Isn't this just the sweetest thing you ever saw?! Zachary loves Payten so much and he is constantly making up songs to sing to her and she absolutely loves it, as well as the attention! This is an unbreakable bond between the two of them, that when Payten loses her fight to this progressive disease, I know it will not only be missed, especially by Zachary, but it will be a bond that is cherished forever. I love the close bonds that my children share between one another. I truly feel that I have been blessed with children who truly love one another and I do not attribute this love to anything Joseph or I have done, rather I truly believe it is in their nature to be that way with each other and I feel beyond lucky to have the kids I have.
This winter break has been a hard one for us in regards to Payten. She has been struggling with her health and it is taking it's toll on Joseph and I. Not because of the extra care that is required, but rather the worry and concern that comes with it and the fact that she just does not seem to be getting better. Let me explain, her symptoms, illness wise, are improving, but her overall functionality is getting worse. Payten cannot sit up anymore, rather she just topples over and lays on the ground, which would be fine, if that were not all she did, but that is all she does, she just lays there. She hardly ever rolls around or plays with toys anymore and when Joseph and I hold her, it is like we are holding a rag doll, for it feels as though Payten has no muscle tone. It truly is breaking our hearts and that is why we are looking forward to our appointment that is coming up in two weeks.
In two weeks we will be heading to Salt Lake City, Utah to meet with the world renowned Neuroscientist, Dr. Katherine Swoboda. We are hopeful that she will have some answers as to why Payten is struggling/behaving the way Payten is and that she will be able to give us ideas/suggestions on what we can do to best help our daughter. Joseph and Mines only worry is that we will travel all this way, spend hundreds of dollars, only to spend 15 minutes with this Doctor and have her tell us that there is nothing she can do or we spend an hour or so with her and have her give us some suggestions and tell us that she needs to see her in another 6 mos. Either scenario would be a nightmare, for the first would be a waste of time and money and we would leave feeling hopeless and the second would be frustrating for it is hard enough to get out there this time, especially financial wise, that it would be extremely hard to have to keep traveling out there. So we are crossing our fingers and praying, that neither of these scenarios happen and rather we go in and she has helpful tools and suggestions that she will be able to pass along to our Doctor here in Arizona, to do with us, that will best help Payten. So I am asking that if you pray, please pray for our Payten, that not only she may get better and overcome these tremendous obstacles, but that this knowledgeable Doctor in Utah, will have the answers we need to best help Payten live a quality life.
Though Payten really struggled today with being attentive and able to function, etc., we still had a great last day of winter break. Since it is the New Year, our Church schedule changed and instead of having Church at 12:30pm, which I hated, for I felt that it ate up our entire day, we now have Church at 9am and I am beyond excited, for now we will get another day of much needed family time, that will not feel as though it was interrupted with Church! LOL! Today, since it was the last day of winter break and all, we had planned on taking the kids to the park (after Church of course!) and enjoying some outdoor time as a family, but with Payten's struggles, etc., we were unable to take advantage of that idea. Instead we spent time together, talking, playing and discussing our design ideas for Zachary's pinewood derby car, that needs to be completed within the next week or so. We finally were able to come to an agreement, meaning Joseph and Zachary, on doing a rocket car design, which I believe will be awesome. Here is a picture I was able to capture of this family time we had together,
I love it! I love how Payten looks and how focused Joseph and Zachary are on looking at all the pinewood derby designs online. These are the moments that I cherish the most, for this is our family! This is not a staged moment, rather, this is reality, this is how you will find us most evenings and I love it! I especially love that Payten is in the middle of it all, all the time and why wouldn't she be?! She is a member of our family, but with her complications, etc., it could be so easy to leave her out, but Joseph and I made a promise to each other, that we would never allow that to happen and it has never happened, for if Payten can participate, then she participates and our kids are as on board with this as much as Joseph and I are and that makes my heart happy. I believe that this is why Payten has thrived for as long as she has, for she has felt nothing but love and love can preform miracles, Payten is living proof of that! Unfortunately, I have to get back to reality tomorrow, so I must end this blog post, for I have to start getting up early again, YUCK! That is another thing I am going to miss about winter break, sleeping in! My kids like their sleep, (they get that from there Momma) so you can imagine how nice these past few weeks have been, for me especially, for we all slept in til 8 or sometimes 9! It was heavenly! Oh well! It was nice while it lasted! Reality has to kick in at some point, right?! LOL! Anyways, I pray that you all have a nice week and a good night! Much love and God bless!
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