Friday, December 26, 2014

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.

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. 

Thursday, December 18, 2014

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.

Sunday, December 14, 2014

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.  

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.