Thursday, May 22, 2014

Deep Brain Stimulation:: Going Deep

Here's the skinny on what's going to happen very soon in regard to the treatment of my Epilepsy. 

If you're just catching up here's a quick run through of where we've been:: 

*Diagnosed with Epilepsy at age 6

*Controlled and treated with medication until age 13.

*Taken off meds at age 13 with the assumption that I had Juvenile Myoclonic Epilepsy. You can read more about that Here if you are interested in understanding the condition further.

*Between the ages of 13-15 I started to become more 'aware' of my body and realized that something was wrong-I was still having seizures. By the time I was 15 I would go in spurts where I might have 5-6 seizures a day. The type of seizure I have can be described Here.

*At age 17 I went through a re-diagnosis process and was then put back on medication to control my seizures.

*I was controlled and treated with medication from age 17 until late April 2012 when pregnancy hormones started to kick in full swing and I started experiencing an increase in auras. 

*All was going relatively well (with a few random weird seizures mixed in) until February 2013 when I had a Grand Mal. Then another Grand Mal in April 2013. I was put on a 2nd anti-epileptic medication and so far this medication has kept me from having any more Grand Mal seizures! :D 

*I continue to struggle with my partial complex seizures monthly. On average, I might have anywhere from  5-10 seizures a month it just varies. 
Then we went to Cleveland… 

*On April 9, 2014 I had surgery at the University Hospital Cleveland to place 20 depth electrodes. Once surgery was complete I also had surface electrodes placed and was monitored for 2 weeks to collect data on my seizure activity to understand exactly where in my brain they are coming from and how best to move forward with treatment. During this testing I was also tested with electrical stimulation to see if I might possibly respond well to a Deep Brain Stimulator… Sounds well, bionic?  
I did really well during the testing- enough for the Dr.'s, JW and me to believe that this could be the right treatment for me. 
:D You can read more about the particulars of DBS Here. 

SO… on June 2nd I am going back to Cleveland to have the DBS implanted! We got the FDA go ahead for me because they definitely want more people to have the stimulator for Epilepsy because the more people that get it, the more data they can collect on how it works for those with Epilepsy. We are very comfortable with this option because the surgery itself is less invasive than what I've already had done and having the device is completely reversible-unlike some other surgical treatments for Epilepsy. 

This may be the piece of the puzzle we've been waiting for in my Epilepsy journey but I want to say that even if this device works for me and I never have another seizure I will still think of my self as an Epileptic because it is part of how I've been created-and there was a beautiful plan in that. Throughout all of the turmoil and frustration of this-I can be thankful for it. My journey has brought me to so many places of learning new things about myself and God. He is powerful and His plan is good; we have nothing to fear when we place our lives under his care.  

 Thank you again for all your prayers and support! JW, Anders & Joline and I are so so thankful for it. We have been enveloped in such great love for these past few years-It's overwhelming. 

Blessings friends, 

*OK I have to add something to this post because I'm getting a lot of questions due to a recent procedure done at our local hospital Spectrum Health Grand Rapids, MI. Maybe you saw the paper this week and read this story? Indeed, Spectrum Health is one of 10 hospitals approved by the FDA to implant a new device that also gives stimulation to the brain called the RNS device. Here's how FDA approval works both for this device and for the DBS, which I am getting: 

- A device is approved for "implantation" by the FDA and the approval goes to a select # of hospitals or Dr.'s who have worked closely to create, prepare, and investigate the ins and outs of the particular device. In the case of the RNS there are 10 hospitals approved to implant. 
I am not certain of the exact number of hospitals who are approved to implant the DBS.

- When a person gets a device that is only FDA approved for implantation, the device is still under the "test" phase and all of the people who have the device will have their results recorded to prove to the FDA and the team of creators whether or not it should be given formal FDA approval to be used in mass for everyone with a particular diagnosis. 

- Once a device is given the formal FDA approval, Dr.'s everywhere will be trained how to implant these devices and patients will not have to go to just the small group of hospitals approved at first for implant because all hospitals will be allowed to implant at that point if they have the correct training and tools. 

SO the questions I've been getting most are what is the difference between the two and why can't I have the one they implant at Spectrum Health? 

-First, the RNS device is implanted directly in the brain and is focused on one specific location. The DBS is implanted in the chest (like a pacemaker) with wires under the skin that run up into both my right and left temporal lobes to stimulate simultaneously. 

-Second, the RNS is a reactive device that only stimulates once it detects seizure activity. The DBS stimulates continuously to stop seizure activity and the level of electrical stimulation can be adjusted if the patient's Neurologist feels he or she needs more to stop seizures from starting. 

-Finally, I am not sure about RNS but I know that with the DBS it is completely reversible. Because it is something that is NOT implanted directly in the brain it is a very non-invasive surgery and if after some time the team of Neurologists does not feel it is improving the patient's situation the DBS can be completely removed without having to undergo major brain operations. 

I hope this clears up some of your questions and helps to give you a new understanding of the awesome technology that our medical teams are coming up with to help us-not just in the field of Epilepsy but in so many fields. Great technology is being advanced and improving people's lives every day and it is certainly something I am thankful for! 

Monday, May 12, 2014

Facade Remodel

This is fantastic. We have been enjoying absolutely every moment possible around here with the beautiful days we've been having lately. So much to tell you about…Where to begin?!

Well, for starters, we're taking on a home project around here! :D We live in a log cabin but the logs on the outside are 27 years old now and some of them are rotting and in addition we've decided that the upkeep to re-staining + chinking is a bit too much of an undertaking for us so we are going to have the house sided and the wrap around porch will get new posts and railings to go with the new style. Some have asked how we can go about doing this to a log cabin and the answer is simple in our case because our outer logs are just half-logs that can be pulled right off just like siding. Yay!

Sorry, I don't have a "before" picture yet. I need to get on that for you so you can see the difference when it's done.

We would like to have the house still look cabin-ish but without the logs. My goal in this is to modernize the look as well as decreasing the care we will need to put into it to keep it looking great for a long long time to come. Here is my "idea board" for what I would like to see happen. :D

Rustic Exterior by Crosslake General Contractors Lands End Development - Designers & Builders

Ok, so this was my inspiration to go off of. Our house colors will be different but we are going to use the 3 elements of siding that this house has: board and batten, lap, and shake. Also, we will also have similar log accents in the peaks of our roof as well. Since we already have some there to begin with we are going to add some more to create that 'craftsmen' look. Notice the patio? We are tearing off our back deck that leads to our back door because it is rotten too and instead of putting on another deck we are going to put in a pretty patio with some kind of slab entry to the door since it is off the ground a little. Something like this…

Rustic Entry by North Oaks Kitchen & Bath Designers nancekivell home planning & design

Eventually, JW and I plan to do something similar to the stone accents on the wrap around porch posts to complete the look but we may have to wait a year or so until we can save up for it.

The plan is for the builders to start their work in July and we are thankful that we could find someone to do it that quickly because we really did not want to be getting into fall with our project since that would occupy canning/freezing/holidays/hunting season. ;D

Here are some quick pics for you of what we've been doing lately…

They had a Peacock! :D 
Tulip Time in Holland with Nana

Painting with Aunt Abby for a Mother's Day Craft
Working with Daddy in the Yard. 

Cousin Love at Grandpa Scheuneman's 75th B-Day party! 
Finding Morel Mushrooms in our yard on Mother's Day!

So There you have it. I should have a quick brain update for you in a day or so.


Thursday, May 01, 2014

Spring Update!

Happy May 1st! 

It's not been the most beautiful week as far as weather goes but I am happy that we can say May nonetheless. Something has got to give because this has been a year for the record books in the area of cold/wet/snow/clouds since about November of last year and May sounds a lot like summer to me! :D

It's probably not a surprise to you by now based on some of my posts but I definitely deal with seasonal depression. I have since high school and it has not let up at all in my later years. I'm not ashamed of that and I don't see any point in hiding that fact. It's something I need to work through every year and work with God on to get me through the rough months. This year was exceptionally hard and the Lord was exceptionally gracious to me in helping me get through the rough months with grace. Having twin 1 year olds, not being able to drive, and being trapped by the relentless snow and bitter cold temps in the house was excruciating emotionally on certain days but the things that helped the most were staying in the Bible and letting the truth fill my brain, my husband's constant encouragement, my family's relentless help with getting me 'out and about' and our fantastic nanny and my friend Esther who helped me in more ways than just watching our kids or driving me to the grocery store. God has blessed me with all of these things through the rough winter and here we are on the other side of it now rejoicing with thankful hearts. I know that winter is necessary for our farmers in Michigan and I am thankful for what it does for our earth-albeit it's kick to my emotions is tough-I really wouldn't want to live in a warmer state at this stage of life though. Call me crazy. :D

So Here's to spring! We got a couple of pictures with the Winell family before I got my "haircut" ;) and they're finally here so enjoy these shots by our friend Jenny Osbeck. You can find her on Facebook by searching Jennifer Grace Photography.

Grandpa Jim and sweet Zuri

The fab 4! ;)

Dan, Abby and their amazing kiddos Fitz and Zuri

JW and Big A 

Me and miss Joline who was NOT happy about pictures that day! I think she was upset about her hair  accessory too! lol 

Jim and Sandy, Aren't they so cute! 

Grandma and Anders! 
So on a totally different note I need to drop a line for you all to check out my sister's blog because she's doing some pretty cool things over there. The Raw House Project was started when my sister and her husband bought a 1940's home with acreage and decided to completely gut it and remodel to make it their home. They have been living with my parents for a year now while they remodel and they are getting so close to move in and the blog is getting pretty exciting watching it all come together. In addition she has added a new section to the blog HOUSE CRASHERS! Yay! Once a month she is going to spotlight someone else's remodel/update/redecorate project on her blog to give all of us who crave those kinds of ideas something new to read. It's fantastic and she kicked it off today with a Nursery for friends of ours who just welcomed their new addition! Holly and Corey Osbeck. :D So head over to the blog and enjoy all the remodel ideas!

Spring Blessings Friends,