The Latest with the Edwards

So as quickly as Grace started to walk on her heels, she stopped. Yes, it would be great to know the exact reason why she started and then why she stopped. However, this is not heaven! So I am sure it is a combination of the brace, her reminding herself, the Feldenkrais, our PT exercises and so on and so on as it always goes. We kept up the Feldenkrais but had to stop in August simply due to financial reasons. So of course I always have another plan.
Last week Grace Marie had a PT and OT evaluation. Got the results back on the PT yesterday. So in a nutshell, she is delayed and the Peabody testing, according the the therapist had her age as 4yr. 11months, not 5 yr. 1 month. She came back in the 25th percentile in all testing areas. She was tested for about 45 minutes with her AFO brace on. PT recommended therapy once a week. We will get the OT results sometime tomorrow.


Had a much anticipated appointment with the NP at the orthopedic surgeon's office. The NP, Denise, reviewed the MRI of her head and spine from November of '09. She stated that she did not want to do the surgery at this point, but wanted to do another round of BOTOX and casting. They administer this differently than at the Neurologists office. BOTOX is given under general anesthesia, with a mask no IV. Therefore, the patient is not scared out of their minds thinking someone is going to put another hole in their leg, yes, Grace's thoughts, every time we go to another apt. They can get the perfect location, and then the patient is relaxed and the leg can be placed in the proper flexion to have the cast put on. The cast will be below the knee like before and she will wear a brace to ensure that her leg is stretched out while sleeping so the hamstring does not get tight, like before. This will also give the proper stretch. The cast will need to be on for two to six weeks. Then wait and see for up to four or five months. Each person reacts differently to the medication, casting and growth spurts, etc. 


Then another evaluation is done to see if this needs to be repeated. If so just one more time. Then surgery if needed, and only if needed and their goal is only one surgery.
We need to get her another brace and or ankle foot orthotic AFO this time but another kind that she would like her to try, PLS,  Posterior leaf spring, or brace within the next month if possible.
Here is a great article studying the different types of AFO's and the areas of improvements.


http://gait.aidi.udel.edu/gaitlab/gcma/info/abstracts/P29.abs20111.pdf

http://emedicine.medscape.com/article/314838-overview

Another great article giving practical ideas for use of which type of orthotic for our main concern which is equinus, or toe walking.


http://www.fillauer.com/education/ED_afo.html