The battle before us

In August of this year Lauren endured her first week long EMU (Epilepsy Monitoring Unit) stay. During her stay there she was hooked up to an EEG machine that would record non-stop any and all seizure activity. She was also being monitored via a video feed so her team of specialist can see how her body reacts to every seizure. Throughout her week there she had several blood test done as well as another MRI and a MEG scan. Every test was preformed for several reasons, 1, to figure out exactly where her seizures began in her brain and where they spread to, 2, to find any abnormalities in the development of her brain, and 3rd to see if she would be a candidate for surgery.

This past weekend Lauren, my mom and I traveled yet again to Houston to meet with her specialist and go over all her results from her EMU stay. I was aware of many things already but what would come next left me crying and shaking. 

All of her test have come back showing that her seizures are only coming from one location in her brain, her right temporal lobe. Knowing where they come from is not only helpful to her team but is also making very clear the daily life struggles she endures. Your right temporal lobe controls your short term memory as well as other things and from the struggles I see in learning and the results of her being below average in memory (yes she had a test for this as well) I'm now starting to understand why it takes her longer to learn things. Her EEG readings showed more than we were aware of. When Lauren first began having seizures she was having Tonic-Clonic seizures, she than began experiencing Simple Partial seizures. Her EEG results show she is having multiple Simple Partial seizures a day and more often then not they are going unnoticed by us. These type of seizures are very problematic because we can't tell how many she is having, how long they are lasting, or how often they are coming. The longer these type of seizures go uncontrolled the worse her memory will get. Her medicines are currently controlling her Simple Partial seizures from erupting into Tonic-Clonic seizures but they aren't controlling her Simple Partial seizures.

Not being able to see her Simple Partial seizures has left me with a rising hope that maybe one day she would grow out of her Epilepsy like many children do. With every passing month that went by where she didn't have a Tonic-Clonic my hope kept rising and so did the hope of those around us. That hope was lost when I was told that because of where her seizures are coming from the likelihood of her every growing out of Epilepsy is slim to none. Hearing this brought tears to my eyes and left me shaking.

From this point the findings continued to get harder to hear. When we began this journey of Epilepsy we never expected to have to start considering brain surgery, but that is exactly where we are. The blessing is because her seizures are only coming from one area of her brain and it happens to be the best part of the brain she is indeed a strong candidate for surgery, and it's the option her specialist is moving towards and wants us to openly consider. This news is a blessing for many parents whose children have uncontrolled seizures, however it was heart breaking, and gut wrenching news for Ed and I. We never once thought we would be left in the position of having to decide to allow a portion of our 5 year old brain to be removed. This is not an easy decision for us and it's not one we are rushing into. 

Lauren will under go more testing to gather as much information about her seizures as we can. All her tests will then be given to the surgical team for review. Her specialists said the sooner we have the surgery the better a chance we have at saving Lauren's memory, and the longer her Simple Partial seizures go uncontrolled the worse her memory will get and eventually her brain can shut down in that area.

I know if you aren't a caretaker of someone with Epilepsy or if you don't have Epilepsy yourself or have never witnessed someone having a seizure you may not understand why this news was so hard to hear, but I ask you to put yourself in my shoes for a moment and really think how you would feel, react to enduring all we have with your child and to now have to consider brain surgery.

We ask that you please pray for our family, for Lauren and her team of specialists as we move forward on this crazy journey.

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.