Vanessa looks forward to this every year. She starts asking about it around Halloween. Here are this year's face paintings:
Wednesday, February 26, 2014
His cold seems to be getting better, yesterday, he only had 3 recorded! I hope today he will the same or less.
We are counting down the days until we get on a plane to Florida.10 more days until Vanessa, James, Ethan and myself join my Mom, Pat, Michael and Erika on a plane for an 8 day vacation to Florida to celebrate my brother graduating law school and my sister graduating from college.
I am so thankful for my husband, Justin, to gift us this amazing trip. He has offered to stay back and watch Jonah, Tyler and Shane. It would be nice if we could ALL go, but it's just simply way too expensive. We cannot all afford to go.:(
Please join us in praying that Jonah will have a good week and not have many seizures while we are away and be okay with me gone for so long. Justin has the okay from work to work from home that week which is huge. So, Tyler and Shane will be watching Jonah while Justin is working downstairs.
Vanessa is so excited for this trip. Really everyone is. My heart is a little heavy because I am scared to leave Jonah for so long but I know he is in good hands. It may look a little selfish that I am leaving. I feel that way sometimes. I need time to be able to be with some of my other children that need me to spend time with them also. I will miss Tyler, Shane, Jonah and Justin very much. I'm in this cycle everyday stressed and following Jonah in hope that he won't fall over and if he does he won't get hurt.
Friday, February 21, 2014
It almost seems like the diet has been ineffective the last couple of weeks. Jonah has been having more random out of nowhere drops lately.
His neurologist suggested to increase his calories 5%. He has enjoyed getting bigger snacks but I'm not sure it has helped any. We have also added an additional half pill of Keppra with his night dose. That hasn't really seemed to help either.
Today is the 9th day of the calories adjustment and the 5th day of the added Keppra.
2/2 8 Seizures
2/5 5 (cookie amount figured out)
2/7 4 (first day with complete 5% increase)
2/10 3 (1 was a TC )
2/11 3 (1st night or added Keppra)
2/17 1 so far
This is not including any activity right after he falls asleep but that has been pretty minimal lately. It's like one seizure type or time of day increases and other types decrease.
Around the time we were last in the hospital which was January 6 he was only really having anything upon falling asleep or while sleeping. Although that was not good, for us it was ok because he was always in a safe place, in bed. Now, he will be playing and all of a sudden drop down out if nowhere and hit face in his knee or the floor. It's pretty scary. Even if you are right by him you cannot predict when it might happen to catch him.
One thing we have realized is that when he is fussing, upset or crying he needs to be in a safe place because that is a huge trigger.
I've heard a lot about blood ketone monitoring and glucose monitoring. I did mention the blood ketone reading the his doctor when we were in the hospital and she didn't seem to think that was necessary that it would be the same thing only a couple hours later or something.
I'm so thankful that he is not fearful of having a drop. Here is a video of a random drop: