Mommy really needs to start bringing the camera to my therapy appointments so you have something to look at! So today was my first OT appointment for the first time since before my jaw distraction. Wendee had already got an update on how I was doing from Courtney (speech therapist) since they are in the same office. I was a little disappointed it wasn't Courtney I was seeing but Wendee is a bunch of fun too so I got over that quickly.
During my "off" time, Mommy had finally gotten me in to have an xray done of my shoulder that Wendee had previously requested. Although Wendee wasn't able to view the actual image today, she read the radiology report and it confirmed what we had all been thinking. My shoulder joint is not "normal". The radiology report indicated the joint did not have full movement (it was impeded by too little space in the joint) and it lacked plasticity. So basically what that means is that the range of motion I have now is essentially what I will always have no matter how much therapy I do. Although therapy will not buy me any more range of motion, it will help to build up my strength in other areas and keep me as flexible as possible so it is certainly not a waste of time.
After reviewing the report, Wendee asked Mommy about my goals. She said that one area that people keep being concerned about is my balance and how often I fall. Mommy doesn't think I actually fall much more often than other kids but I don't stop my falls well and end up with lots of scraped noses and goose eggs on my forehead. Mommy has heard many theories on why that is happening - my ankles are weak, the abnormal placement of my ear canals is affecting my balance, nerve endings in my feet aren't firing correctly due to having a syndrome, my arms aren't long enough to protect my face when I do fall, etc. So Wendee took all that information and set out to do a few tests to see if she could figure it out.
The first test was to put me on my tummy on a big exercise ball. She was behind me holding on to my waist and without telling me when - she would shoot me forward to see if I would put my arms out in front of me when I rolled forward to protect myself. I thought it was a ton of fun and initially almost rolled completely around before Wendee explained I was supposed to try to stop from rolling by putting out my hands. Once I got the hang of it, then I would do just as expected and put my hands out to stop me. However, Wendee quickly discovered that although my arms were out because they were so short my head was already going to hit before they would do any good. So theory four proved to be true to some extent.
The second test was to have me sit on the ball facing Wendee. Again she would hold on to my waist and then quickly roll the ball to one side or another to see at what point my arms would come out to the side to stop me. Time after time I would literally be ready to fall off the ball before my arms would come out. Wendee thought I was just playing around and trusting her to catch me but eventually she discovered that it wasn't that at all - I was putting my arms out but by the time my reaction would kick in I was too far gone and there would have been no hope to right myself before falling. Wendee concluded that most likely due to the abnormal location of my inner ear my balance was off. So theory two was proving to be true to some extent as well.
The third test was to have me walk and run with my shoes and socks off to see what my feet were doing. In the beginning I was dancing and skipping because I knew I was being watched. So Mommy tried to take my mind off what I was doing to see how I really walked by asking me to go pick a few things up for her and bring them back to her. Wendee was intrigued by what she saw and marched me down the hall to have a PT look at my gait as well. Sure enough, I was rolling (pronation) my ankles to the side at times when I walked - espescially on the left side. So there was some truth to theory one as well.
My family has already noticed that I fall more when I have thick soled shoes versus when I am barefoot - which is probably because I don't get the "feedback" from the soles of my feet the more there is between them and the ground. Although there isn't a good test for this it certainly lends some credence to theory three as well.
So let's see - four theories and most likely each theory is contributing to some extent to my balance issues. So now what?
Ankles - orthotics to help provide support to my ankles
Ear canals - nothing we can do about this
Nerve endings - thin soled shoes, however this creates a problem because even with thin soled shoes, most orthotics for the ankles also cover the bottom of the foot which would mean less feedback for the nerve endings. This could be challenging!
Short arms - since we can't make my arms longer the only thing we can work on is making the muscles in my arms stronger to try to compensate. Wendee suggested having me be a "wheelbarrow" (you know that wheelbarrow races you did as a kid) and "crab walking"
So after thinking through all this I think it is pretty spectacular that I am walking at all - let alone at 16 months which was considered within the "normal" range!
Peyton Nicole Smith