Tuesday, June 10, 2008

Mohawk Dude's Update

Before the day gets any crazier I just made myself a steamin' hot, super sized, high octane cappachino, edited one photo of Bear and here I am to continue yesterday's update.

First I'll start off by saying....


These new doctor's..they are sooo right on it.
Yesterday we met with his new neurologist.
We, for the fist time in forever, felt like we were not rushed, we had every question answered with explanations and diagrams. Kody was actually listened too..well, let me rephrase that..
When I finally was able to shut up and let the poor kid answer for himself {I do have that horrible habit}.
We spent a good two hours with Kody's new dr. and nurse practitioner and when we left, we left with great vibes.

So..here's the lowdown..

Kody, as we know has alot of severe headaches. He's lost alot of school this year because of his headaches that wake him from his sleep and or are always present when he wakes up..whether it be from an all night sleep or a nap.
He also gets double vision and loss of balance/disorientated during these times.

His Shands Doc's had been treating him for migrraines..which I've always questioned because being a migraine person myself I know a thing or two about them and I know that migraines always end up with that barfy thing in order to ge
t any relief.
Kody hasn't got that...he just suffers from headaches that strike him in his sleep.

So..the problem is within his shunt.
It works perfectly when he is up and about or if he sleeps with his head inclined {propped up on at least three pillows} but should his head drop off those pillows..the CSF {cerebral spinal fluid} is not flowing out of his ventricle, causing swelling and pain.

The simple solution to that is installing a one way valve into his existing shunt.
Which, will keep the CSF flowing while he is up and prevent it from building up while he is asleep.

Yes..that's another surgery and while we always hesitate because of the whole anesthesia issue {Kody has a hard time waking up from it in the past}, our savings grace this time, in my opinion, is that this time he is much bigger, much stronger and much healthier.
So, in as much as Karl and I hate the idea of another surgery..I am not having second thoughts/cold feet this time.
I think he'll be fine and if it puts a stop to his headaches...then that can only be a move in a positive direction.

Kody is OK with it, as long as it doesn't interfere with his beloved marital arts.
He may be down a few days...but he'll bounce b
ack into the rhythm with no problems, no worries.

We'll find out more about this surgery on June 30th when we go back to the neurosurgeon.

OK, so that's one problem we finally got an an answer too.

Problem #2..his voice/speech problems.

That is still a mystery.
Yes, the neuro. clearly saw/heard what we hear everyday..yet every test came back normal.
The scar tissue from his past surgeries is way up higher on the stem then the part that controls his voice..so that is a possibility most likely ruled out.
His new neurologist is going to be researching and wh
en we go back and see him in July, hopefully he can give us some answers.

Sometimes I wonder if that stems back to the shunt too?

Problem #3...the eye/facial tics that are coming back again.

Kody has been taking Orap for the tic's, however, even on the max dose...the tics are returning with a vengeance.
This doctor really wants us to stop the Orap mainly because it has been known to cause liver and heart problems.
So..starting tonight he'll start a new drug, once a da
y, with an increase every week until he hits his "sweet spot". The new medication is called "Stattara" {I probably spelled that wrong}.
In two weeks we'll start to wean him off the Orap because that is one of those drugs that you can't stop cold turkey..it could cause heart failure.

Problem #4...seizures.

Although he has staring/blank out spells lasting a few seconds every now and again {or maybe it's girls on the brain?}, he hasn't had any real seizures for a while.
On July 2nd, we'll take him back for an EEG.
If that comes out normal..no seizure activity, then we'll take him off all his seizure med's and give it a try flying solo.
If he's OK..then that's awesome..one less medication, one less worry.
However, if he does eventually seize..he's back on the med's for a long, long time.
Fingers crossed on this one, no seizure means that eventually he will be able to drive a car!!!

Problem #5...The Tumor.

It's still there though remains completely stable.
The only thing we'll do is keep an eye on it having routine MRI's and of course, keeping a close eye on physical and or personality changes.

Problem #6...The Lumbar Spine MRI Results.

Kody does have the beginning stages of disc disease. He has swelling/bulging in between the L4 and L5 like I had mentioned before.
This is not something typically seen in children and in all reality, it should hurt.
But...since Kody has about the strongest abdominal muscles on any 12 year old kid I've ever seen, he is experiencing no pain at all.
Normally, the therapy for this disc bulging thing would be to strengthen the abs anyway.
Because of Kody's intense martial arts training, the boys got abs of steel. :0)
His "goal" this summer is to develop a "six pack"..LOL..how cool is that?

Other then all that...they were very impressed with Kody's awesome strength, his personality, his outlook and his perfect manners.

We were impressed at the way they took the time to listen to him, to explain things to him and to really get to know him.

I was also impressed with the high def TV in the waiting room...DANG!!!!!!!! :0)

So, our next Dr. appt. in Orlando with the neurosurgeon is on June 30th at 2:30 PM.

But, before that Kody is going away for a week. Next Tu
esday, one week from today he'll be taking off for the time of his life at Camp Boggy Creek!!!!
He's stoked....I miss him already. LOL!!

Welp, I better get going cuz there's lots to do around here today.

I'll leave you with the one photo I was able to edit up a little this morning.
Crazy thing was because of all the sun blow outs, I almost threw this one in the trash last night.
Turned out after some fun and funky post processing..I like it, who knew? :0)

Have an awesome day everyone..stay cool!!

Love, Kim


Wonderful World of Weiners said...

Connor and Kody have the "hawk" in common!!!

Hallie :)



Jenner said...

Love the mohawk Bear! So glad the new docs are working out. Sounds like they're just what you needed. Love, Hugs & Prayers from WI, Jen

rocketbear said...

What a great update, Kim!!! Glad to hear the boy is doing so well....even if he is rockin' the mohawk. ;) All those great martial arts training that boy is s tough one! Great, great news for you all!!!

Anonymous said...

Looks like my reply to the first Mohawk pic didn't come through. It didn't appear to, from my end, so that's why I'm back...and found the update from today too. BONUS!! :)

I'm soooo glad you are having such good luck with the new doctors. Sounds like you've been given tons of information. Doesn't it feel great when you aren't rushed at a doctor's office??!!

You aren't just a kiddin' when you say to keep cool, Kim. We're on our 5th straight day of 90 degree temps. And for folks that don't have central air (and sometimes a window a/c unit), we're all suffering! Tornado watches til 6 tonight....."lucky us"!

Have a good day!


CJ said...

Kim, I am SOOOOOO glad you are happy with the docs in Orlando. Hang in there, loving the updates. Love CJ

Cheyenne said...

So glad to hear things are looking up for Kody. Thank goodness for better doctors. The saying is always get a second opinion...and more if needed.
Love the Mohawk BTW.

Kristine said...

I am so glad you found a great doctor. It is so wonderful to have someone that will actually work for you and help you.

The mohawk 'fits' Kody perfectly :) Love it!

Kristine from Minnesota

Lisa said...

Wow Kim, I'm so pleased you now have a plan, some answers and a way forward. I've lost the plot somewhere in Kody's journey - why can't he have surgery/chemo/radiotherapy on his remaining tumor? Lots of love to you all, I check in here all the time, Kody and the whole K clan are such an inspiration. Love and prayers for you all.


What good and promising news for Kody! I like a doctor who has a plan and takes the time to explain a course of action. Makes everyone feel at ease (read: parents!)

I've had such a negative medical experience for myself this week, it's great to hear some good news!

PS Loving the haircut! Great for summer!


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