Tuesday, January 21, 2014

One Day At a Time

Yesterday the Kiddos and I began our day with a fantastic brunch date with cousins and Grandmas galore! It was a mess around here with foam letters flying everywhere and kids laughing and drooling all over the place and it was great!

I love it when we can start our day with friends it just seems to brighten the whole day no matter what the weather looks like outside. Which, for now, is still super cold for those not in our area who are wondering. :)

We have not been able to take the kids outside to play once this winter yet because we have not had a day where it has been warm enough. They both got sleds for Christmas and they just sit in the garage waiting to be used but it doesn't seem to be getting any warmer…yet. Maybe by springtime we will be able to just pull them around the yard in their sleds on the grass! ;) BUT hope is on the way because it's already Jan. 21 so I know that this month is almost done and Feb. is a short month and then March is usually only a half month for 'winter like' weather. Yay! We WILL SURVIVE! I admit I get so super down in the winter. I cannot stand the cold and the dark days and I love being outside so not being able to get out and about really affects my attitude and outlook on things.

This morning I decided that I need to start focusing on my attitude of thankfulness because I have been focused too much on what is bothering me about winter & not being able to get out. SO I decided to change it up a bit and instead of just jumping out of bed and letting the day start with a bang I got the kids out of bed and settled with their breakfast in their high chairs and then I grabbed my coffee and went to the couch. I looked out at a beautiful sunrise and birds eating their hearts out at my bird feeders and just enjoyed the sounds of my kiddos enjoying each others' company and I prayed. I prayed for friends, for my kids, for myself and for my husband. It was a much better way to start my day than the usual rocket propelled start to our day.
This picture was taken last year. I had the same view this morning minus the ice covered trees. Although we had those a couple of weeks ago! ;) So many Cardinals in our yard today! 

Are my kids any happier now than they usually are at this time of day? No. Are they still hungry and tired and have poopy diapers? Yes. But is my ability to breathe through it and remember that I have it good in a better perspective? Most definitely.

So while winter still rages around me it's my prayer that I can continue to do this thankfulness reminder and keep my eyes open to the fact that I've got it good.

Sometimes all of life feels like endless winter but God's gentle reminders and tugs at my heart are like the sunlight coming in to remind me that he will thaw things out in His time. Patience may not be my best virtue but it's one worth striving for.

Thursday, January 02, 2014

The 'Brains' Behind This Year...

Hehe… Ok So That title was a shameless pun! This post is going to fill you in on my brain and where we stand on my journey with Epilepsy.

While most bloggers are posting their 'year in review' posts I'm a non-traditionalist who didn't even watch the ball drop. I didn't see Ryan Seacrest gabbing it up with stars of all sorts, no champagne or goofy 2014 hats for this girl; no instead my hubby wanted a quiet night in and I happily agreed that a slower paced welcome to our new year would be just right.

We enjoyed the slower pace for a change because 2013 was all but slow in a lot of ways. It was a wild ride of ups and downs and we look forward to what 2014 will bring.

February will mark a year from my first Grand Mal seizure. Not my first seizure, just my first Grand Mal, and what seemed like a game changer for us. If you aren't familiar with my story here it is in a nut shell::

-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. 

-In July 2012 I had 2 seizures while on our family vacation that were completely different from any seizure I had ever had before. While they were still not of the Grand Mal scale they were different in the sense that I wasn't aware that I was having a seizure and I had no memory of the events that occured during. Normally I would be able to remember what was going on during my seizure even if I couldn't 'participate' and I don't ever loose consciousness. 

-As pregnancy progressed the seizures continued and became more frequent. I was being closely monitored by my Neurologist and the high risk OBGYN for the babies' safety. I delivered the babies at 36 weeks gestation and we were all hopeful that delivery would allow my body the chance to get back to 'normal' (whatever that is!) and stop having seizures. 

-All was going well until February 2013 when I had my 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 4-5 seizures a month. 

So that's where we've been and here's where we're going… 

After much discussion and prayer Jared and I decided to pursue further testing to see if I might be a candidate for brain surgery to remove the part of my brain that causes seizures. In order to do this I have to go through a lot of various tests to narrow down other possible reasons for seizures, other treatment options, and most of all I have to be a perfect 'candidate'. Meaning, I have to have seizures in just the right area of my brain where Dr.'s can go in and remove a tiny section of tissue without disturbing any other functions. In order to prove this I've already had a few tests done EEG scans, MRIs, and a PET scan. These tests have all pointed out that I have seizure activity on both the left and the right temporal lobes of my brain but the right side seems to be the trigger side. However, you can't do surgery on a guess SO my Dr. has sent in a referral to the University of Cleveland Hospital to see if they will accept me for invasive testing. You can read more about UH Cleveland and the diagnostics Here

If accepted, I will have to travel to Cleveland and stay there for at least 2 weeks while they place depth electrodes in my temporal lobes to monitor my seizure activity close up. The results of this testing will show us exactly where my seizures originate from and whether or not they are coming from the right temporal lobe and quickly traveling to the left side or if I actually have 2 active seizure causing lobes. If my seizures are only coming from the right I would be a candidate for surgery. If both sides are active then I am not a candidate. 

It isn't fun to think about leaving my babies for 2+ weeks or being sliced open and having to lay in a hospital bed while they induce seizures to get the data that they need. I don't WANT this, but right now it's what I need. I need to explore this option so that I know what the final answer is. I know that at the end of all of this I could go there and have the testing and they could still tell me that I can't have surgery but if that's the answer then that's what I need to hear so I can completely close that door and open the door to life WITH seizures. 

God tells us that we don't have to fear anything if we are his Child so I know that I don't have to fear invasive testing, Surgery, or a life living With seizures. None of these things defines who I am. Getting to that place of complete abandonment-where I forsake what I know in my head and trust God's Character and the promises he has for my life is not an easy road but I'm getting there and I'm thankful that He doesn't force me. He is a perfect gentleman and I'm so grateful for his care of me.  

Isaiah 41:10 
"So Do Not Fear, For I am with you; do not be dismayed for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."