Jeremiah 29:11 is a popular and often quoted bible verse : 11″ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

It has been a favorite of mine for many years, not just standing on it’s own but in the greater story of scripture. It is God’s promise to fully redeem his people, it is told to them in the middle of a terrible circumstances and scripture records that God does ultimately fully save and redeem. It became especially significant yesterday when Chuck came home and reported something really awesome!  Below I have copied and pasted Chuck’s Facebook post to one of our Ketogentic Diet groups.

I just had an amazing God experience. In addition to being a Doose Dad, I teach at the University of Kansas. One of the classes I teach is in the Leadership Studies Minor. The LSM is a group of the best and brightest from across campus, all kids who are very involved on campus and who have stellar grades. Of those we have a select group who we have in an independent study, in essence the best of the best and brightest. So, yesterday I was meeting with them going over some projects we had coming up and one girl asked if we needed a baby sitter, I said yes but our son has severe epilepsy just so she would be aware. All 4 kids said they either had epilepsy or had at least one seizure. Two of the kids had severe epilepsy, one Juvenile myoclonic – she is on Keppra, the other, Danny Sanchez, had the same thing Gabriel has. 18 years ago after 14 drugs his mom took him to a then experimental trial at Johns Hopkins for the Keto Diet. Below I link to some news stories about Danny and his mom.

I was having a hard time not breaking down knowing that this kid who was at one point having more than 100 seizures a day was not not only in college but thriving. I know it doesn’t mean that Gabriel will be able to go to college etc, but It was a powerful glimpse of hope for me.

Also, while we struggle constantly to stay up with the demands of the Diet.  Danny’s mom was doing it back in the day before computers allowed for quick calculations of precise gram measurements, and dieticians were available down the street not across the country.  All Keto Parents deserve some sort of Saint Hood, if I do say so myself lol, but Danny’s mom all the more so.

AMAZING! Thank you God for this conversation and putting these students in Chuck’s life at the right time, to have the right conversation. Not to get too theological but I believe sometimes God orchestras things perfectly for us (I don’t know or understand why everyone moment isn’t that way…maybe we just need to watch closer for His presence in our lives, I don’t know).  Beyond just the seizures Gabriel has A LOT to overcome physically and developmentally. What hope it gives us to hear of a bright college student who has overcome the same thing our little guy is fighting right now! We especially loved that this young man reported having NO memory of being on the diet! So amazing to think the burden and pain of this time will not be Gabriel’s to bear at all  🙂

Another bible verse about Hope that I love is Romans 5:5

^“and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us”

Danny Sanchez Story Link 1
Danny Sanchez Story Link 2

We received some very encouraging news from the results of Gabriel’s genetic tests. He does not have the genetic indicator that means he will have this exact form of doose his entire life (scn1a or sociium channel- for people who like to research and learn about the technical stuff). Long story short the odds of him having stay on the ketogentic diet his entire life are very slim! Yippee! Very encouraging for the long run.

I am sure we will learn more at our appointment in September. We were able to get this information when Chuck called to get the billing figured out. (For regular readers, it looks like we will not have to pay for the genetic testing…the insurance company just needs more thorough explanation of why it was necessary for us).

We had made it 8 days seizure free when he had one in the middle of the night Wednesday. 8 days is a record since the diet, so we are counting that as a victory. We think the seizure may have happened because I had a hard time getting him to take his medicine last night and he spit most of it back out. In those cases we are supposed to redose. We think the combination of too much of one of the meds, paired with a late dinner caused the seizure last night. As always….total bummer that we had a seizure, but nice that we seem to be able to trace the causes better.

The seizure free count begins again this today….maybe we can hit 9 days this time :).