We had a glimpse of hope today with Jonah. Although nowhere near the Jonah we know and can't wait to have back.

Jonah talked to us today. Jonah smiled at us today. Jonah was able to eat some of his food. 

His doctor surprised us today with a visit. It's pretty rare for a doctor to show up at the hospital on a Sunday morning just to see Jonah. 

We met with her to go over the game plan. Although his non convulsive status seizures were not damaging to him the doctor want to be more aggressive with getting him out of it. He had been in an almost constant seizure mode since he woke up Friday morning. 

We started in on the plan and by tripling

the dose of the new medication. That didn't really do much. So we went on to the next thing which was to increase his old medication by tripling  the dose he was getting. That is when he started talking a little and becoming more aware I his surroundings. He is still not anywhere near his baseline it was so good to hear his sweet voice. 

Jonah is still having seizures so the next step is to have a meeting tomorrow with his doctor and her team and discuss giving him IVIG or steroids. 

Not much has changed today for Jonah. His language skills have actually gotten worse. I don't think he said more than a handful of slurred words if that. At one time tonight  it seamed as if he was trying to talk but couldn't. It is so sad to see him like this. The doctor was here till 10pm tonight monitoring and working on Jonah's case. For anyone new here Jonah has a very rare form of epilepsy called Doose Syndrome. I'm very tired and it's  12:30am so I'm going to make this one really short.

Kristi

When we arrived at the Mayo they gave Jonah a different kind of rescue med to try to break him from having seizures. That didn't really work. That was on top of the rescue med we had already given him at home that also didn't work.

Next they gave him a big IV dose of Depakote which is a pretty heavy anti seizure drug. They have given him Depakote 3 times so far. He slept peacefully for awhile. When we woke up he started having seizures again. He talks very little and just kinda lays around. He played the iPad for awhile which was nice to see.  I guess we will be here until at the minimum, Sunday. 

As for Vanessa, I think she's starting to feel better. 

Kristi

Vanessa

Please keep our daughter in your thoughts and prayers. She has been having bad stomach pain for the last few days. She has been in bed and is not been eating. I am going to try to get her in to see the doctor today and will pot an update later. Thanks.

At 5am this morning Jonah woke up having 2 quick tonic clonic seizures. I feel like we are losing are boy to seizures. :( :(

Kristi

Update

A lot has happened since my last post. Jonah seems to have taken a turn for the worse. Almost daily he has been going into non-conclusive status epilepticus. Which is basically him having on and off seizures that last for hours looping in and out of seizures. We need to break the cycle by giving him a dose of rescue meds which puts him in a drunk state for an hour or so then back to normal. The more we give him the rescue meds the greater chance it will become less effective or he will become dependent on it to break seizures. Today he actually had what we believe to be 2 of them. Thankfully, he fell asleep early and is still resting peacefully. We are only allowed to give him rescue meds twice per day and no sooner than 12 hours in between. So, I was feeling a little nervous before he fell asleep. 

Another thing that has been going on is that Jonah has been having increased tonic clonic aka grand mal seizures. Today he had 3. 

We have been talking to the nurse/doctor at the Mayo and try would like to see him in the monitoring unit tomorrow. We are not sure if they can get us in yet until tomorrow morning.  

Thanks for your continued prayers support!

Kristi 

Today during one of his seizures

Jonah eating his snack yesterday 

 Shane's soccer game Tuesday night 

Quick update

Sorry it has been so long since an update. I have so much to share. I only have a minute so I will share today's events. The morning started with Jonah waking up about 7:30am and going right into a seizure state. He would go in and out of it so I wasn't sure if I was suppose to give him his emergency meds or not. So Justin ended coming home from work early at about 12:30. It was very stressful. It was his first non-convulsive status epilepticus which is basically a prolonged seizure or cluster of seizures. His went on from 7:30am to 2:30pm.

We had increased his meds 5 days before which i think caused this. We have decreased the meds since then. 

We have hired this diet specialist. She seems great! We start new meals soon.  

Kristi

I am having a garage sale this Friday and Saturday as it Monticello city wide garage sale day on Saturday.

I am having a sale to raise money to hire a ketogenic diet specialist to look at Jonah's case.  The cost is $250 so it shouldn't be too hard with a decent sale. (If anyone in my area has anything to donate to a good cause, bring it over or we will come pick it up and put it in the sale😀)

For those I you who do not already know the ketogenic diet is the front line treatment for kids with intractable seizures. The diet has had a positive impact to decrease the amount of seizures. Unfortunately, he is still having anywhere from 4-9 drop seizures everyday. I believe by hiring this specialist I can at least say I've done everything I can do with the diet before we start adding additional medication. One more thing people often have questions on, if  we are aware of CBD treatment for seizures and will be looking more seriously into that option as soon as it gets passed here.

-Kristi

*I apologize for not posting an update on our most recent Mayo visit. It's hard to find time use the computer. When I create a post from my phone with the blogger app, I find that
it always ends up with way too many typos and errors.