Originally posted 2014-11-17 20:07:23.
We recently had the 72 hour EEG done on Dusty to investigate further just how many seizures he is having, or at least to get a better understanding of some of his random movements. We have wondered for a while now if some of those random movements Dusty makes were muscle spasms or actual seizure activity. We got an answer to some of that this past week. The results of the EEG were not what we wanted to hear but it was an answer. He had seizures every day of the 72 hours. He had petit-mal and absent seizures for the most part. He had so many absent seizures that even the doctor admitted to it being nearly impossible to count all of them. The bigger ones where he would end up falling or worse hitting his head is what he is most concerned of at this point. Not that he isn’t concerned about controlling them overall but the ones like he had the last day of the EEG where he fell since the potential for further injuries is there.
So after studying the EEG and the video footage we had to discuss the next step to take. Now another issue that may be adding to these complications is Dusty’s weight loss, which has averaged about 5 pounds a month at his point. His weight the day of the appointment was 121 pounds. With the constant change in his weight it makes it harder to get the therapeutic levels of the medications at the right amounts.
Our next assault is to take him off of one of his current medications and replace it with another.
So we will gradually decrease his Potiga, which he is currently take 1 pill 3x a day. We started by taking away one of them but added the Fycompa (perampanel) tablets once per day. We will start at 2mg of that and then go back to see him in a few weeks to see how he is doing. He doesn’t want to have him on 4 different seizure medications on top of his other medications prescribed by his other doctors. We are trying ride the line of controlling the seizures and giving a quality of life where he isn’t just sitting there constantly so drugged up on meds he is zombie like or even to the point of comatose. He wants him to be able to function the best he can and be able to enjoy the life he has not to mention the gift we were given.
Sometimes I wonder what it would be like had I not gone back to the Dept of Social Services at the end of that 30 day period and revoked the adoption papers. Not that I regret doing it just wonder how his life would be. Would he be better off had he been adopted by a family or couple that had better resources than I had access to? Could he have been able to have a “normal life” had I not gone back to get him? The thoughts like this cross my mind from time to time. I wonder what could I have done differently that would have given him a better chance at a normal life. I don’t wonder why God, or anyone for that matter, chose to give him to me. It’s not a “why me” issue, its more life a “why Dusty” issue. I wonder how his life would be had I left their bio-father sooner but then had I done that I would not have Kayla. I mentioned to his neurologist just the other day at his appointment if I had said yes to the doctors early on when they suggested putting a shunt (if I spelled it correctly) in his skull would that have given him a better chance? His response was a bit comforting because he stated he is glad I didn’t elect to do it. I guess at that time in medicine it was seen as a good thing to do and over the years there were a lot of cases where the patients ended up with life-threatening infections because of the shunts. I wasn’t given any specifics of course but I didn’t question his opinion. I trust his opinion. I have seen many people who don’t have that “bond” with their child(s) doctors and prefer to have one where I can speak my mind, give my opinion, question the doctors actions without their arrogance being at risk of being damaged. Dusty’s had two neurologists over his 21 years that stand out, one of which is his current neurologist. The other is the one that diagnosed him. She is now a professor at a university in Lebanon. She is the one I spoke about telling their bio father had he kept his hands and feet to himself Dusty wouldn’t have come out like he did. She was a feisty little thing too. I remember her words to this day. Was it per say “professional” of her to speak to him that way, probably not, but you know what, I respected her more after that not for being a doctor but just being a woman, mother, and speaking the truth to someone who others would have otherwise not said a thing.
I remember the bio-father telling me that it was my fault that Dusty was born with these problems. See, there were several times during that toxic relationship that I tried to end my life, or at least alter it to the point I would somehow be dealing with less of what I was dealing with. I remember drinking some of the tire cleaner Bleach-white. You sprayed it on the tires that had white walls or the white lettering and it literally “bleached them white”. I wanted out of that relationship, that family, that home, that life, all of it. I don’t remember how much I drank but it wasn’t that much. I think I may have ingested at the max, a cup, if that much. It was a hard thing to swallow. I remember after drinking it I chased it with come regular Coca-Cola. I went to the hospital shortly after all of this and well, it ended up being a failed attempt at ending my life. To my surprise, the Coca-Cola saved my life. The doctor actually told me, had I not ingested the soda it may have caused internal damage but since I did it neutralized the chemicals in the product. Now had I been pregnant at the time of this incident I am sure the doctor, hospital would have brought it to my attention but no one said anything about me being pregnant. It would have been very, very early on in the pregnancy if I was even pregnant at all when this happened. I am pretty sure the doctors at some point would have said something about this at some point but as I said no one said anything. I just think the bio father was trying to deflect the blame to someone other than himself.
I really wish at some point in his life he truly understood just what he did and what kind of life Dusty has, what he goes through, suffers, lives with, all because he couldn’t keep his hands and feet to himself.
I think he owes my children so much more than he is forced to give. I feel he should have to support Dusty for the rest of his life. Why does he not have to support him anymore? The monies paid now all go into arrears at least for Dusty. I am not 100% sure on Kayla since she is in college. It baffles me as to why he wouldn’t feel obligated to help support him even after the law states otherwise. He knows what Dusty was diagnosed with and for the most part knows how his life is. It shouldn’t matter if my husband makes enough or doesn’t make enough. He is and will always be part of his responsibility, no matter what. My husband states he wants nothing from him. I can understand why he feels that way. I mean my husband came along and be what the bio father was not , Their FATHER. I think sometimes my husband maybe feels like if the bio father helps in anyway that he would be obligated to spend time with them. My children want nothing to do with him at all.
I realize there are some situations where the bio father is willing to pay the support and for other reasons the mother will not allow him to spend time with the child or children but this isn’t the same.
I feared for not only my life but the life of my two children and that fear ruled my life. Now because of his abuse, my life, Dusty’s life and the rest of our family is left to wonder just how much more will he have to endure. How much is he responsible for since he is the one suffering with the results of the abuse. It isn’t Dusty’s fault that he was born this way. I catch myself sometimes laying the blame on myself since I didn’t leave sooner, since I didn’t try harder to find a way out. If I had tried harder I might just have gotten out even if he had beat me to a pulp. I could have been out. Then again, I wouldn’t have Kayla. I don’t know what to think sometimes. I just know I am grateful for having been given the lives of my two children even if I had to get beat in the process. That may sound strange to some, hell I am sure there are those people who would say it is more my fault than that of the abuser because I didn’t get out. It’s not always the most obvious answer to some of those people. They will never understand the process that one has to go through to fully understand what is going on. I think sometimes its like looking through another set of eyes other than your own. I don’t want to feel like I am to blame for Dusty’s “special needs” but the same person that took me from the young, vibrant, out-going, strong, spirited woman to the woman who would rather run from mirrors and thought I deserved nothing more than what he had done to me. He led me to believe I would never be more than he made me. I would remain the woman always left at home, unspoken, unseen.
But now, I slowly have learned that I had more worth than he led me to believe.
I am worth more because I am a mother, a wife, a daughter, a friend, and will never again be worthless.
