back to Shriners and they removed the casts. We were worried about how he would do with the sound of the saw. He laid down with his ipad and his headphones. He surprised us all by doing an amazing job. 

Although after having the casts on for 5 weeks in the warm spring weather...the smell once those casts came off was pretty bad! 

It's been about a year since the cast removal and I can not say that his toe walking has completely disappeared. However, he walks normally about 60% of the time and the rest he toe walks. That's a huge improvement from where he was. 

His leg pain and weakness continues, in fact its getting worse. The doctor's at Shriners felt it was muscular dystrophy. They feel its safe to rule that out based on his blood work. They do however feel it is a muscle disease. They have seen how his muscles are getting weaker. If he is sitting on the floor he is unable to stand up without holding on to something or having someone help him up. They feel his muscles will continue to weaken. We are scheduled for a wheelchair evaluation this week. So this pending diagnosis might be another to add to his list.