Wednesday, December 03, 2008

It's too early to be this confused.

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.

15 comments:

i'm black betty said...

good lord, honey. those decisions make my head spin. i don't know how you deal with it. what does his doctor/pediatrician recommend? when would you have to make these decisions.

prayers ascending, love. (((HUGS))

K Storm said...

I'll be praying for you as you try to make these decisions.

Alice said...

would you like to talk to someone a few years ahead of you? My aunt has been thru all this and will tell you whatever you need to know...and answer questions. She's good at that.

Erin Steele (previously Domeyer) said...

My brother was a preemie twin and he has cerebral palsy and has had some surgeries and things also but i am unsure of what treatments he has all had. If you would like i can talk to him about what he has been through and see what has worked for him. He had the tendon lengthening surgery and braces but i am unsure of everything else.

Sharon said...

I'd be going bonkers, too.
Prayers for ya! I'm sure you'll do the right thing.

mayberry said...

I think you get all of the information you can, just like you've been doing and then, when it comes down to it, you pray and go with your maternal instincts. God gave them to you for a reason.

I hate Wife Swap but it's like watching a train wreck - when I start watching, I can't look away. I would kill my husband if he swapped me for a week. I don't know where they find those people but it scares me.

Watercolor said...

Ugh. Seriosly. Someday I may have to make the decision about putting a shunt in my brain. I think I'd rather cut off my hand with a butter knife.

Deep breaths. Learn as much as you can. Only have doctors you trust. Only listen to a select few. Drown out the rest of the voices. Pray. Make a decision. Sleep on it. Deep breath. Go with it. Never look back and question yourself.

Aidan's mom said...

Stacey,

Forgive me for not knowing the answer to this. Have you been to a Shriner's hospital? And do you have one near you? ALL of their care is free to the patients and they are one of the premier places for orthopedic conditions, CP being one of them.

My nephew has mild CP and began walking about age 3 1/2. He has had AFOs done there as well as some botox I believe.

Anyway, my friend worked for them a few years ago as an education coordinator and spoke so highly of the skills of those orthopedic physicians.

Good luck darlin!

Nicole Bradshaw said...

I think you are doing everything you can do. As pp have said, listen/learn as much as you can, think on it, pray on it, and make the best decisions you can. Then, don't beat yourself up about them.

Love. love, love, love. You are a great lady.

sinister_n_evil said...

Hi Sweetie,

I know where you are, and we are in similar boats... but at least you have options for ace... I can't tell you what is the right answer... Nobody can... Only time will tell the severity of Ace's condition and he may not even need any interventional surgeries at all... I do know that operating on tiny nerve stems can do LOTS of damage and (from experience)leaking spinal fluid is VERY painful.... Take your time... Ace isn't in a hurry to grow up right now... and I know how it is holding your breath waiting for that next milestone to be reached... but ya gotta breath or you will turn blue and drive yourself crazy... hang in there... you are not alone... Drew is there with you... and Ace understands more than you know... give it time... we will be praying for you... and read as much as you can ... you are an educated determined mother... that is an unstoppable force that can intimadate any doctor .... don't be afraid to interview doctors... make them compete for your work...

hugs and luv..

Jen said...

you are a great mother & will continue to be a great mother. You will make the right decisions when the time comes. Research & informed decisions, with a Mother's love, it will all work out one way or another. I pray for little Ace all the time. He has touched my heart and so have you.

Hang in there, you are one hell of a strong woman.

From the Doghouse said...

I can't add anything that hasn't already been said. Grill the doctors, do your homework, pray and go with your instincts from there.

Emily said...

I'd be happy to put you in touch with some pretty awesome neuro people. All are mothers and/or parents. They'd be willing to just sit and chat with you if you want somebody to bounce questions off of. I could send you their email. None specialize in pediatrics but they could probably answer some general questions. Sorry you have to make such hard decisions!

sinister_n_evil said...

Hi hun...

I just had to add a note... I got in a conversation with our dentist cause she has a daughter with CP... and she knows I have a 3 yr old with Downs... and we were ragging on Louisiana on how the state has so few resources for kids with disabilities.... Just so you know... Doctors with challenged children strugles with the same choices that we have to make too... She told me that she is thinking about moving to Denver because her daughter is mainstreamed at a private school where she is paying 10K a year in tuition an constantly getting called to the principal's office because of complications due to her daughter's challenges, and the other kids just being cruel... (did i spell that right?)

just know that you are not alone... you have a world of supporters if not financial... spiritual...

Bird said...

The things you talk about here are the EXACT reason that I took my hiney to Canada to pursue wacky, alternative therapy. I didn't like what the future was holding. Charlie seems intelligent, but his body is messy. Low tone pretty much everywhere. I hate the idea of invasive surgeries, or surgeries that would just have to be re-done further down the line. Additionally, I'm not fully convinced of the efficacy of these surgeries. My hope is that putting in hours now will help keep my child off the chopping block.

That being said, Charlie is clearly worse case than Ace. Ace may not need anything invasive. What I'm trying to say is that your mommy-heart is the way to go. Follow that wherever it leads you--surgery, more therapy, or none of the above. I believes that a mother's heart knows more than the wisdom of doctors.