We LOVE our neuro, hate epilepsy

The next day after Karsen's EEG was a busy Friday, like any other Friday. I was told that it could take a week to have the results from his EEG. It has to be read by two people then gets sent off to the neuro who also reads it her self along with the reports. So I really wasn't expecting to hear back anytime soon. I had a  brief 15 minute break in my day at work. My phone rang, I looked down a saw the caller ID read off our neurologist. My stomach dropped. I knew getting a phone call that soon wasn't a good sign. It had been less than 24 hours since we were there. Don't get me wrong, I am SO grateful they are prompt and on it, but in the back of my mind I was hoping.... well ok maybe it was not the back it was probably more like all over.... that I was over reacting, Karsen wasn't having seizures, he was just tired, we was just stuck in a stare like I do. Well, deep down I knew. I knew it was something, just like I knew when he was 7 months old and would have these weird spasm jerk things. I'm so glad I listen to my mommy gut, I'm so glad I ignored our epileptic specialist and went to our neuro. If I wouldn't have been so proactive Karsen's seizures could be getting worse. Our neurologist told me immediately that his EEG showed spiking that was accurate to the type of seizure I was describing. He also is having these spikes for 2-3 seconds, just short enough for us to not even think it was a seizure. The risk of not doing anything is having the seizures take over his whole brain, have them last longer, turn more severe. So, again, I'm grateful for speedy results. We are starting Karsen on Keppra which has been known to cause extreme agitation (perfect, right?! Let's add that on top of his frustration to not be able to communicate.) but our other drug choice option was not one I would choose for him (known to cause speech delay, and cognitive impairment). We'll also be giving him B6 with the meds, since it's been known to help with aggression. Praying this works. Praying for no more seizures. Praying for strength. Praising God for answers.

Couldn't leave you with out a cute pic of my handsome little man. His first school picture. 

Diet change

Karsen has handled the diet change remarkably well. We had our first big melt down when his brother and friends were eating mac n cheese and he was stuck with gluten free raisin bread with peanut butter. I don't blame him, I would want to stuff my face, burry it in cheese. Ha. If it were me required to change my diet, it wouldn't be pretty, not gunna lie. 

We've seen some amazing results. Karsen now sleeps until 5:30-6:30, sometimes even as late as 7:15. He even started pooping daily, TMI I know, something he's never done. We are STILL waiting on his blood work to come back and the additional tests we had done. Karter also had blood work done to see if he is having any food allergies as well, his tonsils need to come out, the kid snores like no other. If it's food related we may be able to avoid surgery for Karter. Not the kid I would think would need surgery but it's such a minor surgery, if needed I really wouldn't be concerned. 

Karsen's mood seems better, he seems to have less tantrums, although they do still happen, I'm not sure if that's a diet change or just growing in maturity. He's starting to try to talk a lot more now as well. Again, don't know if that's diet change or just him growing. Either way, we are thrilled. 

Karsen's 8 hour EEG is Thursday. We aren't 100% sure if he's having seizures or not! since they look so different than the ones he had before it's hard to tell. Praying we get some answers, and they get enough info in the 8 hours we will be there. 

How did we get here

That's a good question, how on earth did we get here? How did we get through those first three years of Karsen's life? How did we not break? How did we come out of it even stronger than before? One word, God. 

I would love to sit here and take credit for all the strides Karsen has made, all the wonderful things our family has done, how together we all are, the reality is, I can't. God has done some amazing things in my life, two of them being my amazing kids. I also would like to say our family is perfectly imperfect. That's right, we are all beautifully flawed. I am no where near the perfect mom. I could have more patience with my kids, keep up on the laundry more, keep dishes out of the sink more, play with my kids more, read to my kids more, we all have lots of room for improvement. I know one thing is certain, God picked ME to be Karter and Karsen's mom. He chose me to raise them, love them and care for them. What a privilege. And wow is it exhausting. It's had some serious downs and some amazing highs, just like any of your life struggles, life stories. We are still in the thick of it, being tested daily, some times hourly. I still struggle with the constant desire of wanting what I don't have, wanting my boy to start talking, wanting him to be "normal". In the midst of these struggles I'm reminded and what beauty Karsen has brought into my life. There was no mistake when God created Karsen. Karsen shows me the light without even knowing it. I love more than I've ever loved before. My heart is wide open with no fear. 

How'd we get here? How'd we survive? How do we continue when it's rough? How do we love with out fear? How. Do. We. Live? 

One day at a time. One hour at a time. One minute at a time. One breath at a time. One prayer at a time.

Enjoy the beauty. Enjoy the ride. Live in that one exact moment. 

Live now.