Honestly, it is hard to go through, because as a parent, you want what is best for your child and sleeping the day away is not quality, rather it is just quantity and no parent just wants quantity of life for their child, but rather they want both quality and quantity and I feel as though we are being stripped of the quality and that there is absolutely nothing we can do about it and it is literally killing me inside. However, with that said, we do have a few more days to see improvement in Payten, in regards to the increasion of seizure medication, and hopefully we will see improvement because of that increasion, for if we don't, then that will be the determining factor that tells us, that it is indeed her neurological disorder and that she is indeed declining neurologically from it and not just solely declining due to seizures, which will mean that she will have to endure more tests, which will help determine how fast and severe the progression actually is, which will then help us to know a little better as to how rapidly things will continue to decline. Therefore, I want to sincerely ask, that if you do believe in the power/miracle of prayer, please, if you will, keep Payten in your prayers, for she is in dire need of them. And we ask that if you do pray for her, that you sincerely ask for the will of the father to be done, whether that be to help her get better or to have her return home to Heaven, either way, all we want, as Payten's family, is what is best for Payten and we sincerely believe that the will of God is what is best for her, whatever that will may be. So please, I am begging you, pray for my daughter, because she sincerely needs those prayers.
Now, before I move on with sharing about the rest of my day, I want to share something that I shared on instagram today, which was a picture of all the medications Payten receives daily,
The reason I felt inclined to share this with all of you, is that I feel as though, I am constantly talking about the different medications Payten receives, but sometimes just talking about it, does not help you in understanding just how much she is really taking, until you actually see a picture of all the medications. Therefore that is why I took this picture, in hopes that it helps you to understand just how much medication this little five year old girl needs take in order to help her to sustain life and it is crazy just how much it really takes, isn't it?! Also, not only did I want to share this picture with you, but I also wanted to break all the medications down for you and explain all the different ones that Payten is on, so that you may understand what all is depicted in the picture and why she takes what she does.
The list of medications that Payten takes twice a day are,
Onfi (seizures), Vimpat (seizures), Q-Dryl (antibiotic that she will be finished with in a week), Cirprofloxacin (another antibiotic, that she will finish within the week) and Pulmicort (nebulizer medication for breathing).
The list of medications that Payten takes three times a day are,
Leucovorin Calcium (cerebral folate deficiency), Guanfacine (facial dyskinesia), Senimet (GTP clyclohydrolase deficiency), Vitamin B6 (GTP clyclohydrolase deficiency) and Clindamycin (antibiotic, that she will finish in a week from now), Plus, she takes Albuterol, which is another nebulizer medication that helps open her airway and that is PRN, which means it is given to Payten on an as needed basis, every 4 to 6 hours.
And there you have it, Payten's list of daily medications, that she receives at least twice a day, if not three times a day. It is a crazy, long list, isn't it? And to say it is a tedious task, would be an understatement, for it gets very tiring, giving her the same medications daily, but you do what you have to do and these medications are necessary in helping Payten to sustain life, therefore we give them to her in hopes that we are doing what is best for her, in hopes that it is giving her quality and not just quantity of life. Now that you have a better understanding of all the medications, Payten takes regularly, just imagine having to spout off that list of medications, along with the dosages, etc. at each and every Doctors appointment Payten has and welcome to my world! LOL! Good thing I have a good memory, for I don't know what I would do if I didn't. I guess, I would be constantly printing off a med sheet every time I took her to the Doctor, to hand to them, knowing that if I didn't, there would be no hope in them getting a list of medications from me. Also, let me just say, that I am beyond grateful that we do not have to fight with her to take these medications by mouth, due to the fact that Payten can not take anything by mouth, therefore that is why we have the G-tube, which allows us to push all these disgusting medications through. Seriously, what a blessing that has been, for can you imagine having to try and give all these medications to a child by mouth? Seriously, it would be pure torture for the both of you and they would never get them, rather you, the parent, would be wearing the medications instead. So like I always say, there is a silver lining to everything and in this circumstance, the G-tube is our silver lining.
Okay, moving on! As most of you know, a couple weeks ago, we met with Makenna's teachers to discuss how Makenna was doing in school and her teachers shared with us that they felt it would be in Makenna's best interest to stay back a grade, due to social immaturity, which Joseph and I completely disagreed with. Which caused that meeting to end with no solution as to how we were going to help Makenna and her situation, therefore we had to schedule another meeting, in which there would be more facility present, in order to try and help persuade us into the direction they wanted us to take, which was to keep her back a grade. However, they do not know how stubborn Joseph and I can be, especially when it comes to our kids and their best interest. But with that being said, something that you may not know about me, is that I detest anything that could result in conflict/contention, therefore I am one that does not like to stir the pot/rock the boat, which usually ends in me giving in and going with the flow, in order to avoid conflict.
However, today was a different story. Today, I found my ROAR and was able to unleash my Momma bear side! Something came over me, which helped me to find my inner strength and helped me to realize that not only have I grown in patience and love, since Payten came along, but I have also grown in assertiveness and strength, which I feel came from parenting Payten and having to advocate for her. Which worked out in my favor today, for all of these traits came in handy. Now let me explain, I went into the meeting sick to my stomach, panicking that it was going to end in contention and I left the meeting, feeling opposite! For I left the meeting feeling as though I had the EYE OF THE TIGER in me, now laugh in you must, but I am being serious, that is how I felt! And to make it better, I had Katy Perry's ROAR song going through my head, for that is how good I felt after the meeting! For I allowed my ROAR to be made apparent, rather than just backing down and giving into their ways, in fear that there might be contention. Can we say, awesome?! Because I was awesome today! Believe me, I am beyond proud of myself, for I jumped a huge hurdle today, by standing up for what I felt was in the best of my daughter. I believe that by being assertive and going into the meeting prepared and ready, knowing exactly what I want, helped me to be able to get what I wanted accomplished.
I was able to have the school agree that retaining Makenna was not the best idea, but rather, we needed to look for the real problem and address those problems, which I feel has something to do with her pragmatic language skills. So because I was composed, yet assertive, we were able to leave the meeting with an actual game plan, that will best help Makenna to be successful and it is all due to the fact that I was able to pull from within me, my inner strength, that Momma bear side, that is within all us Mommas and use this to help myself to stand up for my daughter and advocate for her, which I believe is owed to Payten and everything I have learned from parenting her, as well as prayer and the miracle that prayer can be. The reason I add prayer to the mix, is because right before the meeting, I said a prayer asking my Heavenly Father to help guide me as to what to say and I asked him to help me to fluently and eloquently say those things, all while being assertive, yet composed, which is exactly what happened. So again, I am thankful for the gift of prayer in my life and how it blesses me daily!
So like I said, I am glad that this busy day is over, not because it was a bad day, for in all actuality it was a good day in many ways, but rather I am glad it is over because it was a crazy day. Now, before I go, I want to leave you all with some food for thought,
"Crap Factory
Are you a crap factory? And by that, I’m asking, do you manufacture your own unhappiness? All it takes to be in the crap producing business is to be pessimistic, negative and saturate your world with feelings of resentment and ill will. Oh yeah, don’t forget to tell everyone how bad things are and that you will never be satisfied. Being a crap producing factory is ...one of the easiest things in the world to accomplish.
A person becomes a crap factory by thinking crappy thoughts on a regular basis. If you habitually feel that everything is going to turn out bad, or that other people are getting what they do not deserve and you are not getting what you deserve, you’re not only stepping in crap, you’re producing it. "I will be happy when I get some sleep, when I make a more money, when I lose weight, or when my significant other helps out more". When you think and say things like this, you are creating pressure, stress, isolation, anger, frustration and what you're really saying is, "I will be UNHAPPY until these things happen..."
Crap factory describes what so many people do – they manufacture their own unhappiness. You are a factory of some sort. Every day you are either manufacturing something good or you are manufacturing crap. There are so many things in life that are out of your control that lead to unhappiness, it is silly to make the pile higher by producing your own brand of crap. A large proportion of the crap in the average person’s life is self-manufactured. If you don’t consciously decide what you produce at your factory each day, your environment and your past experience will determine it for you. Bad crap happens all the time to good people, just make sure you’re not adding to the pile by producing your own crap."
A friend of mine posted this on facebook, which she shared from a friend of hers, which I am unsure who that friend is, as am I unsure as to who the author is to this awesome food for thought, therefore, I can not give credit where credit is deserved, just know that I did not write this, I just thought it was worth sharing. The reason I share this food for thought with all of you, is for the mere fact, that I feel it goes quite well with what I always say in regards to perspective and how life is all about perspective. For I truly believe that in life, we have a choice as to whether we see good or bad and that whatever we choose to see, is what our life becomes. Which means that if we choose to only see bad, then our life will be crappy, but if we choose to only see good, then our life will be happy, but like this thought says, it is all up to us and what we choose to see. However, I know it is hard to see the good all the time, but if we really take these words to heart and we really try work on seeing the good that life has to offer, then we will be living a much happier life, which will then in return help to make the world a better place, etc. Therefore I leave this food for thought with you to ponder and think about and I say to all of you, thank you for your kindness, love and support, you all rock and I appreciate all of you. May you all have a good night and a great day!
No comments:
Post a Comment