My update and My apologies

I have sadly had to step back in much of my reviewing in order to get my family through a very stressful year. The doctors started my son on testing for Epilepsy Surgery, we had no idea the roller coaster ride we were beginning with that appointment and the decision to see if our son was a candidate for surgery. Perhaps one can't prepare for these sorts of things and that is just the way it is. We began with the first test's. He had a PET, an MRI, a FMRI, 2 SPECS, a MEG which required another MRI a 3 channel one or something, he took tests with the Neuro-psychologist, who then ordered a WADA and of course he has had about a dozen EEG's and 100's of seizures while he was off his meds for 2 of our tests. This boy has been put through the ringer! We are now awaiting the surgical teams decision on if we go forward. Which means if he has surgery, it will be done in 2 parts, both requiring him to stay in the hospital during all of it (at the least 2 weeks), then home for recovery, we have been told to expect significant memory issues that could last up to 9 months after surgery! Which will prove a challenge for a 14 year old boy in 8th grade that is active and social. 

This is what my fall/winter looks like, so I post this here to let all authors, fellow bloggers, readers and anyone who follows me, that I am not gone, but I may not be reviewing as often as I have been known too until My boy is over his next hurdle in life. I ask for your amazing patience with me, any book I have committed to reading and reviewing, will get done. It just may not be as quickly as originally promised. Before I became a stressed out mom, I read a book a day...currently i have to fight to focus to read even one a week. So please please have patience and understanding with me. 

We are currently expecting a surgical date very near Christmas, which of course will alter things for our home as well. We hope that if he is to be at the hospital during the holiday we will be allowed to make it a very special day for him. He being my amazing trooper, shrugs his shoulder and says "it's ok mom, let's just get it done!"


Been quiet this week and I'm sorry for that, but today is an important day for me to post. Today is Epilepsy Awareness day and this hits close to my heart. So I want to share my story. Please feel free to share it. But more importantly please learn about this, you never know when it come into your life. You never know what a small bit of kindness to someone that has Epilepsy or one of the many other hidden condition. Please know that Epilepsy awareness and education is so so freaking important!
Did you know that there are several different types of seizures a person can have. Until my child started having these strange episodes I had no idea! In fact while the grand Mal is the most well known, the unseen seizure is far more common. And here is my boy's story for you.

10 years ago this very sweet and very lovable little boy began having episodes. These episodes started in his sleep. Often having dozens in a single 2 hour nap. Eventually they started coming during his waking hours. His eyes would glaze over, he would turn in circles always to the left, his eyes turning with his body and he would speak gibberish. Never remembering the episode afterwards only ever being able to tell me that he was in his "happy place".
These episodes would last less then 20 seconds but always felt much longer. Eventually my sweet boy would start moving distances when he would have them; near stairs, on his bike, in the bathtub, while excited watching a sparkler burn. Excitement, distress, upset, any emotion could spur and episode. I remember the most insane fear for this boy.
This is when we started the tests, the MRI's and EEG'S and blood work and of course the medications. Back then at 4 years old we were told we had a 70 percent chance that they would grow away with age. Today we have been given a single digit chance that he will stop having them, and a single digit chance that medication will control them completely. On a daily basis my boy takes 5 different medications to control his seizures and had recently committed to a slew of tests to see if brain surgery may be a viable option for us.

So you see here at my house Epilepsy Awareness is very important. When you hear my child has seizures, I don't want you to be scared to let him hang with your son, or worry that he will act weird and make you uncomfortable. I simply want you to see him for him. For in my house my son may have epilepsy, but epilepsy does not have him.
In the pictures below, is my son during his first EEG, a test he has to do 1-2 times a year, sometimes for 10 days at a time in the hospital. Then I also included a picture of him around the time the seizures started. As his mom, I see the distress in his beautiful brown eyes. Today he is far more carefree after many years of not letting his condition become him. He is truly my hero in how he shows me on a daily basis that he is not epilepsy.

Terry's Thoughts

Launching my Blog page. Very new to me, although I have always been know as one to write my thoughts out. I have always felt that writing things out allows me to express myself far better than when I say them. Maybe I'm awkward like that or maybe it's just that my brain and mouth don't always work well together. If I ever figure it out, I will probably just share it here!

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