Wednesday, May 27, 2015

Jonah has been having increased tonic seizures which cause him to stiffen and fall over. He definitely needs a helmet right now. We are still waiting for the CBD study to start so we cannot make any medication changes at this point. I have been giving him rescue meds on average once per day these past few days. 

Saturday, May 23, 2015

Things are going pretty good. We closed on the house May 15. We really just started moving this weekend. It's kinda crazy moving 8 people when it's the first time we have moved in 8 years. 

Jonah had been doing very bad for awhile, then he was doing awesome, now he's back to about average as far as seizures. 

Here are some pictures to capture our life recently: 

Vanessa gets her own room!
Can't believe she's 10!
He's not very happy. I have to take pics when I can at this age.
Best friends! And brothers. 
James, 7, in the big trailer. 
Hanging with big brothers.
Tractor ride!
Power Wheels.
Finally, getting his cast off. 

Monday, May 11, 2015

Just a quick update:
Jonah has a bad cough which is causing lots of seizures and non convulsive status events where he needs rescue meds to come out of. Please keep him in your prayers. Thanks! 

Friday, May 1, 2015

We just got back from another doctor appointment with Jonah. We took him in to a get checked out after his recent fall. It turns out he broke his clavicle or collarbone. He has been in a lot of pain and is not suppose to use his arm. He is suppose to wear a sling in addition to his cast until we go back in on May 18.

Jonah is a very tough young man...Dad, not so much...

Get up at 5:40AM
Head to work at 6:30AM
Get there at 6:55AM
Work until 10:30AM, then head home
Get home at 11:00AM
Eat lunch with other kids (Subway)
Leave to IVIg in Plymouth for 1st time at Plymouth location: 11:35AM
Get there at 12:20PM
IVIg starts at 1:35PM
IVIg ends at 5:30PM
Heading home with a boy that did great
Get home at 6:20PM
Feed Jonah his Yogurt, Bacon, Heavy-Whipping Cream with Coconut bites at 6:30PM
Hanging out with Jonah playing video games, he loves Mario for the WII U
Getting restless so Jonah springs up and runs outside, I go for a cookie so I don't have to eat it in front of him
I watch as he blazes a path outside just past the garage where I lose sight of him and expect him to be in the front yard shortly
I scarf down the cookie, and wait for him to run around the corner...
I wait...
He doesn't run around the corner...
I retraced his path that he was so quick to set out on and I find him...
Just beyond where I lost sight of him around the corner of the garage...
I find him on the ground, face down having a seizure, through the seizure he is crying...
I feel horrible...
I pick him up and hug him...
He continues to cry and have a seizure in my arms...
I move him from the ground into the living room where I snuggle him some more, he is still crying...
Kristi gets home at 7:45PM and he is still having a hard time, thankfully he isn't having a seizure anymore
I start to think that something else is going on and I inspect his back and shoulder area to find his right collar bone doesn't look right...
I feel like poo for not being able to be there for him when he needed me...

This is not uncommon, just uncommon for me, as I don't get to hang out with him most of the time as I am at work away from the house.

So from this usually unaffected dad that seemingly can bear most anything, this seems to have really effected me, sorry, I thought some might want insight as to what some days are like for me.