Spasmodic Dysphonia

It appears that we are one step closer to having a name for Kody's voice issues, "Spasmodic Dysphonia"
Currently Kody's voice sounds like a cell phone that keeps breaking up. :0(

We saw Dr. Barr {Kody's Neurologist} on Thursday and true to his word he had done some pretty intense research for us. Although, Kody still has to be brought to the hospital {Arnold Palmer in Orlando} and officially diagnosed, the Google search I did on this disease explains absolutely everything, down the the eye tics that Bear has been going through.
Here's a great write up about it, it explains so much more then I ever could.

Spasmodic Dysphonia

Needless to say, we are pretty bummed as there is no cure for Spasmodic Dysphonia, however, there are temporary fixes that he would have to keep going back every three or so months for.
That "fix" would be to inject Botox through his neck and into his larynx.
If that doesn't work, the second "fix" would be surgery to cut one of the nerves in his larynx.
Hmmmmmmmm...I hate that idea, alot.
However, I'm thinking if there was any leftover Botox, maybe they could spare a few drops for my own pretty darn tired eyes. *wink*

In all seriousness though, if Kody does, in fact, have this disease, ultimately he could lose completely the ability to talk.
I talked to Mrs. Jones {our favorite teacher in the whole world} and told her everything. She will be helping us find sign language classes, not only for Kody, but for all of us...in the event he may someday need it.

My mind is just going everywhere, there is so much to think and worry about. Right now, we are thinking positive and we have "Hope". It's all we can do besides, live for the day and not dwell on the future {not too much anyway}.
In the meantime, with every ounce of strength and love we have for that boy...we are committed to guarding him, watching over him and protecting him for the rest of our lives.

I'll post some pictures a little later on today. I still have to take the pic's of Kody's cake off the camera. Better late then never, I guess. :0)

Have a beautiful day everyone!!!!!

Love, Kim

Lucky Seven!!

Kickin' Cancer's A$S for Seven Years, Baby!!!!



Seven years ago this morning is when we received the news that our then, 6 1/2 old son, would not likely live to see his 8th birthday.
Seven years ago, hundreds of prayer chains all over the world were started which brought Kody his {and ours} miracle.
Seven years ago we discovered new Dr's, new hositals, new medical terms to learn, new friends, and new fears.
One thing, in these past seven years, we never lost is "HOPE". And because of our good friend, Juliana Banana's Dad, Mr. Terry, "Without Hope There Is No Hope" has become my most favorite quote in the entire universe.

Just think, in another 7 years our Bear will be 20 years old!!
WOW, that sure gives us something to think about, huh?

Have a great day everyone...we are off to get Kody to his Neurology appt. and then we'll be stopping off for his celebration cake.
Anyone wants to celebrate with us, you know where to find us, and if you can't..today is a perfect day to eat lots of chocolate cake. :0)

Love, Kim a/k/a the most proudest Mom in the world of one of the worlds most bravest brain cancer SURVIVORS!!!!

Tomorrow's News Today

I won't be able to get back on here until tomorrow or until I ask Hallie how to postdate an entry..whichever comes first.
So...I'll just let you all know that we are taking Bear back to Neurology tomorrow afternoon in Orlando for a seizure/tics maintenance check.
Also, tomorrow is a really big day for Kody, can anyone guess what it is?

Have a great night everyone!!

Love, Kim

Don't ask me why..but this clip just never gets old. LOL!!

Red

Just cuz. :0)

Love, Kim

Wild Krazy Color and Kody

A bunch more from today and believe it or not, there is alot more. :0)

















See ya'all tomorrow!!

Love, Kim

One On One Time With The Bear

So, it dawned on me today that in the madness of the holidays and having some time off from work, that I really didn't spend much one-on-one time with the boys.
So..today Bear and I escaped for an hour and had a long talk, a bunch of laughs and a mini photo shoot to boot. What is better then that?

Here's just one for now...



*click on photo to see bigger*

It was taken at the oldest school in Leesburg {I've posted other shots of this building}. We found this wall at the bottom of a staircase..it was a small spot to squish up in, but Bear was up to the challenge and I think he pulled it off just fine.

I'll have more later on. :0)

Back to work and back to school on Monday, Christmas/New Years vacation is almost officially over. :0(

Have a great day everyone!!!!

Love, Kim

Happy 2009!!

We hope your New Years is a very happy and healthy one...a year that brings you and your families everything good.
Since *9* has always been my lucky number, I have a feeling 2009 will be a pretty darn good one. :0)

Here in Florida, where it is still shorts weather during the day...New Years dinner went a little something like this...

Fresh veggies...



Fresh fruit..



Heavy on the cherries...



Italian bread with olive oil dip...



And a few pretty happy kiddo's...



The only thing I didn't get a chance to snap a quick picture of was the turkey that was smoked all day long and it was dang good! Can I hear an Amen? AMEN!!!!

Have a great day everyone, till tomorrow..

Later Gators!!!

Love, Kim