Brain Surgery? Wow, did I just type that?

We met with the Chief of Pediatric Neurosurgery and Epilepsy Neurologist from Oakland Children's Hospital on Monday. Nicholas' Neurologist recommended we meet with them to discuss our options for Nicholas and brain surgery. We have tried so many things over the past twelve years for Nicholas in regards to his seizures. Various medications, vagal nerve stimulator, ketogenic diet... all had our hopes of helping to control his seizures. Some helped and some still due, but the fact is that Nicholas still has seizures daily and they have never, I mean never, been controlled.

I remember when Nicholas was little and we talked about brain surgery, we never thought we would have to "go there". We  always had hopes that this isn't what his life will always be like with daily seizures. We never gave up thinking that the next med, or the next procedure wouldn't work. We didn't think they were they cure all but we thought for sure they would help or at least diminish his seizures. Unfortunately, we were wrong.

The neurosurgeon was very realistic. They told us that this isn't curative, this is palliative. It would help give Nicholas a better quality of life and that is all Ray and I have ever wanted for Nicholas. Anything we have ever had him undergo was to help him live more comfortably.

I remember having his G tube placed. I thought I was the worst mother on the planet. How could we have failed to keep him thriving. He was losing one of the best things in life, to be able to taste and eat food. I felt like a failure. Ray was always positive and said we did everything we could, it just wasn't enough. In hindsight 3 years later, it was the best thing we could have ever done for Nicholas. He is healthy and thriving and when he is sick there is no stress around getting food into him so that he can have his seizure meds if he has a flu. We can just put his meds and his food through his tube and he is taken care of. It was life changing.

When we had his back surgery, I thought personally I was never going to get through that and it wasn't even about me! But as a mom, I didn't think I could handle putting him through so much pain. The worst part and it always is, is putting my child through something that he doesn't even know is coming or why we did it to him. He only knows he is in pain and doesn't understand why. That, I think is the absolute worse thing in the entire world. The pain is so hard it makes my heart literally hurt it. With all that pain though came the beauty and wonder of a straight back and a kid who is so much more comfortable and healthy. He can breathe with both lungs completely and sit tall when he is working in his program. He no longer has to focus on trying to sit up but can focus on what he is trying to learn. It is simply amazing.

We won't be doing surgery until the beginning of next year but after all that we have been through in the past and with the amazing outcomes we have had, we know this is the best decision we are making for Nicholas. His seizures will be hopefully cut in half in severity and the goal will be to come off of some medications. It will be a terribly trying time in our lives once again, but I know in my heart, we just may see the light in the eyes again of our angel boy Nicholas.

Ketogenic diet, not the miracle we were hoping for..so far?

Well today I got in touch with an old friend via facebook. He read my older blogs and gave me such wonderful feedback, as everyone else has in the past, that it really reminded me I need to start blogging again. Thanks friend, here it goes after many, many months.

I could try to catch everyone up on all the things that have gone on since April, but really, you would be reading a blog the size of the New World Dictionary so I will refrain from doing that to you. Instead I will say that everything at home is status quo. Maddie started 2nd grade in August, Nicholas continues his in home programs, Ray is still doing the work grind at the State and I continue to be Wife/Mommy and care for Nicholas' at the homestead. I started taking Photography classes this last year and LOVE it!!! I have another class starting in a week and can't wait to start my own business in a year or so. That is a whole other blog in itself.

I think the thing foremost on my mind right now is this.... I am very sad to say that I don't think the Ketogenic diet that we started for Nicholas in August has helped much in decreasing his seizures. I remember watching the made for tv movie First do no Harm, about the diet prior to starting Nicholas on it and we had so much hope. I cried watching that movie. It was so amazing that a diet can change the life of a person with seizures. This child had seizures daily like Nicholas, and once he started the diet (no sugar at all), his seizures went away. Granted we did go into this with open eyes. We know Nicholas was born with a brain abnormality; a structural defect. The brain is a very amazing organ and when it isn't formed properly, things go array. In Nicholas' case, they go array at least 5 or 6 times a day with his seizures and those are the ones we can see. Many happen that we don't even know about. I was so hoping that we could at least decrease seizure meds with this new diet.

There have been a few occasions when Nicholas was without seizure meds (flu and couldn't keep them down), and he was this different child. Yes he was sick with the flu but he was more... "there". I don't know how else to say it. He was more alert, aware, smiling. I know he has so much potential without being medicated. I know he wouldn't be losing hours for his program funded by the State due to his horrible acquistion rates if he weren't so medicated. It is such a horrible thing knowing that what you give your child every day is what is making him be a different person. I know he would have better luck potty training (yes we are still in diapers at 11, and who knows how long). His head would be more clear, he might be more verbal. So many things I just know would be different if we could even decrease his meds. I am not talking completely med free, I just don't think that could ever happen, but a pill? That isn't asking that much is it? When your kiddo takes 14 seizures pills a day,  just one pill isn't asking a lot?

Don't get me wrong, it hasn't been totally for not. We have seen a minor change in the severity of his drop seizures. I guess yes, that is a good thing.  But when you are depriving your child of eating by mouth some of his favorite things like popcorn for such a minor change, is it worth it? He has such little pleasures in his world, and eating popcorn, silly as it seems, was an all time favorite thing to do. My husband and I talk about this often since we have had Nicholas on this diet. Is it worth it?

Nicholas has had a G tube since 2009. It has been a God send and especially on this diet it is everything for us. We wouldn't be able to do it otherwise. Thanks to a formula called Keto Cal, we can have him on this diet with no problem at all. With the exception that he doesn't eat anything by mouth that has sugar in it. To make it easy we just cut out food by mouth which is fine with his Keto dietician. He really didn't eat meals by mouth anyway, his main nutrition was from his G tube, but he LOVED popcorn and snacky, crunchy food. The doctors have told us Nicholas life span isn't going to be long. There is no certainty as to when he may pass on from our beautiful planet earth.  A Seizure will just go directly to his sweet heart one day. When you know this as a parent, it is hard to deprive your child of the things they like. It is a quality of life thing for us and we struggle with this often. We want to make his life happy. He has so many challenges every day and it is our job as his parents to make him comfortable, happy and stress free as much as possible.

So the 17th of January marks the 5th month. We said we would try at least six months and make a decision at that point. That is still the plan. So on we go, marching forward, one day at a time, one day at a time.

For more information on the Ketogenic diet visit http://charliefoundation.org/  Nicholas is just one child and there are so many children that do benefit from this diet. Regardless of our story, I would still highly recommend it to anyone who has seizures and is willing to make some very significant dietary changes to try and decrease those seizures.