2015 Christmas season part 1
Tuesday, November 10, 2015
*Written November 10
Daddy KB here. I just wanted to post about how things have been since Jonah was admitted to St. Mary's Hospital down in Rochester due to him have an adverse reaction to the Medical Marijuana (CBD) that he started on almost 2 months ago after we waited so long to get him on it.
We went down to his Monday morning usually Pediatric Neurologist appointment expecting to hear that we just need to hold on until the "Open Label" study starts then we'll know for sure if he will be on the active drug, CBD and that we we're almost certain would help him.
Monday morning: That usual appointment was anything but, his doctor said in a sobering statement that was hard to hear, "I took an oath to help, and I feel that I am not doing that allowing him to remain on the study", that lead to some quick action on her part to get my approval to pull him from the study as I was hoping she would intervene and do something as Jonah was to the point of drooling all the time, falling over often, not able to hold his head up, not able to talk, having multiple seizures after multiple seizures and on and on and on it went for about 3 weeks. You wouldn't have been able to recognize him if you would have visited, you would have thought that he was near needing a wheel chair, or at the least needing to wear his helmet full time.
Action plan: Remove Jonah from the CBD trail, find out if he was on the active drug or not, give full 5 day course of Steroids, remove Depakote pharma drug slowly over the next month, come back to check on progress in 2 weeks, then again in 4 weeks, continue with IVIg at Children's Hospital MPLS, and most of all hold on for things to change for the better.
Results: after the 3rd day of steroids he started to talk a little, he would look over and he would say so much more with his eyes, by the 4th day we arranged to make a plan of action, we'd ween him off the Depakote over the next month, we'd continue with the Ketogenic Diet he has been on and continue with IVIg down at Children's, and continue to pray for him, pray for God to show us our son again.
After we left the hospital that Thursday, I think it was September 24th, we ventured back to Monticello, back to normalcy, we thought of getting Jonah back to his old baseline of having 12-15 seizures a day or more depending on the day, to getting to have the best month since this all started as his last "regular" seizure was October 4th, depending on who you ask Kristi or me, and since then the 4 or 5 seizures that he has had, I attribute to weening him off a very powerful pharmaceutical drug, Depakote.
Prayers have been answered, he has been a bundle of joy, he has been smiling so much!
Tuesday, October 13, 2015
Friday, October 2, 2015
Thursday, October 1, 2015
Jonah did have a FANTASTIC 5 day run! Unfortunately, the seizures came rolling back in today. He probably had at least 10. The New drug, Banzel, has been doubled over the last 2 days. Maybe that has something to do with the increase of seizures. Maybe it's the wean of the Depakote. Could it be that he's getting into carbs again? Or maybe that the steroids are wearing off? Who knows.
It was such a relief to see him doing so well. I was able to let my guard down a little. This has been such a roller coaster.
Monday, September 28, 2015
Jonah has been doing FANTASTIC during the day! The steroids have really helped keep the daytime seizures at bay. Unfortunately, each early morning Jonah will have 1-2 tonic clonic (grand mal) seizures that last at least 10 minutes. :( I am praying those will not continue as I wouldn't want to have to start, Onfi, a new and stronger medication for that since he's having such good days. The night seizures are the biggest risk for SUDEP(sudden unexplained death in epilepsy) which is a real risk for someone like Jonah.
Tuesday, September 22, 2015
We are back in the hospital with Jonah. He has been having a lot of non convulsive status elipepticus which are basically very long seizures.
His doctor pulled him off the MMJ study as it was not helping and probably making things worse. After pulling him off we all found out he was indeed on the real drug not the placebo. I was really hoping that the MMJ was going to be his magic bullet. Now we are back to more drugs.
So far he is 2 days into a 5 day round of IV steroids and a new medication called Banzel. So far, neither seem to be helping. Basically, we will keep giving him new medications each one getting a little stronger or with more possible side effects until we find one that works.
Sunday, September 13, 2015
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 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.
Saturday, August 1, 2015
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.
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
Friday, July 17, 2015
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.
Tuesday, June 30, 2015
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.
As many of you know we have moved. We felt that it was the right time to make some changes and moving out of out previous house was one of them.
We made it happen by dipping into Justin's 401K. I know that is not the best thing to do but we felt it was the right thing for us.
We found this house in Monticello that I would say is not too big and not too small but just the right size for our family. It's an older home built in 1977 but we love it!
We are trying to rent or sell our previous house if anyone knows of anyone looking to rent or buy a 4 bedroom/2 bath house in Monticello.
Enjoy some pics of the new place:
Eating strawberries from the strawberry patch