Monday, December 20, 2010

Back for another round

So we are officially back for another round of tests. We were asked to come back since they advised us that if his seizures continue he will have permanent brain damage, not exactly what we wanted to hear. This whole time we thought he was doing great, going from 12-20 plus a day to 1-3 a month from March to August, and 3-7 from August until today. We were wrong and now we are back.

We have three options as it stands, the first (not in any order) is another surgery. Honestly that is not a very reassuring option as I am sure we will be told again, that another surgery is not in favor of us (statistically speaking) as the first one. Not to mention I am almost positive that we are going to be told that the section of brain that they need to remove is going to be his motor strip. Yeah, his motor strip, meaning possible paralysis on his right side and it is also possible that no amount of therapy will fix that. Not exactly a choice a parent wants to make, especially since there is now more a chance at failure then the first time.

Another option for us is the Ketogenic Diet, there is really to much on this to explain here so I'll break it down very simply for you. It sort of starves the brain, bringing it into a ketosis state. Stats are not on our side on this one, but they were with the first surgeries and look at us now. I think we are both in favor of this choice, seriously how many surgeries will it take, and how much brain will they have to take out before they either give up or he is not the same boy we love. This choice means a very strict diet, but those who have followed it have been "cured". Not all of them, actually a small percentage, but we seem to fall into small percentages all the time, so why not give it a try. The worse that could happen would be that it doesn't work, I lose weight (since I would do it with him) and we have to reevaluate our options again.

Another option is the Vagues Nerve  Stimulator, VNS for short. This is another options that is going to take forever to explain but simply put, it is an operation where they implant him with a machine (for lack of a better word) that will send an electrical pulse every time he is about to have a seizure to scramble the one his brain is sending. Kind of like short circuiting his seizure; although this is not proven, and there is much debate about this option.

Another option is to do nothing, sounds a bit like giving up, and irresponsible, but I guess it depends on how you look at it. This is another option that will cause much debate, like we are depending too much on God for a miracle and not looking at medicine (Which he created) to find a solution. And other would debate the opposite angle, that by not doing anything we are depending on an Almighty God, who has cured sick, caused the blind to see, lame to walk, raised the dead, and given us all hope.

I am not here to be the center of debate, whatever choice we make we ultimately are responsible for it, that alone is enough weight to bear. Those who have walked similar paths to this understand what I am saying and those who have never walked these confusing paths can only guess what it is like, never really understanding. That last sentence was not meant to hurt, it is the truth though, I can say that since I am going through it. After going through all of this I am fairly sure that I will not try to question any decision that is made when it come to health issues. I will never understand what it is like to have a child dying of cancer, so when I meet one, I listen, and am very careful with my words, and support them in any way that is possible, if only with prayers then so be it.

We have had the privilege of meeting incredible parents and children alike who are suffering through things that no one should ever have to, you learn that every situation is different, special, and incredible in their own sense. There is the girl in the wheel chair who is fighting cancer, one leg and lost hair. If you looked at her and judged her by her appearance you would say she was sad, and unfortunate, the moment she speaks you hear life and can sense a spark. I'm 31 years old and am intimidated by her presence, not because of the way she looks, but because of her attitude about life. Being around the "sick" puts things back into perspective, I think I just need to visit here every 6 months to remind myself.

Sorry about that tangent, I just started to roll and realized I am off course. Options, so many options and so much to think about. We only ask that you would pray for us as we choose our path.

Xander is doing well, besides a bug he caught last night, he is so positive about things and strong beyond his years. I am so proud of him, and when he is older, he will be on heck of a man, in every sense of the word. Those who are around him will be blessed, and whoever he marries will have a kind a considerate husband. He is always thinking of others, even now; when everyone received a brownie, except me, he offered half of his without blinking. Hugs and kisses come at the most unlikely of times and sweet smiles pour off his face like a sudden storm. He is contagious to be around, nurses are amazed at his sweet nature, and Doctors have mentioned his bravery and ability to do things that children 2 or 3 times his age are unable to handle.

We are in the middle of a storm, 9 more inches to add to the 18 on the ground, so I have to get off. The twins are terrorizing the playroom and I am sure it is going to take 30 minutes to pick this place up. I'll post more as time allows.


  1. Thank you for keeping us updated. It was so good to see a post from you pop up on here yesterday...because I am thinking about you several times a day, wondering how things are going. I'm always tempted to text, but then think, "How are they going to respond to 'How's it going?' with a mere text??" But I want you to know that you are in my thoughts all day.

    And we are praying every day. We pray with Ella for Xander and she always says "Loli-Loli-Clap!" - a game he made up for her on our last visit. So, so sweet.

    We love you,
    Erica & Family

  2. Dear Danny, Sara y familia, We are so sorry to hear about this turn of events. As you know, your Tio Samuel is in Puerto Rico with your Dad and other Tios for your grandfathers funeral. He called last night to tell me about Xander and I am praying for him, for all of you.
    My cousin in Texas has a Doctorate in Public Health. She has read research about the Kitogenic Diet and says "At least it can't do harm and it has been truly miraculous for some patients". Wanted to share that information with you as well as our wishes for the best Christmas you can have in a place where everyone wants the best for you and yours. Peace & blessings, Tia Maria Torres in California