For those of you following for updates on Jonah here is the latest..

Jonah has been primarily seizure free during the day. He will have occasional tonic or absent during the daytime. Unfortunately, his nighttime tonic-clonics(grand-mal) have increased at night. He had one in his sleep on Christmas Eve and Christmas.  Hopefully this is not a new pattern. 

We found a lot of mold downstairs in our laundry room from a plumbing leak. Hopefully it will be easy to take care of. I have heard of seizure related symptoms from mold but I don't think that's what is causing Jonah to have seizures. 

Recently, Jonah's story had some media attention. Justin was interviewed on WCCO news in a follow up they did on the Quarry $100 giveaway. http://minnesota.cbslocal.com/2014/12/24/monticello-church-shares-how-its-100-pay-it-forward-challenge-went/

Jonah loves to make things with food even though he knows he can't eat it. 

He also loves taking baths. Although he has to be monitored closely incase he has a seizure in the water which he has had more than once. 

Gillespie family Christmas pic. 

People ask how's it going...Sometimes I'd like to ask someone that has gone before me, does it get easier?

I know this is primarily a blog for Jonah and my wife, Kristi normally is the author.  I thought I would give a bit of insight into a different perspective.

Enter Justin K-B, father, husband, friend, "computer guy", sometimes competitive(ok almost always), playful, serious and most always real.

Since you can read and probably have seen the many posts about Jonah I won't go into detail, much.

Here is a day, I get up at 5:40AM, shower, get dressed, grab my stuff and I'm out the door most days by 6:15AM to get to work by 7AM at Great River Energy as a Senior Support Analyst (computer guy.)  I go through the day pretty much detached from what is going on at home as to try to keep my head in the game, and most days I am very good at this.  I call it compartmentalizing my life, but then there are days that things just spill over into other compartments and things seem to get a bit messy those days.

So I was saying after getting to work, I keep doing what I do until someone inevitably asks how it's going, which I really appreciate and welcome, however I'd sometimes like to ask what level of detail they would really like to know about in regards to how it is going.

Little detail: it's going, I am working on projects and working tickets (computer issues) and pretty much staying in the here and now, not really talking about family or life outside of work.

A little more detail: it's going, last night Jonah had a grand-mal seizure at 4:45AM, it was a morning like other mornings where that is how I wake up for the day, I pray for God to allow him to come out of the seizure and protect his body and brain while he is seizing and then he comes out of it, and things seem to return to normal.

Much more detail: it's going great.  I've been thinking about a couple things though, like medicinal marijuana and if the trail that Jonah will be part of will have the impact I am hoping for.  I've also been thinking about how I can stay on top of things like taking my wife out on occasion as it's so easy to just focus on Jonah and forgetting about my marriage.  I know that I need to continue to bless my wife with love and caring and so on, however sometimes it seems like it's impossible to do as I struggle with being the best advocate for Jonah and getting him the best treatment possible.  I read things that wish I didn't want to read so I can find out more about what exactly is going on and what percentage chance Jonah has to beat this thing, and then I find a blog that talks about a boy that is also 4 and has something similar to what Jonah has and that boy started on medical marijuana and has been seizure free for 4 months.  Switch gears, I wish that BlueCross BlueSheild would stop the bullshit and just pay for the IVIg treatment that is enabling us to have Jonah for the most part a normal boy that happens to have seizures daily.  What I really mean to say is that without IVIg (the treatment that BCBS continues to not pay for) things would look so different for Jonah and for my family as he would not be able to do the many things he is able to do. Switching gears again, my oldest son Tyler has been slacking a bit on his school work and he and I went to the Monticello Community Center this previous Monday night right after I got home from work and worked through as much school work as possible before we got kicked out by some angry janitor.  He is such a smart young man, and I think he needs time away, time with his dad to ask questions that a young man can't ask his mom.  So I sat with him and helped him through 1.5 assignments and we shared laughs and dialog that I would have missed had I not made it a point to connect with him on a different level other than how was school today or what did you do today kind of thing.

So as you can see it can get pretty deep without even trying as being a dad is HARD.  Being a husband is HARD.  Being a friend is HARD.  Sometimes I just want a break, but then I think of Jonah and he doesn't get a break, he fights everyday.

I wish I had a friend that would call me just to ask how's it going that has been through what I am going through, so I can ask them if it gets easier?  Does it ever get to the point where you can sleep through the night without fear of waking up to your son having a grand-mal siezure in their sleep?  Do you ever go to the park or on a bike ride without worrying about if your son has a seizure while riding the bike or playing at the park and seriously injuring himself?

Since I tend to try to grasp just what we are up against I dig for statistical info knowing that we need to be the exception to them as it is much more likely for a marriage to end in divorce if there is a child with disabilities involved, although this statistic is probably not taking into account for families that center their marriage in Christ.  I tend to look at the quality of life question a lot as we could probably get the seizures to stop with loads of meds but that would turn him into a boy that doesn't talk much, a boy that just sits on the couch and doesn't do a whole lot and we don't want that for him.

So I say to myself often, be the leader you want your kids to be.  I need to stay positive not just for me, but for my kids, so they see that what Jonah is going through isn't going to define us and it isn't going to control what we are all about, we have hope, we have Jesus.

I want to share a pretty cool story:

I got an erroneous text message while at work November 26th at 12:31PM that said,
"You should check your mailbox in Maple Grove."
I replied,
"Who is this?"
They replied,
"A friend of a friend ??"
I replied,
"Oh ok"
Long story short, we went to the Grinch at the Children's Theatre Company in Minneapolis and on the way back I stopped at my Maple Grove office and checked my mailbox to find an envelope.  I brought it out to the vehicle and my wife opened it, to find this...

There was $1000 enclosed, I wrote a response to that text number that came out of the blue...
John 15:13
Greater love has no one than this: to lay down one's life for one's friends.

We have much to be thankful for, Jonah is making progress, he is learning and growing and our other kids are possibly missing out on other things but they are getting what life is really about, love.

So here I find myself very satisfied with life despite our circumstances, hopeful in God's promise that He will be with us through whatever, He has gone before us, and to Him I ask my many questions, and He replies with the above stories from time to time.

I don't want to end this very long post without thanking all of the many people that pray for us, that cook Jonah meals, that donate to this blog or to the GiveForward fundraiser or the family members that just come over to watch kids or that take our kids so we can go out on occasion.

Thank you very much for coming along side my family and showing us love.

Justin K-B.

It seems these days I don't have a ton of time to post here. Every time I start writing I get Interrupted then when I come back to it things have changed so much that I need to start over. I used to have this blog as a way to look back at my family over the years and enjoys reading and scrolling through the pictures of my family history. Now, it seems like I just post a quick update on Jonah when I can. Which is still important but I do miss looking back on the whole family.

Here's my Jonah update the best as it can be because it will probably change tomorrow. Since the hospital we increased Depakote which seemed to do nothing. We increased the ratio of the diet which seemed to help decrease the intensity of the nightly tonic seizures most of the time. Also, he wasn't having any saying activity which again is fairly normal. The third change we have made is stretching IVIg treatment from every 2 weeks to every 3 weeks. I'm not sure if that has made a difference or not. 4AM this morning he had a small grand mal seizure and last night he had a tonic seizure followed by an absent seizure while he was awake. He also had a grand mal seizure Monday in his sleep. So is that from the increase length between infusions? I don't know. It is so hard to tell. I know Justin would say for sure it is.  

A FEW DAYS LATER:

Jonah was back down to the Mayo on Thursday for his infusion. He did great as usual. The day of his infusion he had a daytime tonic and absent. He's actually had a couple daytime seizures sprinkled here and there. After the IVIg infusion it can take a couple days for peek effectiveness.

*This is the update from Jonah's fundraiser. http://gfwd.at/1GpPneY

Jonah's 24hr EEG brought both good and bad news.

The good news is that only 3 seizures were picked up which is significantly better than back in June when it was 100's. That is even less than last January. In my opinion that is the ketogenic diet and IVIG (IVIG is what the insurance refuses to pay). Although he still has "slowing" in the background of his EEG monitoring which is not good, it has cleared up a lot since his last EEG. 

The bad news is that he is still having daily seizures. At least one tonic seizure which is a stiffening where his head is lifted some off the bed after he falls asleep. He will have a tonic clonic (grand mal) seizure  about once every 1.5 weeks. Praise God they are only at night. He has some other types once in awhile if he's upset or something but for the most part his daytime seizures are under control and hopefully will stay that way. 

His doctor has taken off the MAE diagnosis because at this point she is uncertain if his diagnosis falls into the MAE or LGS category (google them, you will get a ton of info)  Both are very similar forms of rare intractable epilepsy. Unfortunately, the one she's thinking he might have because of the tonics is LGS which is the worse of the two. LGS is usually not outgrown and can cause development delays where as MAE has an ok chance of being outgrown around 8-9. Both are suppose to be super responders to diet treatment so we will be trying to max that out before we go on to other medications. 

Thanks again for lifting us up in prayer and generously donating. Remember every donation will be equally matched up to $10,000. Money that is given personally or through Paypal will also be included in the match. 

So much has happened since my last post. I really don't know where to start. I think I'm going to try to summarize.

Jonah's doctor gave us a plan:
1. Increase Depakote to what is was in the hospital back in June. If that doesn't do anything then Depakote goes out the door. 

2. Maximize the diet. Bump up to a 2.5:1 which again is noticeably more fat and less carbs. If that does nothing, scale the ratio back down.

3. Add new medication from a different class of seizure meds. keep in mind though that once someone has failed 3 anti seizure meds the likely of one working is very slim. I really would not like to have to get to this point because hearing her list off the side effects were not fun. Some of the side effects she wrote down were sleepiness, unsteadiness, drooling(yes she actually wrote that). He would need to have an EKG first because these meds are alot stronger or could be hard on his heart or something.

4. Also the plan is to give IVIG every three weeks instead or every 2 weeks to see if on that third week makes any difference in seizure control. If not then after a few times at 3 weeks we would go down to 4 weeks and so on.

No, we have not heard back from Justin's work yet to see if they will make our insurance company pay for the IVIG. Our doctor is confident that she will be able to get it to go through with a peer to peer with the insurance company. So that was nice to hear.

She also mentioned that since he has so many tonic seizures (that's what he has most nights after falling asleep) that it can be a indicator that he has a more difficult case of Doose/MAE. You can imagine that put knots in my stomach right away.

As we were closing our meeting with his doctor Justin asked about medical marijuana or CBD treatments for epilepsy. She mentioned that they will be doing a CBD study at the Mayo I believe in early 2015. She said that Jonah would  meet the criteria for the study so she marked us down. We are not officially on it yet but we are on the list if that makes since. She also mentioned that for the study meds can't have changed for 30 days prior to the start of the study. So I don't know if that would change anything as far as, the plan. She also mentioned that when CBD becomes available next June/July it will be very expensive like $700-800 a month and insurance probably won't pay for it. So getting into the study would mean free for us for awhile even after the study.

I feel like a shlub for asking people to donate money to us. I am also very thankful for every dollar. I lay awake at night thinking about the cost of everything for Jonah. $15,000 sitting in collections from IVIG so far. $80 a month for his medications, $600 for a nighttime seizure monitor that will tell us if he is having a seizure at night, $100 to get to the Mayo a month, $317 co-pay for each hospital stay which the next one is coming up November 20, a ton of money for his dental bills which is due to the seizure medication effecting his gums/teeth and it seems like the list goes on. It just keeps turning and turning in my head. So, thank you for your donations, thy will go 100% to help my boy fight this hard to treat epilepsy.

I'm trying to figure out a fundraiser ideas or a silent action or something but I don't even know where to start.

*UPDATE: We are in phase 2 of the Depakote Carnitine increase. (sorry, I forgot to mention that his doctor increased his carnitine supplement my a 1/4 of a teaspoon, which is actually a lot) he actually has been having MORE daily seizures. I hate daytime seizures. Also, he has broken out in hives. I think the hives are from the increased carnitine but really I don't know they could be from the increased Depakote. I have no idea why the increased seizures. Justin thinks it's the Depakote. We did call the on call dr but them were no help. We will call his doctor on Monday. For instance today he had has at least 3 different seizures not including the regular ones he has while he's sleeping. If you add those it's at least 5 today. That is 5 too many.

Thanks again for all or your support. Prayers, funds, pizza...everything.

In case anyone would like it here is our donation page link: 

https://www.giveforward.com/fundraiser/yzb6/jonah-s-myoclonic-astatic-epilepsy-fundraiser?utm_campaign=update&utm_medium=email&utm_source=giveforward

We are back down at the Mayo and hospital again to meet with his doctors and so he can get his infusion.

Jonah has been doing fairly well. He's not seizure free but with Doose Syndrome his seizure control is great compared to what it could be and has been been. 

He still continues to have grand mal (tonic clonic) seizures in his sleep. He actually just had one this morning. :( He also is still having tonics nearly every time he falls asleep. These last couple weeks he has also had increased daytime activity. 

Jonah has been on the increased ratio now for over a month. We really haven't seen a lot of difference in seizure control with the increased ratio. We'll see what his doctor has to say about moving forward. 

If it is on your heart to help monetarily we have started an online fundraiser for Jonah to help cover his past and ongoing medical bills, medications, special equipment, dental work due to medications... 

http://www.giveforward.com/fundraisers?query=Jonah+Kittelson-burke or we can except donations through PayPal on this blog. He money goes directly into an account set up for Jonah and the expenses for his care.

As I was saying in my last post, it has been awhile since my update on Jonah. At one of the Mayo visits we met with Jonah's dietitian and neurologist. Like I said before they increased the fat to carb ratio to see if we could eliminate the nightly tonics he was having after falling asleep and the occasional tonic clonics he was having in the early morning in his sleep. I do believe that the increase has helped but not eliminated them. In the last month he has had 2 tonic clonic(grand mal) seizures in his sleep which isn't too bad but I would like him not have any. Actually, since I started writing this update a few day ago, Jonah had one drop in the bathtub followed by an absent and then 2 days later he had an absence while sitting on the couch. Hopefully those were just breakthrough seizures. IVIG is scheduled again for this Saturday.

As far as our insurance paying for IVIG we are still in that battle. They denied the Mayo's claim to which we were really hoping they wouldn't. I'm starting to brainstorm fundraiser ideas. If we had to pay out if pocket for Jonah's treatment plus all of his other bills the cost would be over $37000 a year.

Jonah

I know it's been awhile, sorry. Time has not been on my side.

I posted last a little over a month ago. Since then Jonah has been down to the Mayo twice and we have increased his ratio from 1.75:1 to 2:1. That doesn't seem like much but you can tell. He gets quite a bit less fruit and more heavy whipping cream. He seems to be tolerating it fine though. Thanks to Barb who is on top of making sure Jonah has a great variety of meals and makes them every week. Barb is always on the ketocaluculator making new meals or switching things up to make the meals more attractive to him. Thanks also to John and Susan who have bought themselves a scale and taken on the task to help with Jonah's food preparation. Thank you to my mother, Kathy who continues to come over 3 times every week to help out. Thank you to Margie and all who decorate brown lunch bags that Jonah's meals come in. Thank you Audra and Audra's whole Church body who continue to lift Jonah up in prayer and send words of encouragement. Thank you Katie who also is a prayer worrier for our Jonah and continues to send texts and words of encouragement to Jonah. Thank you to Bill and Kathy who barley know Jonah yet have keep donating financialy to Jonah's rising medical cost through Pay Pal which now have accumulated over 15K. I know I am missing so many people but thank you to every single one of you praying for Jonah and coming along side this journey of having a child with hard to treat, multiple types of seizures, aka Doose Syndrome. 

My firstborn is 16, Crazy

It seems like I have been so busy lately and time is just flying by that I haven't had a lot of time to sit and think about how I have been a mom now for almost 17 years. Wow! That's just crazy. 

I am so thankful that God have me Tyler for my firstborn. He is one amazing young adult. A true leader. 

I love you Tyler! I hope you had a great day.

Happy Birthday, Shane! 

13 years ago today, well on October 2, our second child took his first breath at Methodist Hospital in Saint Louis Park at 12:51am. Although we didn't know his name yet we were extremely happy that God gave him to us.  

What a joy it has been to watch Shane grow into a now teenager. 

Shane celebrated the day with grandpa Dan coming out with some birthday gifts. Then, grandma taking him to lunch. He got the day off of school to which he spent the rest of the day playing a new birthday game, Destiny. 

Jonah's appointment went pretty good today. We didn't get the ok to wean any pills right now which was kind of a bummer. Plus, they are increasing his ketogenic ratio so he will be getting even more heavy whipping cream with each meal. 

The infusion went pretty good. He had a couple tonics during it and actually two quick myos during his appointment (while awake) but over all he did great getting the IV in and what not. 

Tomorrow we head back down to the Mayo for Jonah's infusion and 2 appointments. His fist appointment is at 9am, so it will be a long day.

I'm am so thankful that he continues to not have any seizures while awake. IVIG has been amazingly effective. 

I guess the down side or whatever you call it is that he does continue to have daily seizures at night. Even if most of them are just quick tonics after falling asleep that can't be great for him. 

Jonah is such a trooper. Every day he swallows 17 rather large pills, drinks over 150g of heavy whipping cream, watches his siblings eat food that he cannot have, gets poked with a lancer and every two weeks sits perfectly still as an IV gets put into his arm so he can have his IVIG for 4 hours. I'd say that's pretty good for a 4 year old. 

Jonah takes these every day. We hope to start weaning the blue/white ones tomorrow.

18 days and counting of seizure free days while awake!! Thank you Jesus! He continues to have tonics after falling asleep and a couple nights ago he had a 1 minute tonic clonic in his sleep which is always scary. 

Once again Jonah went back down to the Mayo for his infusion this past Friday. This time around in between infusion days he was seizure free during the day for 10 days. Then, on Friday the day he had the infusion he had 2 tonic clonic seizures while sleeping during his infusion. I believe that it had nothing to do with the infusion itself. So, technically he hasn't had an awake seizure in 12 days since the TCs were in his sleep.

Our Labor Day weekend started out Friday night when our friends from Wisconsin came up for a visit. It has been really a treat because we only get to see these guys maybe once a year. 

Saturday afternoon we all climbed into, Bruce, our 15 passenger van along with 2 doodle bugs and headed to the beach which our friends Amanda and Lori let us use their jet ski and tube for a super fun day at the lake.

So, we went in for IVIG August 16 to which he was having a ton of seizures. By August 19 he has been seizure free again (except a quick tonic some nights after falling asleep) since. PRAISE GOD! I have no doubt in my mind that IVIG is very much so controlling Jonah's seizures.

It's really too bad that our insurance will not pay for this. We just found out that our third appeal was denied. They are considering it experimental. Jonah's doctor told us and even wrote us a letter to the insurance company that it is not experimental but I guess that didn't do the trick. So we may be having some sort of fundraiser sometime to raise money for Jonah's treatment. Every 2 weeks it is another $1600 added to the bill not to mention the $50 in has each time we journey down to the Mayo though. We are blessed though to live so close. Many people have to fly in and we can drive. 

Sometimes it's hard to not let Satan creep in and start telling his lies. Sometimes I think what is the point of praying that whatever is going to happen is going to happen no matter if I pray or not. Or, if I try to seek God's will or not that the outcome will be the same. I know that is not true but sometimes it's hard not to go there. 

Our Week:

We went down to the Mayo yesterday for Jonah's IVIG infusion. That's always a long day. We left at 11:30am and didn't get home until 9pm or so. Jonah had over 15 seizures today and about the same yesterday. 

Justin, Tyler and Shane are leaving this evening for the Pokemon World Championship in Washington DC. This should be an amazing trip for them.  

Jonah is still having daytime seizures and this morning in his sleep he had a tonic clonic lasting 6 min. He came out if it on his own. We go back down for IVIG in 2 days. I hope things will calm down after that. We don't go back I to see the doctor until September. So something is going to need to be done before that. My guess is Keppra levels are too low. With the seizures creeping back in it really is not safe for him to ride his 2 wheel bike which he loves to ride😞. Yesterday, he had a drop while riding it. Luckily he didn't get hurt or anything. But the reality is that we are back to wearing headbands and helmets which he does not like doing. 

We finally got the appeal in to our insurance company for the IVIG. They told us it could take up to 30 days to let us know if they will pay for IVIG or not. Hopefully they will . Then we won't have to go down the Mayo every 2 weeks. We will be able to get it done locally. 

Swimming fun

Vanessa's new haircut

Climbing the apple tree

Turtle the kids found in our yard 

More swimming fun

Dispite the seizures, the KBs have been having a great summer!!

Jonah has been having a few daytime seizures creeping in lately. A tonic clonic while awake this morning and a couple of I'm not really sure what kind. Could have been just absents or tonics followed by absents. Bummer. 

Jonah had a great day today. He had a seizure free day. That's leads me to believe that the IVIg that he had on Saturday is what is working. As it got closer to the infusion date is when he started having more seizure activity. Saturday he had a handful then yesterday, just a couple. I think it takes the IVIg a little while to kick in. The next step is getting the insurance to pay for it. 

Jonah had at least 4 drops yesterday during the day. He had a 5 minute tonic clonic (grand mal) in his sleep at 5am this morning. Since he's been up he's had 1 drop seizure and 2 tonic seizures. He is on his way down to the Mayo now for an IVIg infusion. Hopefully the infusion will help with the increased seizure activity. 

Kristi

Yesterday, which was Saturday, Jonah had at least 2-3 daytime seizures followed by an 8 minute tonic clonic(grand mal) shortly after falling asleep last night.😞 He went over a month with no daytime seizures. I really thought that was going to be the end of the drops but apparently I was wrong. I hope the seizures aren't creeping back in. It is common with Doose Syndrome to have honeymoon periods where their is little or no seizure activity then for some reason what ever was working fails an the seizures come back. I guess that's why they call it intractable seizures.

Jonah continues to have seizure free days!! Nights are about the same also with a quick tonic and once in awhile a tonic clonic closer to morning. We go back to the Mayo Clinic at the end of next week for a doctor visit and an IVIg infusion.

Justin has not been feeling not all that great lately. He has been having these dizzy spells which is his vertigo. Some other symptoms were going in so he decided that it was best to get things checked out. He went down to the urgent care and they had him go to the hospital ER for some tests. They did a whole bunch of tests including an EKG, MRI and blood work. So things are checking out good. This was all tonight. 

The hospital bills are finally rolling in from all the hospital/doctor visits Jonah has had. Over $2000 after insurance through June 17 already. 

Shane just finished a great week at British Soccer Camp. This was his third year. Every year he has so much fun and learns so much. 

Tyler has been preparing for the upcoming grinder(last chance qualifier)  for the World Pokemon competition this August. He will be competing with 500 people to try to get a spot at World's to which only 4 get in. Shane ha already been invited so he won't have to go through the grinder like Justin and Tyler. 

Vanessa is a social butterfly. She I always playing with her friends every chance she can get. I think she'd have sleepovers every night if she could. :)

James is loving everything about summer- bare feet, water fun, bike rides, Mario... James and Jonah are becoming great buddies!

Ethan is my glow. He is always bringing a smile to my face. He is at that super cute toddler stage. Goes by WAY too fast. :(

These are the guys I'm around most so I have the most pictures I them on my phone.

Kristi