A Moment of Frustration.

I know I have been pretty positive through this whole experience, but everyone is entitled to a moment of weakness, a little bit of tears, and an ounce of frustration. Well today is my day! Let me just say through this whole experience one important thing I have learned is to go above and beyond to protect and fight for my sons needs. That being said, I am going to vent. First I will explain the beginning of my day and finish with my rude encounter with "Grumpiest Old Man" (the sequel to Grumpier Old Men). I was actually having a good day despite all the things that could have ruined it. But so that doesn't happen, I will put it all on here, then move on! It started by receiving a bill for $193.00 from Walgreens Respiratory Care. This was a bill I knew would come knocking on our door if I didn't call DHS and get this one TINY mistake squared away....Kannon's birth date was wrong. No problem, right? Easy peasy lemon squeezy? WRONG. I have spent the last 3 months trying to call DHS and have them change Kannon's birth date from 4/11/10 to 4/1/10. After coutless transfers & leaving numerous messages on voicemails & some even to higher administration and STILL no answer or phone call back...I have finally received the bill that I had been trying all this time to avoid. URGH. It only took 3 more phone calls today and then an hour of being on hold to finally tell someone what I thought. After that it took approx 3 seconds to fix the mistake and then be done with it. Really? No one should have to go through all of that just to get a very simple problem fixed. Then, to make my day even more dandy.....I was circling the hospital parking lot trying to find a good enough place to park that wasn't too far away so I could unload everything of Kannon's, still get him up to his appointment, check him in on time, and then feed him at exactly 2:30pm (the ketogenic diet is VERY strict on feeding times). I forgot Kannon's handicapped tag so I was looking for a regular parking space just like anyone else should do. Finally, I found someone backing out! Yay! But about the time I started pulling in the spot, someone zipped in front of me and pulled their car in the space first! My very natural reaction was to honk. I didn't do it in a rude way, just a quick honk and that's it. And oh man, you would have thought all hell broke loose. This guy threw his car into reverse and waved me into the parking spot, and so I pulled in. As I am looking in my rear view mirror, I notice this guy getting out of his car, and as if that wasn't enough already, I noticed another lady getting out of the car sitting behind his. I'm thinking...great, really people? So then I get out of my car because obviously he had something he wanted to say and I wanted to hear it....and this older guy is screaming at me and telling me how he has been following her since she walked to her car (and I'm thinking "wow you sound like creeper") and how he is here for his radiation treatment and kept repeating "I have cancer!!! I have cancer!!" He must have been in his 50's or so. He went on and on about cancer this, treatment that....and I let him speak, and I stayed very calm, but underneath was different story, my blood was boiling and this guy was getting me so pumped the more he talked, but I contained myself until it was my turn to talk. And when my time came, I let him have it. I started out with first telling him "I don't even want to hear it. My mom lost her 6 year battle with cancer this last November and she never griped the way you're doing right now. In fact, had you comfronted me about your personal situation in a more generous manner then I would have been more than happy to give up this parking space so my handicapped son and I could park somewhere else. And why are you giving me a hard time about being more deserving of this parking space when there are are three open parking spaces specifically reserved closer to the entrance for those receiving radiation treatments? I am not moving my car. Sorry." Needless to say, he nor the lady said another word and both of them got back in their cars and drove off. I never thought I would have to argue with someone over parking in a normal parking spot...but it happend and I am still a little confused by that ;)

Kannon is Learning :)

Kannon has been working really hard in physical therapy trying to learn the word "go" and associate that word to make his toys play music. This video really captured how much he has accomplished and learning how to play. This is huge for him! We are excited, so we hope you enjoy it as well....just don't pay any attention to me talking ha ha that's the embarrassing part! Hey, whatever helps motivate him right?

A Great Day!

To take some pictures! Kannon just got home lastnight from being in the hospital for pneumonia by aspiration. He is doing better, so we thought we would step outside and get a breath of fresh air! Hope everyone is enjoying this day as much as we are!

PS COUNTING DOWN TO TRIP TO HOUSTON TO START THE KETOGENIC DIET!!! WE ARE SO HOPEFUL! AND VERY EXCITED!

The Way

**THIS POST WAS WRITTEN ON TWO SEPARATE DAYS. DUE TO OUR CRAZY SCHEDULE I HAD TO FINISH THE POST AT A LATER TIME !

PART 1: WRITTEN ON APRIL 5TH (DAY BEFORE KANNON'S SURGERY)

So before I begin with my post, let me catch everyone up. Kannon is now a one year old! I can't believe at how fast time flew by. It is amazing how strong he is and all that he has and will continue to conquer in his life. It has been a journey that's for sure...I learn from him everyday, and in so many ways he reminds me of my mom. So strong, but yet so fragile at the same time. Sometimes it is hard not to question God's plan for us, and why things happen when they do...and I will be the first to admit that, yes, I am a Christian, but I'm not perfect. There are times when I get mad, ask why, and even question God's way of answering my prayers...Life's not always peachy although I might do a good job at making it look that way. But I do have my moments where I just break down. I often think about all the things I miss about my mom. Or for that matter all the things that she is missing here. Kannon's birthday was probably one of my most bittersweet moments. It was all I could do to not think about it during his party. But at night when everyone is sleeping it is easy to become so brittle. Wondering if she really got to see him dig into his cake too. And how we were all so excited about the digging in the cake part, that we ALMOST forgot to sing happy birthday to him (yeah, that actually happened)! But in the morning, it's a blessing. It's an amazing feeling to wake up to the most precious son and loving husband that a girl could ever ask for. That when in a world full of let downs; we were able to live another day. It is that feeling that keeps me going, that keeps me grounded, keeps me hoping, and that keeps me praying. It is my daily reminder that God is there and guiding me through these difficult days. So that being said. We are sitting in the hospital for the 4th time in a little over one week. The first visit (Saturday) we took him to the ER because he was running a 103 temp and throwing up out of absolutely no where at his Scentsy donation party. They did some tests and let us go. Two days later (Monday) we got the results and they said he had Adenovirus. They blew it off like it wasn't too big of a deal since most kids will fight it off. Well, that landed us back in the ER on the next day (Tuesday). Which they ended up admitting him because he was still getting sick, and wasn't eating, and he was dehydrated. Kannon was in the hospital until Thursday afternoon we were finally discharged (JUST IN TIME TO CELEBRATE THE BIG O-N-E)! Then, on Friday (Kannon's birthday), he began having seizures....he has always had seizures (they have never been "controlled") but this time he was doing something different. These were a lot longer than normal, and he was actually seizing with repetitive convulsions. We have never seen him do this before, which as you can imagine this would do to any mom, it scared me to death. I called his Neurologist's office and they said to call an ambulance. So as much as we didn't want to go back to the hospital...we called. When they arrived, and walked in the door, Kannon began having another seizure. Eventually it seemed as though the seizures started getting a lot closer together. He was seizing for almost the whole way to the hospital. Not much was done while we were there. They increased his medicine and sent us on our way...Saturday (although Kannon's new seizures still continued to occur) we celebrated his birthday party which was John Deere themed :) It was SOO much fun, and it was really great to get to see everyone! Sunday (still having seizures) we slept in FINALLY and that was the best feeling ever. The three of us snuggled all day long. So here we are on Monday and Kannon is still having seizures. At one point he had about seven in an hour period. So I called the neurologist's office again just to let them know that these new seizures are still happening and they don't seem to be decreasing at all. The secretary talks to the neurologist and then gives us a call back and next thing I know we are being told the they have a room ready for him and he needs to get to the 10th floor ASAP.

PART 2: APRIL 15TH

So, to pick up where I left off from part 1. When we got settled into the hospital, Kannon was started on new and stronger seizure medications by IV. At this point, if you can picture in your head, Kannon's little veins are for the most part picked over considering this is his (I lost count) but maybe 4th or 5th time back in the hospital. When it comes to Kannon's chubby arms and delicate body, it seems it always takes AT LEAST two times before they actually get in the vein and that doesn't even count if they blow the vein later when trying to start the IV. BUT this trip, we finally got someone who got the vein the first time...and guess where it was at? THE THUMB. A thumb vein, really? I know the hand is common, but a thumb vein AND on Kannon! Wow. This lady was seriously a pro when in came to starting IV's. But anyways, after that we got to talk to his neurologist and she basically told us that Kannon's body is just laughing at us with all the medications we have tried and zero have worked. So she gave us two options of meds to consider. One being Phenobarbital and the other Depakote. After trying so many medications and being very anxious to get our son's seizures controlled, there is only ONE thing that you have to ask. What's the downfall to both? That's how we choose now. Phenobarbital we were told is heavily sedating (even more than the other seizure meds) and is usually given to kids in the NICU because they sleep a lot anyway. However she did say that it works well with the ketogenic diet, which Kannon starts in May. The Depakote was the risky one. The Dr. said she typically doesn't give this medicine to children under that age of 2 due to the possibility of mitochondrial disease. Usually we don't know until the age of 2 if kids have mitochondrial disease, however they could go through a lot of tests that is really long and includes genetics and muscle biopsies, etc. to see if they do. But she said for Kannon we don't have that kind of time, and we need to move quick, and all that testing would delay the process...so what we would do is have Kannon brought in every 2 weeks to have his liver checked and blood work done to make sure he wasn't having liver failure. Our instant reaction was, thanks but no thanks. So we chose to do the Phenobarbital, but since

1.) it was going to sedate him even further

2.) he was already losing weight because he was sick

3.) the medicine he was on before made him so tired that we struggled to get him to stay awake and eat enough AND

4. all the choking, all the time.

.....so we made the only logical decision to put in a g-tube. It was a decision we all struggled with for a LOOOONG time. But we did it. I am glad that we did, because he is able to get his nutrition and be a healthy baby and pack on the pounds now! Plus, he doesn't have to taste that gross medicine anymore. After a week of being in the hospital we were finally sent home. However, in some aspect it is back to square one for us. We started noticing Kannon's progress developmentally taking drastic steps backward. I called the Dr. today to let her know that he is still having seizures, but the main reason I called was to ask if having these episodes, especially the ones he had on his birthday, if they could be making him lose milestones. And what a heartbreaking answer I got...."it is typical for them to do that and it could take months for them to pick them back up again."After all of the seizures and the trauma it did to his little body we are now working with him several times throughout the day on learning to eat through his mouth again and the "suck, swallow, breath" that he learned while in the NICU. How to grasp onto our fingers, or to lift his arms and how to kick his legs....all things he knew how to do once before but are now having to be taught to him again. I want him to be able to eat real food one day, and be able to try what ice cream tastes like or even pizza. I want him to have a favorite food that his momma makes...so now more than ever we are realizing not to take the little things for granted. To work with Kannon everyday, multiple times, and teaching him muscle memory. The best thing about it is, I know God doesn't give us what we can't handle....and with that being said....God knows Kannon's a fighter. We'll be okay.

Kannon invite

Camo Command Chocolate Birthday Invitation

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Kannon Stands

Walk in Love

Love is my favorite word. And with it being February, what better time is there to think about the true meaning of love? They say love is an intangible object, but as for me, I think you can touch, see, feel, hear, and taste love. But the ultimate love for me, is the love I have for my family. With that love I can accomplish things I didn't think I could. It's the love between my family that keeps me going, keeps me strong, and that keeps me focused. In this roller coaster we call "Life" I believe it is impossible to make it without Love. It has been difficult this last year to get through some of the things God has thrown our way, but I know we couldn't have made it without the love we all had for each other. When we were weak, someone was there to carry the burden. Whether it was family, friends, or even a complete stranger---we walked in love together. In the Bible, God's command is that we walk in love. To walk by faith, and not by sight. So that's what we do. Everyone always says "I don't know how you guys do it"....We love that everyone is so encouraging and willing to give us that credit, but to be 100% honest here---it isn't us. We get through things because we have put our trust in God that he will guide us to do the right things, make the right decisions, and to protect us along the way. We get through it by having all of the love and support from everyone else. So with that being said, we extend a HUGE thanks for the prayers and support from our family, our friends, and even strangers who have just "heard it through the grapevine". It amazes us how fast Kannon's story has spread, and those willing to be there, and to help us through it. Just the other day I had someone come up to me in the grocery store, they didn't know who I was, but recognized Kannon in his stroller....and they told us that they have been praying for him. It really just helps us to be stronger in tough situations knowing there are people all around who are praying and thinking about our family. So with that being said, I will begin the update on Kannon.

First off (I might have mentioned this before), Kannon is on his oxygen and pulse ox at night. He is doing really well with it so far. We have an appointment this week with his ENT to see why he is having that "airway obstruction". They are thinking it might be due to his adenoids or tonsils, but they are going to check that out on Thursday.

We did get his 48 hr EEG (the test done in Tulsa) results back. We met with Dr. Norman to discuss treatment plans. She told us that Kannon is having generalized seizures (which occur in the whole brain) AND he is having focal spot seizures (which occur in a specific spot of the brain, his being in the back left part of the cerebrum). We asked what that meant and she said that since he has both types it is called mixed epilepsy and it makes it harder to treat. Kannon is on Topamax and Clonazepam (seizure medications) right now. So far it is decreasing his seizures, but not stopping them completely. He is likely to develop a tolerance (no effects) to the Clonazepam, and it eventually will lead to trying something new. The first thing she mentioned was surgery (down the road & a VERY last resort), but he would have to be assessed first to see if he was a good surgery candidate. In her opinion, she didn't think he would be a good candidate because he is having the mixed epilepsy which requires more than one surgery. Second, we could do VNS (vagus nerve stimulation) therapy. This is a type of treatment where short bursts of electrical energy are directed into the brain by way of the vagus nerve (a nerve in the neck) every few minutes. This is surgically implanted under the skin, usually on the chest. Third, we could do what they call a "ketogenic diet". This is a very high in fat, low carb diet used to treat epilepsy in children. I know it sounds weird, but we have heard from other parents with kids who have Kannon's brain abnormality, and some swear by it. Basically, (got this from Wikipedia, they can explain it better than what I can):

"The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fueling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known asketosis, leads to a reduction in the frequency of epileptic seizures."

The only thing is, they require that Kannon be monitored 4 days in the hospital to make sure his body is tolerating the new diet. We went ahead and chose this option, because it was the only one without the word surgery. Also, epilepsy is considered as being "resistive to treat" after 3 anticonvulsant medications have been tried and failed. Kannon is on his 4th anticonvulsant medication now. So his chances with treating his epilepsy with medications is slim. They don't do the ketogenic diet in any hospitals in Oklahoma, so we will be heading to Texas sometime in the summer (when they were able to schedule us).

As for the MRI results on his brain: They saw the Partial Agenesis of the Corpus Callosum (this doesn't ever change, or get better, it is something Kannon will have forever), he is missing the posterior part, called the splenium. His third, fourth and lateral ventricles in his brain are enlarged. His cerebral aqueduct is enlarged. He has cavum septum pellucidum et vergae. He also has vermian hypoplasia.---All of this they already thought they saw in his first MRI (at birth), but now it has officially been confirmed. He will need a follow up MRI eventually to check on other things they "think" might be going on ( such as dysmyelination & an absent pituitary bright spot).

The MRI on his Spinal Cord looked great! The only thing visualized was the scoliosis!

As for Kannon's scoliosis, we FINALLY got a script to get him a brace. All together now--YAY!!! Last week we had to put our boxing gloves on...BUT we got the job done and on March 1st he will get fitted for his new back brace! WOO-HOO!!

Kannon is doing soooo good! He is still having his therapy twice a week. This will eventually become three--(hopefully!) with the help from a physical therapist from the Spine Center in OK. We are excited to begin that type of therapy! Kannon has started oral stimulation practice, to help him learn to swallow and stuff. Baby food is very different, and he isn't sure what to think about it. We do know for a fact that sweet potatoes aren't his food of choice! Ha Ha...For those who don't already know, Kannon is able to hold his head up on his own! No help! He can't hold it for very long, but he is getting so strong---he will be soon!!! :) He also has become quite "the laugher". Although, he doesn't think his mommy and daddy are near as funny as the ceiling fan, but whatever works for him is fine with us! Kannon got measured up for his special chair today, it is called the Sting Ray. He also got fitted for a bath seat too--which is called the Manatee....HA HA...we are hoping that his stander is called The Shark! We aren't sure when these items will come in, but the equipment lady told us that sometimes it will take up to 4-6 weeks. BUT we do ask to continue keeping our family in your prayers. They're working :) We have come so, so, SO far---Kannon is almost 1 now! (WOW! Time can fly!) and we are ready for this new chapter in his life to begin! We are just a walkin' in love :)