I'm Jonah's seizure pattern is SO crazy. I just don't get why some days he has 6 and another day only 1. It just doesn't make since. I've done my best to track his seizures over the last month. I know for a fact that I have not recorded all of them but it ends out being an average of about 3.57 seizures every day, 25 seizures a week, 100 seizures a month and if the seizure counts stayed the same, 1,200 every year. Although you wouldn't know it. You wouldn't know it unless you are with him for an extended amount of time. At the park or riding his bike around he looks like any other 4 year old boy. Most of his seizures, thank you Jesus, are in a safe place, usually inside. He seems to know when one is coming for the most part. He seems to get down on the couch or floor when he has them.  

Last week we received some great news. After nearly one whole year of battling our insurance company to pay for Jonah's vital IVIG a treatments the 4th appeal, thanks to his doctor, has been won! It truly is an answer to prayer. Although that was the biggest expense for Jonah's care we still have many, many hospital bills and other expenses. Not to mention this is something Jonah will most likely have for a long time. His seizures are SO unpredictable one day will have 1-2 and then the next day 6-8 then even other times he will be in the hospital in a seizure state. It has been on my mind a lot lately to help others in need who have the same kind of thing as Jonah. I know there are foundations out there but they seem to be way behind in helping those in need. One in particular has a waiting list of 17 bed monitors for families in need. I would love to help other families as well. I know many of you have been so kind as to donate to Jonah and our family. We are so thankful for that!  The Raising Hope for Jonah team feels there is still a big need for the fundraiser and is currently working on an updated flyer. It's time to celebrate!

-Kristi 

James lost his first tooth. Losing your first tooth is a BIG deal around here. 

 2 years ago today marks the day that Jonah had his first seizure. I remember it like it was yesterday. I can't believe it's been 2 years. I remember thinking he had tripped on a slipper, hit his head and as a result had a seizure. It was SO crazy. Then, almost 2 weeks later he had another seizure. Shortly after that is when we knew he had epilepsy but little did we know it would be such a nightmare. At first we thought it was just a common juvenile case of epilepsy that he would most likely grow out in 2 years. But then the drops stared and the myoclonic jerks and facial seizures and absent seizures and the list goes on. 

I'm so thankful that we found a wonderful doctor down at the Mayo Clinic. Although what Jonah has is a rare kind of epilepsy they seem to very knowledgable about what he has. 

Thank you EVERYONE for the outpouring of love you have shown our family as we walk thorough this battle with Jonah. 

One thing I have been thinking about lately is that the biggest thing that Jonah needs is Jesus' healing hand. Not the money to pay for bills or great doctors or supportive friends and family. Don't get me wrong those are SUPER important but what he needs, as a friend pointed out, is Jesus' healing hand. 

The seizures have been creeping back in these past few days including a short tonic clonic in his sleep this morning. Justin and Jonah will be going back down the the Mayo today for an IVIG treatment. We are so thankful the infusions are helping. I just wish the benefits would last a bit longer. It seems like it works great for about a week and then the seizures creep back in. It would also be nice in insurance would step in and pay for them. 

We have heard back from Justin's work and they have reviewed the case and have told us that they will not be paying for it because our insurance company states that it is an experimental form of treatment. 

Here's a couple more Valentine pictures: 

Projectors are so much fun! Jonah is playing Mario on Ethan

James with his Wedget creation. 

Jonah has had a good run these past few days only having 1-3 seizures each day. We are down from 3-8 each day. Keep the prayer coming!

Justin, Tyler and Shane are on their way home from a Regional Pokemon turnament in Missouri this weekend. Tyler made it to day 2 which was only for the top 32 players. Day 2 he didn't make it to the final cut but he won prizes, championship points and bragging rights!  

Friday night, Vanessa and I had a girls night out! Thank you grandma for watching the boys. 

Saturday we headed down to my mom's church for a Valentine carnival. My kids look forward to this all year. 

Jonah seems to be sleeping peacefully. He was in a pretty much constant seizure mode till he finally fell asleep. I believe the plan is that Justin will be taking him in to the Mayo Clinic for at least an IVIG infusion tomorrow morning. Unless of course something happens yet tonight and we need to take him to the ER as directed by his doctor. 

Here's him a couple days ago playing games on the "big" screen: