Wednesday, October 24, 2007

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 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


AJ said...

Self Defense class sounds like the perfect thing to get your mind off of a long hard day.
Hang in there and try not to think too much about the drilling of holes into sculls thing...
and can I just say WOW, Kody is turning into quite the handsome young man!
Continue with the ass kicking, tough guy!

Anonymous said...

Kim, praying that Kody's problems can cured with medication (never give up the dream) Kim as a mother my heart breaks for you. If only a mothers love could protect and cure our kids


Christie said...

Oh kim, my heart goes out to you and your family. You guys have been through so much ... keep the faith and we'll keep you in our thoughts and prayers :D


Anonymous said...

Sending you big hugs Kim. Give Kody one for me too.

Also, one of my sons had severe infant apnea and reflux. I have lots to share with you. I'll email you soon.

--Andrea in Texas

Cheyenne said...

Kim, I read your blog every day. I want to leave comments but I just don't know what to say. Just know that I have been and will continue to pray for Kody's well being.

Jeri from Hawaii said...

Not exactly the news you had hoped to hear...I am so sorry. Just know that there are a lot of folks out here praying for you and your family. Kody has been through some tough times before, he's not about to give up now. You take care of yourself and your family and know that the prayer warriors have your back.

Lisa said...

Well Kim at least you have options and possibilities and things to try and none of this is because teh cancer has come back...that *has* to be worth major celebrations, well, a deep sigh of relief and a silent prayer of thanks anyway. Love and prayers to you all.

Kim Cyr said...

AAHH he does look so tired....but I am sure things will work out for the best!!! Keep shining Kody!!!

Amy said...

Praying for the bear as alway's. Hopefully healthy good times are in your future.

Anonymous said...

Kim, I have tears in my eyes, "hearing" your pain from yesterday. I'm sure the news could have been worse, but that doesn't help the uncertainty you have right now. Kody is one tough kid, and when you mentioned the 'inside' of Kody I had just noticed how tired his eyes looked to me. The spark wasn't happenin' like normal, BUT we all know Kody and TRULY BELIEVE he will come through this, just like everything else.

BTW, when my 3-yr-old just saw Kody's pic he said, "I love Kody". :o)

Hope your day is better (somehow) today.


Connie F-G said...

Sorry the news wasn't great. I hope you get answers and solutions soon. Know that there are a lot of Bear fans out there praying for him and your whole family.


terri said...

Kim, Yeah Kody looks tired...but you know he's a fighter!!! Don't ever give up!!! Even though I know you won't,hang tough just like your "HERO"((((HUGS))) to everyone!!!sorry this took long..this is the 1st time I've blogged!!!(LOL)
luv ya,

rocketbear said...

Kim & Kody, You can see and hear the emotional toll the day took on you. You both our in our thoughts and our hearts every day. I hope the dream of a normal day is yours soon. ((hugs))

Trista said...

Just to let you know that you and your family are thought of and are in our prayers!!
Love and Prayers
Quilts of Love ^Angel^ Trista ^i^


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