We are trying to stay calm and not let worry get the best of us. Botox. Anesthesia. Shots. LJ is scheduled for botox injections tomororw morning in his right pectoralis major, right biceps, right flexor carpi ulnaris, right flexor digitorum superficialis, right adductor pollicis brevis and right gastrocenemius muscles. In layman's terms, that is a whole lot of botulism poison being shot into my son's pecs, biceps, muscles that bend the fingers, wrist, thumb and calf muscles. We found out while we were at water therapy today this one of his friends is also having this procedure done by the same surgeon right after LJ's tomorrow! Waiting is the hardest part (oh yea...and also not being able to feed him anything after midnight tonight), but at least we we'll have a friend there to while away the time.
For those of you that never realized, botox has more noble causes then reducing wrinkle lines and de-sweating armpit glands. It's used for cerebral palsy as well. There are varying degrees of tone with cerebral palsy, commonly referred to as hypertonia and hypotonia. I heard Noodles' referred to as dystonia for the first time last week. Hypertonia means lots of extension and stiffening of the arms and legs (spasticity is usually associated with this). Hypotonia means really weak, almost to the point of being floppy and not being able to hold ones head up. Dystonia means that when your child focuses real hard on x task, those muscles go into extension and it takes a while for the child to break out of it. Heartbreaking really.... as I have watched LJ become more easily frustrated these days when he is not able to complete a task or get his wants, needs and desires across because of his motor and communication difficulties.
Tone never fully goes away. But we're hopeful parents wishing that this intervention can bring a little relief to our brave lil guy (and avoid future surgery or medication). Thankfully he won't remember the procedure!
I know and understand your fear of Botox.... hang in there and keep us posted. Give that sweet boy a little squeeze from us.
ReplyDeleteThat is a lot of shots - good luck LJ (and Jenn)!
ReplyDeleteYou're amazing parents, please don't forget it.