Monday, January 9, 2012

2011 in a Nutshell

I decided since I haven't posted in a while that I would travel down memory lane just a little and recap some of Kannon's main events in 2011! I found this to be really fun actually, and it's amazing just to see how much has been accomplished in just a span of 365 days. In our family, we try to keep it a constant reminder that we never know when our time is...and if there is anyone that had taught us to live each day to it's fullest it's this little guy right here.

So to begin, here is Kannon's picture in January 2011 vs January 2012. He grew like a little weed!

He also had his very first 48 hr EEG at St. Francis Hospital

He was pretty excited!

Then, he figured out to hold up that big ole noggin' twice...I'll explain that here in a minute...

He laughed for the first time & yes we got it all on camera!...It's hard to tell (you have to listen really carefully) because he also toots on there too, so maybe that's what he was laughing at...we know we were! This was a GREAT day in our house!

He also got fitted for his first back brace...and it's the cutest little thing...

And it came in his favorite print...camo!

He also got to stand up for his first time!

On his first birthday (April 1st) we landed ourselves in the hospital for numerous seizures. Which after counting, he was in the hospital a total of 9 times this year.

That day, they didn't keep him overnight. They increased his medication & sent us home in time to celebrate!

Then, the day after his celebration...we landed ourselves back in the hospital. This was a pretty pivotal moment for us. It was then that Kannon's seizures got more severe, and even more out of control. He lost the ability to eat, hold up his head, smile, and some other things as well.

Since he had lost the ability to swallow we made the decision to have a Mickey Button placed. He went into surgery April 6th. Looking back, we estimated that if Kannon had 5 seizures a day (which some days he had 20 plus) he had a total of 1,825 seizures in year 2011.

It wasn't long after that when we made the decision to start him on the Ketogenic Diet. We went to Houston (Texas Children's Hospital) for a week stay and began our "Ketogenic Boot Camp" as we like to call it. It wasn't too bad for Kannon he is after he won the pirate hat making contest... he was pretty happy about & so were we!

When we got home from Houston, he made best friends with his cousin.....Crue. Kannon wasn't sure what to think about him...I think Crue thought he was food ha ha.

He made his first, of many, trips to the zoo!

And the lake! I have been told he looks like a mini Zoolander here!

He had 200+ visits to therapy this last year...and man he loved every bit of it!

Unexpectedly Kannon developed a serious case of pneumonia, which put him in the Pediatric ICU (PICU) for quite some time. He was started on an IV antibiotic used for serious bacterial infections called Vancomycin. In this picture he developed what they call "red man syndrome" from the drug. You can see how red the top of his head is, by the IV. His face/head also started to swell so bad that when you held his head in your hand, it would leave your indentions. They immediately started him on Lasix to flush his body of the fluid & to stop the swelling.

Here he is with his moose we got him in the gift shop to cheer him up a little. His right eye is still swollen shut, but the red had finally gone away. This was a scary time for us all, the Dr's were very close to intubating him, but instead we tried out something else called Vapotherm. He responded very well to it :)

Many people said prayers, and they were answered! They started Kannon on a BiPAP machine (similar to C-PAP). Since then he has made so much progress & has never looked healthier and happier! Here he is on his BiPAP...which was special ordered because there wasn't anyone around that had a BiPAP mask small enough...Pretty cute huh?

Here we are escaping from the PICU for a little while...and getting as much sun as you can in a hospital.

Grandpa came to vist & pass out kisses!

And it wasn't long after returning home from ICU that he started lifting his head again! God is good! Kannon had more energy, endurance, and strength than ever before.

Kannon was the cutest puppy ever for Halloween...!

Kannon also made his debut with Children's Miracle Network at KXY's Love Kids Radiothon.

And surely none of us have forgotten the day Kannon had gotten stuck 35 times for an unneccessary IV. Which they never ended up getting a vein, so in all actuality it was a complete waste of time...and not to mention violation of patient care & patient rights. I have many people awaiting the update on this...and you might laugh...They established a "Common Sense Policy" in the MRI department to keep things like this from happening to other children. I'm not sure how they came up with that name... ;) wink wink ;)

Golden Corral Raised $877 to go towards "Kannon's Fund" at Tinker Federal by raffling off a TV!

He learned how to play the piano!

and the iPAD!

We are thrilled at how well Kannon is doing & we can't wait to see what 2012 has to offer us and Him.

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
Psalm 23:4


  1. A series of misdiagnosis have allowed the spread of Charles's colon Cancer which has now spread to his liver and kidneys, We abruptly found out about his cancer on may 26th 2013, it is spreading as we speak we are looking to try something called cannabis oil possibly chemo therapy.
    This is a extremely hard and sad time for us, My father is the sole provider for his wife and 4 kids, twins 12 years, son 16years and daughter 13 years, he is now no longer able to work and is not only stressing about surviving but also how he will support his family and pay for alternative life saving treatments.
    This traumatic finding of cancer is extremely sad and stressful on our family; we are trying anything we can to get Charles healthy
    We have started the Phoenix Tears/cannabis oil Treatment partnered with Chemo Therapy and a major change in diet. The Phoenix tears is crucial to saving charles's life these treatments are 80$ per day over 2400$ per month.
    Any support you can contribute to help Charles & family make it through these tough time would be so appreciated.
    Thank you for your love and support!

  2. My name is Jessica and my daughter Natalie shares the same chromosome diagnosis with your son! We recently started her on the ketogenic diet as well! I would like to know more about Kannon's progress, do you have instagram?