Saturday, April 25, 2015

Vanessa had a very fun birthday last night. I'm so thankful that everything worked out. The night started out terrible because Jonah went into another stupid seizure mode that he wouldn't come out of right around the time we were suppose to leave for the birthday party. I was so upset at the fact that he has uncontrolled seizures. Justin left to pick up the girls and I stayed back with Jonah and Ethan. I ended up giving Jonah emergency meds again($60 each time) and thank you Jesus he came out of the seizure. So, we headed down to Cheapskate to celebrate Vanessa. 

Vanessa had a very fun time at Cheapskate. It was really nice to do something where she is in the spotlight. A lot of times it is Jonah because he has special needs or Ethan cause he is the baby. She had 9 friends join us. 

Wednesday, April 22, 2015

Jonah has been doing pretty good with his cast on. He can't really do much because it covers part of his hand. One of the things he really misses doing is playing Mario. We go in to see the orthopedic doctor tomorrow morning

As far as his seizures, he has been pretty stable. 2 days ago he went into a non convulsive seizure for a long time that he wouldn't come out of so rescue meds were needed. Yesterday, he didn't have any seizures all day! Then, last night or I guess early this morning he had 2 separate tonic clonic seizures(grand mal) in his sleep. 

Sunday, April 19, 2015

Our Mayo trip last Thursday went as expected. At the time he was only having about 1-2 seizures per day. We found out more info on the up coming CBD trail. Jonah's doctor thinks he will be a good candidate and it will probably roll out in about 4-6 weeks. 

The night after the Mayo visit he had 4 tonic seizures and 2 tonic clonic(grand mal) seizures in his sleep. We were a little bummed about that. Yesterday, he broke his arm. He was in quite a bit of pain yesterday but today he is feeling much better today. He can use his hand but is not suppose to move his arm if possible. The cast is expected to be in for 3 weeks. We will know more when we have a follow up visit in 3 days. 
After he got on the cast
At the Mayo

Wednesday, April 15, 2015

Jonah has been doing SO much better this past week and a half. He is still having daily seizures but not the 100's he was having a few weeks ago. Throughout the last 3 years that he has been battling intractable seizures it has been quite a roller coaster ride. Sometimes, he will experience 100's or seizures in one day for a stretch then all of a sudden he will have no seizures except for during the night. We are just so thankful that he is doing so well right now. My prayer is that it stays that way for a long time.

We head back down to the Mayo tomorrow for a full day of appointments. I will try to post an update on how that went when I can. 

On a side note, Jonah has been a little bummed because his bicycle was stolen from our lawn. The only one really to blame is me though for not putting it away at night. I guess I know what to get him for his birthday this June. 

Saturday, April 11, 2015

Vanessa, our one and only girl is now double digits!
 It seems like she was just a baby. She is becoming a beautiful young lady, on the inside and out. Thank you Jesus for giving us the perfect girl for our family!


Saturday, April 4, 2015

This past week Jonah has had a pretty rough time. Lots of going on and out of seizures. He seems to be almost back to his baseline which is still a handful of seizures a day. Today, I have recorded 6. If you don't know what to look for the average person wouldn't catch a lot of his seizures. Sometimes he just has a quick jerk or minor facial twitching which can easily go unnoticed. I have been in contact with his dietitian and we are changing a few things up in his diet that will hopefully help his seizure control. 
One of Jonah's meals. 10g bread, 12g pickle, 27g tuna,16g mayo,19g raspberries,12g coconut oil, 2g zero carb syrup and 23g heavy whiping cream
Jonah pretending to ride the Doodle Bug.