These words are so very true, especially for me, in regards to yesterday. I strive to live a life of positive thoughts and I try to find the blessings in all things, but there are going to be days, such as yesterday, where I crumbled and I fall and I stumble. And those are the times that I have to allow myself to face the grief and pain and release it through crying and through writing or in my case, blogging, in order for me to move on and heal, and that is okay, it does not mean I am a negative person, it just means that I am a real person who has limits of what they can handle and as long as after I have cried and let it all out, I pick myself up, dust myself off and move on, seeing the lessons that can be learned and the blessings that can be found, for then I will know I am okay and I am able to move forward.
I believe that this is what makes this blog so unique. You don't know what you are going to find each and everyday on here. I don't know what I am going to say on here, until I am sitting down typing. This blog is a window to my world and I opened that window to let you see who I am and what I face and how I deal with those obstacles, for I believe we are all fighting a difficult battle and I feel that even though every one's circumstance is different, we all can find similarities in our trials and we can relate to one another's heartaches, fears, troubles and doubts, as well as our joys and triumphs, to the point of strengthening each other and growing through each others life experiences. If I can help one person out, by just sharing pieces of my life, then I have succeeded and I have helped to better this world.
I know that there are many times I talk about death on here, but for Payten, death is a real possibility and I don't mention it to sound negative, rather I voice my pain and sorrow regarding it, to help me coupe and prepare for when that dreaded day comes. Ultimately, I talk about it, for it is a real thought that enters my head often and like I said, it is a real possibility for Payten and I mention it to help try and strengthen myself, so that I am somewhat prepared for when that dreaded day comes.
Please bare with me through all of this, for there are going to be many, ups and downs throughout this journey. Like I said, I am an open book on here and therefore if you read this blog regularly, you are going to see the twists and turns and ups and downs. You are going to experience the laughs, as well as the tears and blessings, for that is what life is all about and that is what I am writing about, My Life, My Payten, My Family and everything in between that goes along with it! So please don't judge me when I have a bad day, we all have bad days and I know that I will always have some criticism for I am putting my life out there to read, but know that these are real thoughts and feelings and hardships and I am just doing the best I can and I am sharing them the best way I know how, which leaves me very vulnerable at times.
Now as for today, like I said at the beginning, I forgot how emotionally draining crying can be and therefore I was off this entire day. I did still take Emmett and Payten to the Pediatrician and no they do not have ear infections. Which is good and bad. Good that they are not sick, bad because that might have given me an answer as to why Payten bloodied her ears up. They are getting better though, here is a picture of one of her ears, (she would not let me take a picture of the other, which looks even worse than this one does),
And she would not hold still long enough for me to get a picture of her nose. I believe that most of the blood she was covered in yesterday morning was from hitting her mouth and also I believe her blood is a lot thinner than most due to all the medications she is on, so she bleeds a lot more than most. In any case, it is sad to see that is happened to a child, especially your own. The Doctor was shocked when I showed her the wounds, she was worried that they would get infected, therefore she called in a prescription for Mupirocin Ointment, which is a heavier strength version of neuosporin. Hopefully that will help heal her ear and nose up and hopefully we can get her to stop doing this to her body.
The Pediatrician and I had an extensive talk about my concerns regarding Payten and her seizures and she agreed that the Dosage of Keppra is too high, but that in order to get the seizures under control, we are going to have to play the guessing game and do trial and error runs, with all the different medications, until we find one that first off, can control the seizure with a dosage that is not too high for Payten to tolerate and second, one that has minimal side effects and that the side effects do not have to much bearing on Payten. So, unfortunately, it is going to take sometime to figure out and really gain control over these darn things, but at least I have a better understanding of what I am dealing with so that I am more prepared to endure it and face the challenges that are to come. Which is going to teach me patience, for I want the quick fix and I want it NOW! I was also able to get other things done while at the Pediatricians office, so all in all it was a very productive visit with a lot a good insight received in terms of Payten.
After the Doctors appointment, we came home and I completely vegged out. I left all the chores of the house undone and I just relax and tuned out, well as much tuning out as I possibly can with a two year and a Payter Tater! It was a much needed break, for I still had a headache from the events of yesterday that I was dealing with. Surprisingly, Payten did really well today, she only slept for a couple hours and then she was awake, happy and ready to play. It was a total turnaround from yesterday. Like I said, each day is going to bring a different circumstance and yesterday I was worried death was knocking on our door and today I feel she could live forever. Seriously, I feel crazy at times, but I have the comfort in knowing that I am not alone in my craziness, for we are all a little crazy, I just happen to be more open and sharing about mine! LOL!
This evening I had the opportunity to talk with Doctor Cook, Payten's Neurologist and he too agrees that part of her problem is, that she is not handling the high dosage of Keppra and therefore he lowered it back down to 13 mls and she was at 15 mls, not a huge change, but when she was at 13 mls she was handling it a lot better, even though she was having seizures. He is also working on getting a new seizure medication, sorry I do not have the name of it, for he said it over the phone and it was a long, foreign word to me. Once he gets approval for this medication, we will start using it and see what happens. It is the next best medication, to Keppra, that has the least damaging effects on the kidneys and liver, so that is why he wants us to try this specific one. The only problem is, the insurance company might deny the drug, because they usually want the patient to be suffering from a certain type of seizure disorder, which Payten does not have, but he is going to plead her case as best he can and hope that they allow her to have it.
Please pray that this all works out in Paytens best interest, for we need a miracle and we need one quickly. These seizures are having damaging effects and the more she has them, the more damaging they get. The Neurologist believes that her behavior in regards to her hurting herself, is due to both the high dosage of Keppra, as well as the seizures themselves, so once we get this all taken care of, and we can get these blasted seizures controlled, he believes that she should get better and hopefully not hurt herself anymore. So I am crossing my fingers and praying, that it will all workout and that the events of yesterday, will be a thing of the past, that will not repeat in the future.
I truly believe that things happen for a reason and I believe that I needed this breakdown I had yesterday, to help me see the damaging effects that it is having on me as well as on Payten and it gave me that much more incentive and motivation to fight that much harder to get Payten the help she needs. So even though I am happy for that day to be over, I am grateful it happened, for it helped to open my eyes a little more as to what I need to do and say. I love my life, even though I feel it is a crazy roller coaster ride at times, I just need to learn to buckle up and enjoy the ride. I sincerely believe I am trying to do just that, but sometimes it fails. I truly I am trying to embrace the come what may and love it philosophy. Though I fail miserable at times, I am still trying and I am learning and that is all I can do. That is what this life is all about, learning and growing, ultimately striving at bettering ourselves. I am so happy today was a better day and that Payten had a good day. Thank you for your thoughts and prayers in our behalf they truly were felt and made a significant difference. I love you all, good night!
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