I've known for over a year now that Ace has cerebral palsy. He was diagnosed right after his first birthday. He's been in physical therapy since he was 9 months old, and has had 3 physical therapists. I've been told repeatedly that his case is very mild and he'll walk and he'll achieve anything he wants, etc., etc., etc.
Now I'm starting to face the realization that I can't relax with his developmental treatment. I'm going to have to eventually seek more intensive treatment for him, and I just don't know what and part of me doesn't know why. I am probably in denial - a denial fueled by being told repeatedly how mild Ace's CP is.
I'm in this sort of limbo where I don't know if it's mild enough for me to coast along with just therapy and medication or if it's mild enough that (what I feel are) drastic measures would be really beneficial to him. By drastic measures, I mean things like a Baclofen (muscle relaxer) pump, Botox, tendon lengthening, intensive therapy, or even a rhizotomy. I think the rhizotomy is the most drastic thing on that list. From wikipedia:
A rhizotomy is a neurosurgical procedure that selectively severs problematic nerve roots in the spinal cord, most often to relieve the symptoms of neuromuscular conditions such as spastic diplegia and other forms of spastic cerebral palsy.
You want to... sever... nerve roots... in my baby's spinal cord????
GAHHHH. NO. BAD TOUCH.
The baclofen pump is pretty drastic too - it involves spinal surgery but not so much with the severing of anything.
I think I'm also feeling fairly inadequate to deal with these things. I can DEAL with them, but how in the world do I make the decision to go ahead with the rhizotomy eventually? I've been told repeatedly that his case is mild, but it's severe enough that he's eligible for a rhizotomy? Do I REALLY understand rhizotomies? Heck, do I really understand cerebral palsy? Can anyone but a neurologist truly understand the condition? How can a stay-at-home college dropout of a mom understand this enough to make a truly informed decision on SEVERING HER BABY'S NERVE ROOTS???
(Well, I do watch House and Grey's Anatomy.)
It's so, so, so hard for me to understand the complexities of Ace's condition. I ask his therapists and doctors as many questions as I can, but they're limited to trying to explain these things to me using analogies and "little" words. They can't really impart all of their knowledge to me without me having all of their training.
So here I am, knowing that I don't have nearly enough knowledge to make an informed decision to take an extra step in Ace's development, being led by people who all have their own opinions on what direction his treatment should take, which only serves to further confuse me. It's hard to say "no" to someone and basically tell them that your maternal instinct trumps their dozen or so years of medical learnin'.
Do I go balls to the wall and seek more drastic treatments for him to be able to eventually lead a more "normal" life? Just how much intervention do I seek for a child with a reportedly mild case of cerebral palsy?
I'm gonna go hop on the treadmill and watch Wife Swap. Now THAT, I understand.
1 month ago