So we had physical therapy last week. On the 14th we received the diagnosis that the balance portion of her inner ear was unresponsive when tested. At that point - the prognosis was -- there is no cure -- we were going to teach her how to
use the other two systems involved in balance to do the best we could to compensate for the birth defect. The game plan was the same as you would employ for someone who was blind or deaf and you teach them to use the rest of their senses to
fill in the spots.
Upon arriving at physical therapy and answering a battery of questions -- a Much more in depth verbal session than the day of diagnosis. He stated that the doctor had instructed him to put her through the entire battery of tests so that we would have
every piece to the pie. This was impossible to do on the day of diagnosis because the tests done that day already took 3.5 hours.
We set out on a dozen or more different physical tests that day. The older she has gotten she has begun to have migraines. We now know from this they are Vestibular Migraines (caused from the inactivity of the vestibular portion of her inner ear).
The fact that she is even having these migraines means that the vestibular part of her inner ear function isn't completely dead. She completed roughly a dozen physics tests that all seemed to confirm that her inner ear is there - albeit, barely
functioning.
We were given daily exercises that (in simple terms) removes her ability to depend on her body or vision and Force the inner ear to work a little. Right now the inner ear is a little like the free loading employee who doesn't want to work and always finds
a place to hide and lay down while everyone else carries the load. The goal is to make everyone sit down and cause him to get up and try.
When doing some of the tests - she had to stand on one foot, or with her feet in awkward positions. With her eyes open she could perform the test to the time goal even though she was wobbling quite a bit. When the same test was performed with her
eyes closed she began to wobble immediately and completely fell over by 9 seconds. This brought up the fear and she informed us there would be NO more tests like that.
Much to my husband's dismay one of the home modifications we have to do is to completely remodel her bedroom with night lighting - furniture to better suit her needs than what we have right now -- and flashlights readily available as night time and darkness
has been a huge obstacle full of anxiety for her.
She struggles with dizziness and vertigo and says that she feels pushed from different angles sometimes.
This is the picture she happened upon and brought to me saying she sees this many times a day. It usually just for a couple seconds.
We are currently keeping a diary of days she has headaches and dizzy spells and the food eaten immediately before that to be sure there isn't an allergy making things more difficult on us.
All in all I am very encouraged. The organ isn't dead with "no cure" we just have to give it a workout and build its muscles. This is something the Westover girls have never had a problem doing but this is no ordinary Westover girl!!
😊
Thanks for all of your love, concern, and prayers.
There are bigger announcements coming regarding this condition but that will happen in the next few days! 😊
