It appears that we are one step closer to having a name for Kody's voice issues,
"Spasmodic Dysphonia"Currently Kody's voice sounds like a cell phone that keeps breaking up. :0(
We saw Dr. Barr {Kody's Neurologist} on Thursday and true to his word he had done some pretty intense research for us. Although, Kody still has to be brought to the hospital {Arnold Palmer in Orlando} and officially diagnosed, the Google search I did on this disease explains absolutely everything, down the the eye tics that Bear has been going through.
Here's a great write up about it, it explains so much more then I ever could.
Spasmodic DysphoniaNeedless to say, we are pretty bummed as there is no cure for Spasmodic Dysphonia, however, there are temporary fixes that he would have to keep going back every three or so months for.
That "fix" would be to inject Botox through his neck and into his larynx.
If that doesn't work, the second "fix" would be surgery to cut one of the nerves in his larynx.
Hmmmmmmmm...I hate that idea, alot.
However, I'm thinking if there was any leftover Botox, maybe they could spare a few drops for my own pretty darn tired eyes. *wink*
In all seriousness though, if Kody does, in fact, have this disease, ultimately he could lose completely the ability to talk.
I talked to Mrs. Jones {our favorite teacher in the whole world} and told her everything. She will be helping us find sign language classes, not only for Kody, but for all of us...in the event he may someday need it.
My mind is just going everywhere, there is so much to think and worry about. Right now, we are thinking positive and we have "Hope". It's all we can do besides, live for the day and not dwell on the future {not too much anyway}.
In the meantime, with every ounce of strength and love we have for that boy...we are committed to guarding him, watching over him and protecting him for the rest of our lives.
I'll post some pictures a little later on today. I still have to take the pic's of Kody's cake off the camera. Better late then never, I guess. :0)
Have a beautiful day everyone!!!!!
Love, Kim