My Hero

Sorry to keep you all waiting..we got back home about 5, maybe a little after 5....unloaded the car, settled down, made dinner, ate, cleaned up the kitchen and I just now have about 5 minutes before I am off to bring the boys to PWCST {self defense class}.

Today, at Shands...the Cat-Scan and Shunt Series went off without a hitch. The wait to see Dr. P, went on forever...or so it seemed.
Their version of "running a little late" meant sitting around in a small chair for another 4 hours. UGH!

Anyway...the news we got wasn't what we were really hoping for but this is how it went.

As far as Kody's voice..they are clueless.
Maybe a ear/nose/throat doctor can help so they will set us up with one at Shands.

His C-Scan showed small ventricles which is good...or so we thought.

This is what Dr. P explained..

He didn't think the whole loss of voice/slurred speech had anything to do with his shunt but he said his other issues could.
Sometimes when kids have a shunt in thier head for a while {it's been 4 1/2 years for Kody}, the ventricles can stay small but intracranial pressure can still happen.

We have to see Neurology to rule out that his med's aren't the reason for al his new symptoms. If they are, great.
If not..then Kody will need a fourth brain surgery to test/monitor his intracranial pressure.

It's about a 45 minute surgery as to where Dr. P would drill another hole into his skull and insert a set of wires that is attached to a monitor which reads his intracranial brain pressure.
Then...and I am not sure about this because my mind was in a whirl at this point...Dr. P would place something in/on or around Kody's shunt that will continually measure the pressure...so another surgery for that wouldn't be nesessary.
At least that's what I think I heard....I'm just not 100% sure anymore. :0(

I did take a few minutes when we got home to do a super quick research on the web and the first few sites I found said something about intracranial presure/VP Shunts and uncommon symptoms.
Wouldn't you know the two things that jumped out at me was...

"Paralyzed vocal cords" and "Involuntary eye movements"

Well..if that just doesn't explain our past 7 months?!

Tomorrow I'll call Neurology and get started there but tonight, I just want to forget the whole day.

I'll leave you all with this quick snap I took of Kody, My Hero, today.



If you look hard enough, somewhere under that tough guy exterior, you can see a little boy who is tired. Who wants to so desperatly be normal again.
I would give up my life in a heartbeat to see that he could have his life back again.

Thanks so much for checking in...gotta run again!

Talk to you all tomorrow. :0)

Love, Kim