Remaining hopeful that things will get better

Last Sunday, I explained that Sundays seem to be a day that trigger seizures for Payten and I felt strongly that it was due to Church attendance, because I believed it might have caused her to become too over stimulated with everyone and everything that went on while there. So, today was our first attempt at keeping Payten home from church to see if that would help her not have a seizure, or at least reduce the amount of seizures she was having on Sundays, because typically she would have three or four seizures each and every Sunday, at least that has been the case for a little while now. Well, I can say, keeping her home, did indeed help with her not having multiple seizures. However, she still had one seizure, which made her sleep most of the day, so to fully say that keeping her home from church solved the problem would not be true.

With that said, we still don't have a clear idea, for she started having seizures again last week, so the one she had today could have been because of that and the fact that we reduce her medication level, because of all the side effects it was causing her to have from being on such a high dose. Once we try the new medication and can get them somewhat under control again, we will have a better idea as to whether keeping her home from church helps or not. What we might have to do, is once we have these blasted seizures controlled, we keep Payten home one week, see how she does and then take her the following week and see if there is any significant changes. I guess for the time being it is going to be a game of trial and error with both medications and church attendance. Only time is going to tell if anything we do truly helps. Our main focus, always, is Payten and getting her better.

We did get her new medication this afternoon! Yay! I can not begin to tell you how excited I am that we have it, as well as surprised. I thought it would have taken a lot longer to get, because it is an extremely hard medication to acquire, one that many times you have to jump through hoops in order to get, especially if you do not have a certain seizure diagnosis, which Payten does not have, so I thought we would be fighting the insurance company for a little while. But blessings happen everyday and this just happened to be one of our many blessings of this day. I sincerely feel very blessed to have gotten this medication for Payten without having to advocate for my daughter. It makes my heart over flow with pure joy, for this I feel is going to be the miracle we are seeking and now that we have it we can start using it and see if it is indeed that miracle Payten is so desperately needing. I can not begin to tell you how it makes me feel to know that we are being watched over and receiving the things we need, we have been truly blessed to have a good insurance company who provides most everything Payten needs without question, it has been such a relief in our stressful life. The new medication, is Onfi, it is a newer seizure medication and we are going to be using that along with the Vimpat which Payten has been on for the past few months. The medication we are cutting out is the Keppra she has been on. Keppra is the medication she has been on for a few years now and so I guess after a few years, change is necessary. I pray that this new medication will do the trick and bring our beautiful Payten back to us.

It is so hard, for we were in such a good place for so long with Payten, that now that we are back in this crazy awful state, it really sucks! We went from discussing getting Payten a walker that we could use to practice walking in, to going back to working on sitting and standing again. This game of going back and forth, back and forth, really plays tricks on your mind and heart and I really hate it, but I better get use it now, for this is going to be my life with Payten. Even though she has had some set backs due to the seizures and  maybe her diagnosis, GTP Cyclohydrolase Deficiency, I am still hopeful that soon we will be back to that good place that we where just a few months ago, discussing walkers. However time will tell, for we are still in the dark as to whether this medication will help her. And if it does help and the seizures do get better, then the concern at that point will be, if she does not start progressing like she did before, is it her disease? And if so, then we know that most likely we will not ever get back to that good place again, but there is always hope and therefore, right now, I am only going to think happy thoughts and remain hopeful that this will be what she needs to come back to us and start preforming miracles again.

Even though today was somewhat hard for Payten, it was still an over all good day. After Church, I came home and my saint of a husband surprised me with an amazingly clean home. Seriously, it was so nice and clean, I wanted to cry, I was so happy. I could not believe that he could read the stress I was under and help me with the one thing I needed most. He seriously knows the way to my heart and I am truly blessed to have him as my husband. It was so nice because I was able to sit down and relax a little, before family came over for dinner. Typically, we do not do Sunday dinners with extended family, but this Sunday was different, for tomorrow is my Dad's 58th Birthday and so we wanted to do something to celebrate it.

Here are some pictures from the night,

I love Sunday's like this! I love coming together as a family and sitting around, having dinner and enjoying each others company, it warms my heart every time we do it. The only down fall to this night was when Payten fell off of Grandpa's lap and hit her head really hard which might leave her having a black eye tomorrow. Let me just say, it was not Grandpa's fault, Payten is hard to hold sometimes, especially if you are not use to holding her, so unfortunately sometimes accidents happen while holding Payten, and tonight was one of those nights. Poor Grandpa! He felt really bad and so did Payten. You could tell it hurt her pretty badly from the way she cried, but I am sincerely praying that she does not wake up with a black eye tomorrow. Other than accidents sometimes occurring on these nights, I truly love days like these, for I love my family so much and so anytime we get together is a good time in my book.

This weekend has been a very blessed weekend for me. Yesterday, I was able to get a much needed reprieve away from my house with my daughter Makenna and today, I was able to go to church and be spiritually fed as well as rejuvenated and  ready for the coming week. Then I came home to a clean house and we ended the night with family and getting Payten's new medication. Can we say AWESOME?!  I am very sad to have it all come to an end. I truly hope life continues to keep looking up for me and my family and that the relaxation I was able to get this weekend, will help me to get through this coming week a little better, for last week was kind of a nightmare. I want to thank you all for your prays, they are helping so much and we appreciate them more than you know. Good night and God bless each and everyone of you.