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:

Please pray for Jonah. He has been in a seizure state almost ALL day and had a tonic clonic in his sleep this morning. Will update more tonight. Thanks!

Jonah has recovered from his illness and with that has not been having as many seizures!! He had IVIG on Friday which has helped. The bottom line is though he is still having daily seizures. I wish they would just go away. He has still been having 2-8 seizures every day. 

We finally got the okay to wean Depakote! It will be an eight week wean to which we are in week three of. That's kinda why he's having more than usual seizures lately I think. 

I spoke with a ketogenic diet specialist that we will be hiring to help tweak the diet to hopefully make the diet more effective. She seemed to have quite a few ideas. 

Look who's 7

James!! 

I can't believe James is 7. I wish I could slow down time. My babies are growing up way too fast. Sometimes is hard being the middle child but hopefully James knows that we love him just as much as we love all of our children. I hope you had a great birthday today, James. 

Again, I haven't posted in awhile. A lot has been going on actually in the last couple of days and weeks. 

In the last couple of days Jonah has taken a turn for the worse. His seizure activity has increased including some non convulsive status epilepticus which is basically a long seizure. The reason behind it I believe is illness. Ethan had been sick with a temperature and cold/cough. I think to some extent Jonah has picked it up which can cause increased seizure activity. I really hate seeing the long ones though. They are the same kind that he had back in June that put him in the hospital. Please be praying that they will not continue. 

Besides that he has been having increased seizures lately up to 5 per day. After IVIG he was seizure free for 5 days then he started gradually having them again including 2 tonic clonics(grand mals) in his sleep. Maybe because they are in a trail of extending IVIG to every three weeks vs every 2 weeks. 

I talked to his doctor which was really her nurse and she basically told me that we could wean Depakote, then increase ratio of fat if we want of his diet then if that doesn't do anything more to Benzel which is another line of seizure medications. Seems like that's what we talked about the last time we were in I don't know know why we are just carrying it out now. 

As far as IVIG she didn't say anything about changing that. Sometimes I wish I could have a conversation with his doctor and not just the nurse relaying the messages back and forth. We know it works great for the the first 4-5 days then he starts having seizures again.

 Not looking good here last night.

Last week smiles.