Friday, July 24, 2015

 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!

Thursday, July 23, 2015

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. 

Friday, July 17, 2015

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!

Sunday, July 12, 2015

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.