Friday, December 21, 2012

3 Months

Ethan is 3 months out of surgery, and this blog is well overdue for an update. He is doing beyond fantastic, and our life is becoming normal in a way that we never thought to be possible. We often remember holidays around here not by the joy they brought, but by what "gifts" Ethan's epilepsy brought us that year. First off was Halloween, obviously a much loved holiday for kids. Two years ago we were fresh into this journey. He had only had 2 seizures up to that point. We were on edge of course, but had no idea what was truly ahead of us. We took him out and I remember one house that he got to where he suddenly looked up a little and dropped his candy. We knew nothing of different seizure types at the time, and although it struck us as odd, we didn't think much of it. He got home and just shortly after, and while sorting his candy he had his third ever tonic clonic seizure. This was the first one that both Mike and my Mother-in-law had witnessed, and that's a horror that never leaves you. There was shock and tears, and we watched our son have his first holiday taken from him as he lay postictle for the next 3 hours. Last year was slightly better. He was on his ketogenic diet which meant he could not have a single piece of candy, just one could send him straight back to the hospital. So we let him go as normal, but watched his every move making sure he snuck nothing. We took everything from him the moment he got home and attempted to trade some toy for his candy. Not how any 4 year old would wish to spend that day! But then there was this year, seizure free and like a new kid. He had a light about him we hadn't seen in all those years, joyfully running around the neighborhood dragging his sister along and telling her to go faster, him calling the shots. It was perfect, he was indistinguishable from any other child out there, and this Halloween will be remembered as his first seizure free, and back to being a typical child!
2010, 2011, & 2012
And that's what keeps striking us, we keep saying he's so normal, he's back to normal. So many parents get caught up in their kids being the absolute best, no less is to be accepted. Heaven forbid you come in second, not acceptable. Of course it's great to encourage them to be their best, but you must learn to accept their best. This stresses kids to no end, and can leave life long scars. But why not step back and wonder what's so bad about average? Why can't we just wish happiness for our children, nothing more? Average is perfect, average is great! After having no normalcy in our lives, and having an extremely delayed child I wish nothing but normalcy for him, because it would be a huge gift. Him being able to simply keep up with his class, and have normal relationships with his friends would be amazing. He is learning at an incredible rate, and he may be there in a few years. He missed 2 years of development, of retaining any information. He and Taylor play hide and seek. Ethan will count; 1, 6, 9, eleventeen, here I come! Taylor will count; 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 here I come! Developmentally they're nearly on the same level, her closing in on 3, and him missing 2 years making him around 3.5. Academically she's significantly ahead. That's hard to watch. But the surgery has finally freed his brain, and he's finally making steps in the right direction. He's writing his name, recognizing nearly half his letters, making observations about things like he's never done. The lights are finally on, and he's playing catch up! No doubt he'll get there, we just have to give him time.

A couple of weeks ago we were admitted in for a new EEG and sleep study. We were extremely nervous and anxious waiting for the news it would bring. We knew what we were seeing, zero seizure activity, and his breathing at night had become normal. But what would they actually see when they looked in his brain? We made it up to the hospital and were checked into our room. I get physically ill every time we have to go. The memories there are enough to haunt anyone. We sat around waiting for a long time, and later found out it was because another child needed 3 EEG techs hooking him up at one time because he just couldn't sit through it. What a proud mommy moment, my boy lays there stoic like the champ he is!

 Once he was all hooked up and the monitor was turned on, I saw all the spiking start. The ever so familiar signs that shows his brain isn't doing what it's supposed to. It was different, I saw the spikes reach the center of the brain and not pass through to the other side which showed the surgery was working, it was stopping the spread, but there was a lot of spiking, about every minute. I was getting nervous, and thought this meant the worse, we weren't seeing anything, but his brain was still a wreck. The sleep tech came in that evening to hook him up for his sleep study. Once again he laid
there not complaining as he was completely wired up. And once done, he fell straight to sleep. Could you sleep with all this over you?
When he had his first sleep study back in March, the tech was in and out of the room nearly constantly all night. This time I saw him come in exactly once. I woke up thinking that had to be good news, right? He came in to unhook the sleep leads in the morning. The techs can't actually tell you anything, but when I asked if he needed to turn on the oxygen at all, he responded with. "I didn't feel he needed it". No oxygen, his breathing was normal! It was seizures causing the breathing issues at night. I was still nervous about all the EEG activity I had been seeing though, but apparently there's a reason people go to school for years to read and EEG. The neurologist came in later to give us the results. Yes, there was quite a bit of spiking going to, however, the type of activity they were seeing actually corresponds with the extremely high dose of one of the drugs he's on, Clobazam. He's on a dose about 2.5 times higher than the highest recommended dose, and although it's been a drug that has worked fairly well for him, it causes changes in brain activity. Best news of all, he had ZERO seizures during the entire study, not one! What we had been seeing is what the EEG saw, no seizures! The surgery was working, and working great! We were going home off oxygen with concrete proof he was not seizing, I can't even explain how wonderful of a feeling that is!
Just after getting unhooked, and learning he's not seizing!
So we went home with one goal in mind, finally after 2 years kicking him out of our room! We took his bed down, his favorite toys, and his fish tank. All were arranged how he wanted, and it's amazing how much more space there now is in our bedroom! He is now living every kids dream, a nice big room attached to a giant playroom. He even had me print out a "No Taylor Allowed" sign, and yells it at her whenever she starts invading his new territory. We allow him to go up and down the stairs at will, after never allowing one step on them without us holding onto him. We're working very hard on taking a step back and allowing him to have the freedom that didn't naturally develop over the last 2 years. The fear is still there, and I don't know if it will ever leave. If I hear him make one of his typical seizure sounds, or fall suddenly I jump up and react before I know what's going on, and my heart races and adrenalin starts pumping. Obviously I'm not completely over everything that happened, and after only 3 months shouldn't expect to be. I still worry that in another month, next summer, in 2 years that they are going to start up again, and this whole nightmare will replay itself. I'm a worrier by nature, and really wish I could push those thoughts away. I still worry he will die every night, and often find myself sneaking down the stairs at 2 in the morning checking the blinking lights on his Emfit monitor to make sure he is breathing. When he sleeps a little late horrible thoughts start going through my mind. Hopefully someday these will at lease ease, and maybe pass.
His new room!
Right around the corner is Christmas, yet another holiday we mark with seizure activity, and yet another we wish to proudly announce was marked by none! He's so much more into it this year, so much more aware. He's loving every aspect. We let him go and pick out the tree he wanted, no matter how big or funny looking. We remind him that Santa is watching, and he's to be on his best behavior, and he gets it. We also know it's not seizures causing horrid behavior problems this year, and he's being held accountable. This is by far our happiest Christmas ever, and it's a time filled with joy and excitement for a change. 2013 is going to be a huge year. Taylor is 3 at the end of January, we're having a new baby at the end of February, and we get to watch excitedly as Ethan grows into a more amazing little boy every day! Our lives are finally filled with hope and excitement, instead of dread and constant fear. This kid is going places, and we can't wait to see where!

Picking out his tree.


  1. Taryn, I cry every time I read one of your posts. This time happy tears! It is an amazing journey that your family has travelled. I pray for Ethan every day, your whole family actually. He is a miracle and I am so glad that he is a normal kid again. I do not think the fear will ever leave you, and as a good parent that is to be expected. I look forward to reading all about Christmas and cannot wait to see pics of that new baby! Merry Christmas to your family and I know a Very Happy New Year!

  2. I'm thrilled for your family! We just got a normal EEG reading as well so I found myself nodding my head in understanding throughout your post. I pray continued blessings on your family. Merry Christmas!

  3. Wow what an amzong story. I cried throughout all of these blogs you have had for us. The good and bad. I guess it's BC I know exactly how you feel. I, myself has had seizure ever since I was born (26 yrs ago) I had small starring ones very often and grandmal that lasted 15 minutes each time at least once a month for the big ones and twice a day with the small ones. I've had 4 brain surgeries and then unfortunately had an infection so I had 3 more head surgeries and these surgeries all happened from 19-24 years old. Thankfully like your amazing son I've been seizure free for 3yrs but BC my level lowers now that I'm pregnant I have had another 2 grandmals but I'm sure after she's born I wont be having any.

    I'm just so happy he has parents like both of you that actually cares for their child even though he had to go thru this. Others would've just given up but you both didn't which makes you two amazing parents. Alot of other people don't know how frightening it can be to see these often I'm so glad you two ans your son are strong people. You deserve this very Merry Christmas and happy new years. Your family will be in my prayers. God bless you all!

  4. Wow! I am wondering if I could have your email? Our stories sound so similar. Our little Ethan is 4. Diagnosed with Doose at 2.5. 100% drug resistant, been doing keto for almost 2 years now. We are looking for other options. Here is my email: Would love to hear from you. Thanks for the hope that you bring to those of us that are still struggling through this.