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. 

We head back down to the Mayo Clinic tomorrow for a full day of appointments. I will post how things go. Please join us in praying for the day tomorrow. Thank you.

Jonah and his banana chocolate muffins 

 

Happy Birthday Vanessa Rose!

My Vanessa is 9 today!  It's amazing to think that she once was a little girl.  Where does the time go?  It's very challenging to have a daughter, I can totally get my boys and why they do things and play the games they play.  My daughter has kept me up at night, just watching her as she slept, praying that God would protect her and to encourage her as she needs it, and to allow me to be the best dad for her.  She is such a blessing.  I remember the summer's when I came home from work on a hot day and she would wait for me to come home and I could barely get out of the car and she would be hugging me.  She just wants to be loved and cared for, and to hear that I love her.  Now she can not only hear it, feel it and know it, she can read it, I love you Vanessa.

Nothing much going on around the KB house.

Jonah had a GREAT day with NO seizures. (that I saw anyway) It always seems like when he has seizure free days there is always a TC lurking around the corner every time he has a good thing going. 

We had a snowstorm Thursday night. Go figure....right after all the snow melted. 

Justin and the big boys are in Kansas for a regional Pokemon tournament this weekend. I don't think any of them made top cut this time. It will be nice to have them back. 

Vanessa is spending the night at her second cousins. She was super excited to go. 

I can't believe my Vanessa will be 9 next week. Where did the time go? 

My Evening

5:45 Had spicy Chinese food.

6:15 Brought kids to Awana.

6:35 At Awana, Jonah had a tonic clonic seizure in the van. *Thankfully, a friend was right there to help out.

7:00 Home from Awana. Let Jonah hang out/rest on the van while watching Diego on the van video player.

7:03 James ran inside the house before us to open a new angry bird blanket and proceeded to cut his finger with a knife. (It wasn't too bad but there was blood)

7:40 Got Ethan and James back in the van along with Jonah to go pick up Vanessa from Awana. 

7:41 Realized that my van battery was dead from letting Jonah sit in the van and watch a movie for the last 40 minutes. 

7:42 Called the same friend that helped out at Awana to see if he could pick up Vanessa because my car was dead. (She is now sleeping at there house tonight)

8:00 Made Jonah his snack of a cookie and canned pineapple that I had just opened. (He helped weigh it) 

8:10 Had to go to the bathroom so bad from the spicy Chinese food that I left rest of the whole can of pineapple on the counter. Was in the bathroom for awhile. 

8:15 Right when I came out of the bathroom Jonah told me with a big smile that he ate 7 pineapples. Ahhhh, yes the whole can was empty, juice and all. His snack consist if 21g of pineapple which is about a half of one ring and he just pretty much ate over half of the whole can. That will definitely break him out of ketosis for the night. 

9:00 building a fort with Jonah!

10:10 Justin home from an awesome youth group in  Princeton. 

10:20 Ketones completely negative, I wonder why....all the pineapple.

10:30 Right after making my bed which consists of 4 blankets, someone comes in and takes them all off. 

10:40 Making my bed, again.

11:00 Ethan sleeping ✔️, James sleeping ✔️, Tyler sleeping✔️, Shane sleeping ✔️, Justin sleeping ✔️, Jonah not sleeping yet, although he's in bed. It could be all the sugar could it? 

11:30 one mama wishing she was sleeping. Good night.