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. 

A couple of Jonah's meals:

Tuna sandwich(27 tuna 16 Hellmann's Mayo) with pickles, cream mixed with diet root beer and frozen coconut oil. 

Spaghetti and meatballs meal. Made with Walden Farms pasta sauce(carb free), miracle noodles, 2g butter and ground beef. This meal is missing 12g coconut oil, 58 grams of cream and 37g raspberries. 400 calories

Summer FUN:

Hanging with friends 

Riding bikes 

Climbing trees

Fireworks

Snuggles

Blonde hair