Tuesday, February 22, 2011

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 :)