Wednesday, February 15, 2012

6 weeks seizure free!!

I just wanted to take a minute between work, homework, family and life to update everyone on Zac. He's been seizure free for 6 weeks! I have seen a big change in him. Keep in mind that sometimes I may go a few weeks between seeing him. He seems more calm, stable, and mature (which he was quick to point out may be due to him being a "pre teen") than ever before. We're now able to see some of his personality and qualities that have been lost for some time.
For some that may not know, my sister was a high school and middle school teacher. She did not renew her contract last year so she could home school Zac. He needed more one on one attention. He seems to be improving by leaps and bounds! Of course they have days that his meds have him "out of it" and they both get frustrated, but I am proud of Zac and Casey for making it work.
I'll try to keep everyone up to date of Z man. Thanks for all of the concern and prayers.

Until next time.... spread the word, stay tuned, and count your blessings everyday!

-Zac's Aunt Court

Thursday, January 5, 2012

Rough Day for a Little Guy

Now that my own children are safely tucked in their beds I can grab a few minutes to update you on Zac. He had two unexpected seizures today. The second quickly followed the first. I could hear the frustration in my sister's voice as she told me the details. Who could blame her? They just cut half of her son's head open twice a few months ago and he's still having seizures. Not near as many, but still having them, and this makes three in a week.
It's funny how (I believe) god can take a phone call or conversation or situation to bring you back to reality. As stated in my last post, I have had my own little medical journey over the last 2 years. I recently went to a neurologist myself. And... let's just say I got some good news but was put on a medication that is similar to one of Zac's 4 pm medications. Boy was it eye opening! It has given me a new respect for that brave kiddo! How dare I complain of my side effects to ONE medication or car trouble or whatever minor thing my day has brought. Hearing about his day made all of my troubles seem so small..... back to reality I came. Talk about a god wink!
His quality of life has improved since the sugery, but we had really hoped for healing. Please just take a minute to say an extra prayer for him. I'm well aware that there are many children out there that are worse off. But at the same time it is very taxing on both Zac and his parents when he has setbacks. I'm hoping they'll find a solution soon. I will try to keep you posted on his progress. Thank you for all of the thoughts and prayers.

Until next time......... spread the word, stay tuned, and count your blessings everyday!

-Zac's Aunt Court

Saturday, December 31, 2011


I wanted to let everyone know that Zac had his 3rd seizure (since his brain surgery) yesterday. Of course I got the call from my sister yesterday afternoon while in the middle of a 4yr old having a meltdown, ham, mac n cheese, and 10 other things cooking for dinner and company and I felt like the worst sister ever for not giving her my full attention. :( From what I understand they were out and about and he wasn't 100% all day. Then on the way home he had a seizure. There didn't seem to be anything out of the ordinary that happened yesterday that may have triggered it, and of course he had all his meds. It just goes to show that he may not be out of the woods yet. Most people think that he had surgery, and a magic wand solved everything. Though it was our hope that he would never have another seizure after his surgeries, yesterday was just another reminder that we need to keep Zac in our thoughts and prayers and that his journey may not be over yet. I thank you all again for your support. I'll try to keep you informed of his progress when possible. (when I can get a minute to type while the baby is asleep) I wish you all a very happy and safe New Year!

Until next time..... spread the word, stay tuned, and count your blessings everyday!

-Zac's Aunt Court

Saturday, December 17, 2011

Eye Opener

I've been meaning to post and just haven't found the time, or haven't made the time I guess. I have had quite an eye opening experience/journey of my own over the last 2 yrs. It has become one of those full circle, "aha moment" kind of things for me. I want to be careful not to go into too much detail or focus on myself too much because the focus of this blog is Zac.
To make a long and boring story short and sweet, I have had my own little tiny medical.... "journey" or "issue" or "mystery" over the last 2 yrs.I never really considered it more than a small inconvenience until recently. I've been through the whole process of hours spent searching my symptoms, "dealing" with it, and finally seeking medical help after my husband threatened to tie me up and take me himself. So far I've been shuffled to the cardiologist, one Dr that shall remain nameless... (let's just refer to him as the "quack"), finally a good family MD, and will soon be headed to a Neurologist. What is my point in spilling all of this?? Well, a few actually. We've managed to eliminate a few things so far and my family MD seems to think that Neurology is the next logical move for me. As he's trying to be frank and lay it all on the table, while still trying to be sensitive, he throws out (in his opinion) the top three concerns/reasons he is referring me to this Neurologist. One of those is what is referred to as "absent seizures". Yep. You read it right. I've spent night after night (I don't sleep much and when I do I tend to wake up a few times throughout the night) reading about seizures and didn't spot the signs in myself?? Personally I think this one option is far fetched, but hey, I'm just little old me. What do I know? I feel that the other two things he threw out were far more likely than this. The reason I'm posting all of this is to try and get the wave of emotions accross. I'm a grown woman with three kids of my own. I've been through more than most in my short life, yet I was terrified at the thought of this Neurologist appointment. Of course I called my sister to have her "talk me down". I had a long discussion with my husband. And in the middle of all my questions, confusion, and fear, it is my 10 yr old nephew that has become my inspiration. He has been through medication after medication, seizure after seizure, ups and downs, fear and trials, and he has faced it all with the courage of a lion. The child has been hooked up to countless machines. He's been in the hospital multiple times. He's had his head cut open twice, two 10 hour surgeries.... and he has taken it all in stride. Yes, he's cried. He's gotten frustrated at times. But for the most part he has lived his life to the fullest.
So for whatever this next step in my own medical journey brings, be it an MRI, EEG, or whatever... I say bring it on! I refuse to let the questions and "what ifs" drive me crazy over the next few weeks. There are people dealing with much more.
To my silly, brave, rotten little "Zacarina" I say, thanks little man. Thank you for giving me the courage to face my own fears. Add this to the long list of good that has come out of your journey.

Christmas is coming soon. Take a minute to look past the presents to see what is valuable in your own lives. Be thankful. Remember what Christmas is.

Until next time, stay tuned, spread the word, and count your blessings everyday!

-Zac's Aunt Court

Friday, November 4, 2011

Epilepsy Awareness Month

As I was changing my profile picture for Epilepsy Awareness Month on Facebook, I realized that I had not posted to the blog since Zac's big day! His surgery was in the middle of a new semester for me at work, and with three kids of my own, I guess I've just been busy with life.
His Intracranial EEG went great!
He has had a seizure since surgery, but I am very happy to say that tomorrow he will be 7 weeks seizure free!

This is the longest he's been since they started 4 years ago!! I've had the pleasure of Zac visiting a few times since surgery and he seems to be doing GREAT!! The hardest part is trying to tell a 10 yr old boy that he can't get on a bike, scooter, ect. But, all in all, I am amazed! I hope he will continue to improve. He had a check up with his Dr in Augusta on Monday and from what I understand it went very well. His parents went into this with the hopes of improving his quality of life. So far, so good. :)
I hope everyone will take a moment this month to learn a little about Epilepsy. November is Epilepsy Awareness Month.

Read an article, talk to someone affected by it, and help us to spread awareness. I know as a mother, that my sister has struggled with the "why my child" from time to time. I like to think that Zac was handed this so that he could bring people together and make the world a better place. And boy has he!! Thank you all for your calls, concern, and prayers! I hope he continues to improve and I will try to post more often. ;)
Until next time, spread the word, stay tuned, and count your blessings everyday!

-Zac's Aunt Court

Thursday, September 1, 2011

The Big Day is Here!

It's with red swollen eyes that I type this entry today. But not out of worry or fear. These tears come from pure love and joy. Zac will be having his Intracranial EEG here in about an hour. The number of people that have come together for him and have been praying for him is amazing.
How am I not scared to death for him, you ask? How am I not a worry wart? The answer is easy. I've researched, taken notes, and typed about epilepsy until midnight many times with the hopes that it would make me a better aunt, help me be able to help more, and to spread epilepsy awareness. But I, like Zac and his parents, have had to lay it all down. This is bigger than any of us and I truely believe that there is only one that can handle this. There will be no spirit of fear welcome today. Only hope, love, peace, clarity, and joy. Please join us in lifting Zac up. Thank you all for taking the time to care, help, and pray. This is the next step in Zac's journey.
I will update everyone asap. Thank you all again for everything! I know it means the world Casey, Dewayne, and Zac.
Until next time, spread the word, stay tuned, and count your blessings everyday.

-Zac's Aunt Court

Friday, August 19, 2011

Intracranial EEG FRIDAY'S FACT

It's been a few weeks since I've posted. Zac's Intracranial EEG will be on September 1st. I thought it would be fitting to put some facts out about Intracranial EEG. I've had several people ask me about it. What is it? Why are they doing it? Ect... I hope this post will help to answer some questions. I'm not Web MD or a medical doctor. Just an aunt that at times becomes obsessive with Epilepsy research for selfish reasons.

When scalp EEG and neuroimaging scans don't provide enough information to preform epilepsy surgery, it may be necessary to preform an Intracranial EEG. It's an invasive procedure that places electodes on the surface of the brain to get an accurate reading of the brain's activity.
There are two types of Inrocracranial EEG's. One is called Intrapoerative Electrorticography. I'm not going to go into huge detail with this one b/c Z man is having the other, which is called Extraoperative Monitoring. In this Intracranial EEG the electrodes are placed in or over the brain in the areas where the epileptic focus is thought to reside. They are then left in and on the brain at the end of the operation. Recordings are made from electrodes while the person is awake and alert, and having seizures. They are then removed at a later date (average seems to be 4-5 days) with the hopes of gathering enough data to be able to remove the sections of the brain that are causing the seizure activity. Extraoperative EEG is usually used when surface EEG scans cannot pinpoint the seizure site, various scans show conflicting information, or when there are seizures from more than one area of the brain.
There are 3 types of electrodes used in Intracranial EEGs. There are strip electrodes, Grid electrodes, and depth electrodes. I know that he will have grid electrodes (one on each side), but I'm not 100% about which kind are going in the back. He will have 4 total.
The hope is that they will be able to collect enough data to be able to determine what the best next step is for Zac. That next step may be a surgery done at the same time that they remove these electrodes. Last I heard from my sister, it will take them about 9 hours to perform it. I could go on and on with the tiny details about it, but I don't care to. I trust that this is the best solution for Zac. I know that God doesn't make any mistakes and that Zac is hard at work on his testimony.
At this point it looks like they will be at the hospital for about 3 weeks, and then he will have a 3 month recovery time at home. Of course, if they decide to do another surgery when the electrodes are removed, then those time frames may change.
I will try my best to keep everyone posted on Zac's progress. I hope I was able to answer a few questions about the Intracranial EEG itself for some of you. Thank you all for keeping up with Zac and spreading the word. Please help us to lift him and his parents up in prayer. I know at times prayer has been all that has gotten them through.

Until next time.... stay tuned, spread the word, and count your blessings everyday.

-Zac's Aunt Court