We were able to escape our daily routine for a few nights over Labor Day weekend. We journeyed up to Breezy Point. 

Despite Jonah's seizures, I think we all had a really good time. Between the beach, pool, kiddie pool, waterpark, and  jacuzzi we went swimming ALOT!  

Here's a couple photos of our stay:

I didn't really get a ton of photos. I was trying limit my screening. :)

I think there's one thing harder than seeing Jonah have seizures every day is watching him have virtually no seizures for 2 days then have seizures creep back in to the point where they are all the time again. 

Monday and Tuesday were amazing days for Jonah. He woke up Monday with no seizures. He wasn't in a fog, he would look around and not stare, he could go on car rides and not and have seizures, no drooling, no falling, no raising his his hands involuntary to name a few. Then, Wednesday came and the seizures started creeping back. Now today, Thursday, he is back to his baseline which is in and out all day. I just don't get why he can have a couple good days like that out of the blue. Their are so many things it could have been. Was it way more activity and less calories?  Maybe delayed response to last weeks IVIG? High ketones? Low ketones? Less sneaking? CBD kicking in? God giving us a glimpse of our Jonah? Who knows. 

This is a pic from one of those good days!

Jonah is stil having loads of seizures everyday. Today he actually had a pretty good day but otherwise if you count every myoclonic seizure he has close to 100 of which maybe 20 are actually counted as bigger or longer ones. 

We had to miss out on our church family camp, Camp L!ve, this year. This is the first year since they started it that we weren't part of it. We showed up Monday night but Jonah was having so many seizures we had to go. We always look forward to camp so that was kind of a bummer. Here's a link to one of the first if not the first Quarry family camp, http://kittelson-burke6.blogspot.com/2009/08/camp-qfm.html?m=1 and http://kittelson-burke6.blogspot.com/2010/08/camp-qfm-2010.html?m=1. 

Our family had a great extended weekend with dad. He was able to take off a half day on Thursday and the entire day on Friday. Friday we ended up going down to the Waterpark of America. I think everyone had a great time! At one point I had to give Jonah his rescue meds because he wasn't coming out of an absent seizure. Afterwards we headed to the Raddison Blu for dinner as we thought we had a gift card only to find out after that the gift card wouldn't work at that location. 

I think we are close to having our old house rented starting in September. We have narrowed it down to 2 parties. Woo Hoo after August no more double mortgage payments. 

Oh yeah and we sold Bruce today. :( We will greatly miss you. 

Camp the first night before we had to leave. 

 Jonah officially started the CBD study today. This was an ECG at his initial appointment. The first 28 days are only recording seizures. The drug or placebo will be given in 28 days. After that we will need to drive to Rochester every 2 weeks for check ups for the next 3 months. He was a trooper, yesterday he had IVIG and today this. Thanks for your continued thoughts and prayers. Jonah as still been having many seizures every day but is enjoying summer to the fullest!

We are at Children's Hospital now while Jonah gets his IVIG infusion. He is still having a lot of seizures. Tomorrow we head down to the Mayo Clinic in Rochester to get things rolling with the CBD trial he will be on. 

  

My baby is 3 today! Oh how time has gone so fast. He is still at that age of of pure joy. He is still a sweet little boy who loves life, loves hanging out with us and his siblings, obeys the rules, doesn't talk back, still gives hugs and kisses..

I love you Ethan Babies!

Jonah had the strangest week. The beginning of last week he was still having 20-60 seizures everyday. It got to be kind of a normal thing for him as that had been going on for over a month.  We were giving him rescue meds on average of once per day. Then, come Wednesday he was completely seizure free during the day. CRAZY! He would still have a couple in his sleep but NOTHING during the day on Wednesday, Thursday, Friday, Saturday and today up until about 20 minutes ago. He just had 3 tonic clonic seizures in a row while awake. He hasn't had a tonic clonic seizure while awake in a couple years. He is sleeping peacefully now! Hopefully, that was just a hiccup because he didn't eat all of his food today and had his afternoon meds late. Please join us in praying that tonic clonic seizures won't be the new normal and he will have a seizure free days again this week.