A general response
- Hi Everyone,
I realized today that I haven't really posted in awhile. First of
all, Javad is doing well. He came home on Labor Day and has been
doind great. He has been off the vent for as long as 4 hours at one
time (and usually a few hours later!), so I am feelinig really good
about that. He came home with a cuffed trach in and I changed it last
night back to an uncuffed. Viola...he started making noise again. It
is so nice to hear his sweet voice!
I read the latest posts...welcome Dana. This is a great site! Glad
you have found us!
Stacey, I am sorry to hear about the latest on Briar. That must be
frustrating! I wouldn't worry about what the MRI said...remember we
don't use that much of our brain anyway. Javad also uses the signing
time videos. Everytime he gets sick, we have to go back and "relearn"
he signs. He know a lot of signs, but doesn't always use them. I
would suggest getting them and having Briar watch them. Even if he
just mimics, as time goes on, he will use them! As fa as secretions,
Javad is on Robinul (2mg) a day. Sometimes we have to increase it
when he is sick. We have also been doing exercises with him and his
mouth (and eyes). We have him blink (which he now does spontaneously)
repeatedly, open his mouth wide, stick his tongue out. smack his
lips, hold his mouth closed. These have helped his facial muscles
Hmmm...there was something else, but I can't remember! I hope all is
well and Happy Birthday to Jack and Jacob!