Wednesday, January 29, 2014

Payten's trip to Utah to see Dr. Katherin Swaboda and the things that were discussed.

Oh goodness, it has been far too long. I totally fell off the blogging ban wagon and it is all my fault. I was going through some pretty hard issues both physically, mentally and emotionally that left me numb to everything that surrounded me and to be quite honest, the furthest thing from my mind was blogging. So, I want to give my sincerest apologies for leaving my friends and family hanging/questioning, how the Merrill family was/is doing. Obviously, I am doing somewhat better or there would not be a blog post, but as I always strive to do, I am going to keep it real and say, that I am still struggling with some things, so like always, I ask that if you pray, please remember me in your prayers, I truly need them right now. As for everyone else in the family, they are all doing well, except for the fact that half of them are sick right now. Seriously, the past few months have been awful in regards to illness plaguing our home. We just seem to be catching everything under the sun, which is not normal for us, usually just Payten suffers, but right now, it seems to be all of us who are suffering and it really stinks! I need a break! Seriously!

 Right now, it is the flu. At first I thought Emmett, Zachary and Makenna had it, but it turns out that Makenna just had a little cold and now it is Emmett, Zachary and Payten who are suffering from the influenza bug. I am hoping that Joseph, Makenna and I can all escape this nasty bug, but my gut says that ain't happening! Unfortunately, I think we all are going to have our fair share of this awful bug and I am definitely not looking forward to my share of it. Unfortunately, this also means that Payten's first day of preschool, which was schedule for tomorrow, (Tuesday January 28th), will have to be postponed until next week, when she is hopefully better. I am praying that since she had her flu shot, this bout of the flu will not affect her as severely as it could, but I worry that it might land her in the hospital and if that happens, who knows when she will start preschool. I guess I have to agree with her teacher, when he said, Well, I guess Payten will start preschool someday, we just don't know when that day will be?! Ha! Let's hope it is next week! A part of me is a little happy about this postponement, because I can now have a little more time to prepare myself emotionally for her first day of school. Please, don't get me wrong, I am super excited for her to go to preschool, for I believe it is going to be a good learning and social experience for her, but I am also scared to death to send her somewhere that is out of my control, it truly worries me. If you can't tell, I am a little bit of a control freak, especially when it comes to my Payten and her care; therefore a little extra time to swallow all of this preschool stuff will be good for me. At least that is what I keep telling myself. I just pray it is a good experience for her and nothing too bad happens while she is out of my care.

For those of you who may not know, last week was the week we took Payten up to Utah to see the Neuroscientist Dr. Katherine Swaboda, who works for the University of Utah in the Neuroscience center. I had very mixed feelings regarding this appointment. First of all, I was excited, for I trust Payten's Neurologist, Dr. Jay Cook and I knew that he would not recommend a Doctor, especially one that is out of state, if he did not believe that she had something great to offer our family. However, I was a little worried, for I did not know what answers or suggestions we would receive, considering the appointment was scheduled for only one day. Really, what can you accomplish in one day?! Thankfully, we were very surprised and we were able to accomplish a lot in that one day and my trust in Dr. Cook was solidified and we received an abundance of information and recommendations on how to help Payten and also to help try and figure out what is FULLY causing all of her complications. We spent 7 hours with Dr. Swaboda and left the appointment feeling a little perplexed, as well as hopeful that we were going to begin a path that would lead us to answers that would possibly help to improve Payten's overall quality of life, which is our main goal for Payten. Now, please bare with me as I explain all the information that we received during our 7 hour visit, there is a lot of information and I do not want to leave anything out, rather, I want to leave all of you with as much information as I can; so again please bare with me as I go through it all.

First of all, we had no idea what we were going to be discussing at this appointment, all we knew is that Dr. Swaboda specialized in Neurological conditions such as GTP Cyclohydrolase Deficiency and that she had a great knowledge in children and the medication senimet, which is an adult medication that is used for Parkinson patients, however it is the main treatment for kids such as Payten, who suffer from Neurological movement disorders that affect the Neurotransmitters in the brain and so we figured that our main focus during this appointment, would be discussing Payten's dosage of senimet and what the Doctor's feelings were on how far we could go/take this certain drug without it being harmful to Payten, etc. And boy were we wrong! Well, sort of. A small portion of our appointment was focused on that, but the majority of it was focused on other things. Seriously, it was kind of overwhelming. Let me explain,  the first half of the appointment was spent discussing Payten's medical history and everything, I mean, literally everything that she has ever had done or gone through, etc. Once we were finished giving Payten's life story,  Dr. Swaboda examined Payten and while doing so, she pointed out every major to minor abnormality Payten had in regards to her body and it's features that would point to a genetic disorder of some kind. Dr. Swaboda did all of this while taking pictures and measurements, etc. so that she could share them/discuss them with a panel of Genetic Doctors that we works with to see if they have any conclusion as to what Payten might suffer from. Once Dr. Swaboda was finished pointing out everything that was wrong with our daughter, which was both interesting and hard to hear, she and a genetic counselor, sat us down and asked us, what our main purpose and goal was for this particular appointment? To which we responded that we just want to find answers, as well as solutions on how to better Payten's quality of life. Which is exactly what they wanted to hear, for they felt that was a manageable request.

After that, Dr. Swaboda proceeded to tell us that she feels that Payten has been misdiagnosed and that she does not believe that Payten suffers from GTP Cyclohydrolase Deficiency, hence us leaving the appointment a little perplexed! She went onto say, that clinically, the tests that have been done thus far, point to Payten  possibly having this Neurological disorder, GTPCD, but genetically, it has not been proven, therefore it is uncertain as to whether or not Payten truly has this disorder, of which we have been lead to believe she has had for a few years now. Honestly, I am not really surprised with any of this, for I knew that there had to be more to the puzzle, for Payten did not fit the mold of GTPCD, but no one could tell me what the other pieces were to the puzzle and now we finally have a doctor who is trying to figure that out for us.  Dr. Swaboda said that because this is such a new thing diagnostic wise, Doctors do not fully understand that you have to further the clinical study with a genetic test, which is totally understandable. However, it does put us back at square one which is, what does Payten have? Dr. Swaboda explained that her reason for feeling as though Payten does not have GTPCD, is because Payten is too severe. Most cases of GTPCD are not as severe as Payten and the majority of patients, do not present problems as early on as Payten, even in the most severe circumstances. Yes, kids with GTPCD suffer from a great deal of complications/problems, but not like Payten and typically they respond a lot better and a lot quicker to the senimet medication, of which Payten has not really responded to or rather has decreased in her response, which is not typical in cases of GTPCD, which is another thing we were misinformed about. But again, it is such a new diagnosis, that it is common for doctors to misinform their patients, for they too are learning.

So now, you are probably questioning, as did Joseph and I, where do we go from here? Well, I will tell you! After Dr. Swaboda observed Payten throughout the day and changed up Payten's senimet medication and examined her, she went on to discuss a list of procedures and test that she would like to see done for Payten and here is that list. As I go through this list, I will do my best to explain everything I can,  to the best of my ability, so that you may fully understand what all of this means/entails. So here it goes, first off, Dr. Swaboda would like to have another MRI done on Payten's brain. The reason being, she wants to see if there is a lot of difference between this MRI and her last MRI which was done about 2 years ago, for it might explain all of Payten's regression these past few months and the reason behind all of her seizures. Which I think is a really good idea, for if I was going off of my Mommy instinct, I believe this MRI is going to show a lot of changes and it is not going to be "good" changes either, but hopefully it will give us some answers. Dr. Swaboda would also like to have Dr. Cook preform a carbohydrate deficient transferrin study, what is this study/test? Carbohydrate Deficient Transferrin, is a laboratory test used to help detect heavy ethanol consumption, however, this test is not only used to detect recent heavy alcohol use which is most commonly associated with elevated CDT, it also is used to detect certain rare liver disorders, which can also increase the levels of CDT and that is what would be the cause if Payten did suffer from increased levels of CDT, for heaven knows I have not consumed any alcohol and Payten hasn't either, therefore it would have to be caused by something else. Dr. Swaboda said that it is unlikely that this would be something Payten had, but it is something that needs to be ruled out, therefore we will rule it out.

Then Dr. Swaboda suggested that we do Exome Sequencing. Exome Sequencing is, a highly complex test that is newly developed for the identification of changes in a patients DNA that are causative or related to their medical concerns. In contrast to current sequencing tests that analyze one gene or small groups of related genes at a time, the Whole Exome Sequencing test will analyze the exons or coding regions of thousands of genes simultaneously using next-generation sequencing techniques.

The exome refers to the portion of the human genome that contains functionally important sequences of DNA that direct the body to make proteins essential for the body to function properly. These regions of DNA are referred to as exons. There are approximately 180,000 exons in the human genome which represents about 3% of the genome. These 180,000 exons are arranged in about 22,000 genes. It is known that most of the errors that occur in DNA sequences that then lead to genetic disorders are located in the exons. Therefore, sequencing of the exome is thought to be an efficient method of analyzing a patients DNA to discover the genetic cause of diseases or disabilities. Additionally, the WES includes a mitochondrial genome screening. Mitochondria are structures within cells that convert the energy from food into a form that cells can use. Although most DNA is packaged in chromosomes within the nucleus, mitochondria also have a small amount of their own DNA. This genetic material is known as mitochondrial DNA or mtDNA. In humans, mitochondrial DNA represents a small fraction of the total DNA in cells. Many genetic conditions are related to changes in particular mitochondrial genes.

The principle of the test is to sequence nucleotide by nucleotide, the human exome of an individual to a depth of coverage necessary to build a consensus sequence with high accuracy. This consensus sequence is then compared to standards and references of what is normal in the population and the result is interpreted by board-certified laboratory directors and clinicians. By sequencing the exome of a patient and comparing it to normal reference sequence, variations in an individual's DNA sequence can be identified and related back to the individual's medical concerns in an effort to discover the cause of the medical disorder.

This information listed above was found on  the Baylor College of Medicine website, under the Medical Genetics Test Detail section. This is the most extensive Genetic test that can be preformed and Dr. Swaboda working on getting insurance's approval as we speak. While we were there, they drew all of our blood, meaning Joseph, Payten and Mines blood, to use for this test. They are also going to do DNA Banking with our blood samples, meaning that if they need more blood for more test, they will be able to take from those samples, instead of having to draw our blood again. Pretty cool, huh?! If everything goes smoothly and the insurance approves it in a timely manner, the test should take about six months, however in most cases it takes up to a year or more to receive results, so it is going to be a long time before to know what this test will show and there is a possibility that it will come back non conclusive, but that is a risk we are willing to take. However we are hoping that it will show us the answers we are seeking, I just wish it did not take so long! I just have to keep repeating to myself, Patience is a virtue!!!! LOL. Then Dr. Swaboda listed several lab recommendations that she would like Dr. Cook to preform, which I can not remember what those are, as well as a renal ultra sound, which would be done either by a Urologist or a Nephrologist. A renal ultra sound is a noninvasive diagnostic imaging study to assess the kidneys, ureters and bladder. It is referred to as "jelly on the belly" testing that is a painless examination that is most commonly used for imaging modality for children with urinary system concerns.
Renal ultrasounds are commonly used in children to detect congenital abnormalities of the urinary system and they evaluate other urinary tract concerns and since Payten has some abnormal features in her vaginal area, Dr. Swaboda wanted to have this test preformed to make sure there was not further problems we were missing. This concludes the list of things Dr. Swaboda wanted to see done in Payten's behalf.

All in all, the appointment was a successful appointment, filled with a lot of information, as you just read. Now, you may be asking yourself this, What will any of this knowledge do? How will it change anything in regards to Payten? And believe me, Joseph and I have had these same questions and the answer is, we do not know. Honestly, we do not know if it will change anything, but what we do know, is that knowledge is power and if we want a chance at helping our daughter to the best of our ability, then we proceed with this list of suggested things and we do all we can to find out what Payten's Genetic Syndrome is, if there is one to be found or rather one that has a name. Because once we figure that out, then we can know if there is anything else we can do for our daughter. But as for now, we will continue to do what we are already doing and we will continue to hope that Payten's future will be bright and we will go forward knowing that we added another awesome Doctor to Payten's medical team, a Doctor who is ready to fight for our daughter! Now, before I go, I want to leave you with this,


Though Joseph and I are seeking answers/a diagnosis, we know that Payten is much more than that, we know that ultimately, she is a person, but not only that, she is a child of God, who we love dearly and all we want is to know is how we can best help her to fulfill the mission that she has been sent here to fulfill and that is why we continue to search. So please if you can continue to pray for our daughter and ask that we may find the answers we are so desperately seeking, we would be very appreciative to you. Thank you all for your love, concern and thoughts in Payten's behalf, we feel them and we appreciate them. May God continue to bless you all and may you all have a good night.


                                                                                                                                                        


 
 
 
 
 
 
 
 
 
 
 
 




 
 
 
 

Friday, January 10, 2014

Life! I don't like it at times!

Oh gosh! This week has been tedious and hard. I have come to find that I sometimes have a really hard time expressing my concerns/feelings, for fear of hurting other peoples feelings etc., but I also admire/appreciate/try to embrace honesty and being straight forward with people, to which you can imagine the struggle I have between the two. This morning was especially hard, for I had a real internal struggle with myself in regards to Nursing. Let me explain, since Nursing has started, as of last week, we have already had three Nurse's that we have had to meet, greet and train, which has been good in a sense for now we have three back up Nurses, but it has also been hard, especially due to the roller coaster ride that all of this uncertainty, meshing of different personalities and having to go through the different training's for each Nurse, puts you, as a parent, through. For you need/welcome the help, but you also, are trying to do what is best for your child, in finding the right person for them. But only that, you ultimately are wanting to find someone of whom is responsible, knowledgeable, quick on their feet and who you can welcome into your home, who can become that "new" member of your family, because honestly, that is what they become or at least that is what they should become!

 Now with that being said, two of the three Nurses we met this past week, were prefect matches, meaning they connected well with Payten and our family and fit most, if not all the other criteria. Unfortunately, the one Nurse that did not "fit" (in lack of a better term, due to not wanting to go into full detail of all the problems, etc.), so well with Payten or our family, was the only Nurse whose  schedule/availability worked with ours and being that it was "that" Nurse, it was really hard to know what to do, for we do need the help and  I really do not want to be the family that is difficult to please, but I also want to do right by my daughter and make sure her needs are top priority/met. Please do not misunderstand me, this Nurse was really kind and intelligent, rather one of the major problems was that she just lacked that motherly love and interaction, that I was looking for, for my Payten, hence the internal struggle I was having with myself in regards to doing what was best for my daughter and not hurting any one's feelings this morning.

Fortunately, after much thought, prayer and talking with a good friend and Joseph and some other family members, I decided to put all my fears and worries aside, step out of my comfort zone and call the company and tell them my feelings, etc. Surprisingly, it went better than expected, they asked if I would be willing to give them the opportunity to talk with this Nurse, explain what we needed/expected her to improve upon and see if things got better from there? I told them, Yes, that I was willing to give her a second chance. To which they were very happy and grateful to hear. Now, my question is, Am I being too nice, should I have not given her a second chance? I mean, there were other issues than just interacting with Payten, that bothered me, so should I have just given her the boot? I guess I am just a strong believer in giving someone the benefit of the doubt and allowing second chances, for everyone has a bad day every now and then, right?! Gosh!, this is so hard for me, I hate having to go through all of this, however, it is good for me, for I am learning to be more assertive, yet respectful/honest. It really is causing me to come out of my comfort zone and grow a little and I know that, that is truly the only way we can grow; therefore I suppose I need to be thankful for this experience, even if it is hard. I just wish that finding a good Nurse, that fit well with our family, etc. would be a much easier a task than it has been. Really?!, are we that hard to get along with or please?! Ahhhh! If only life could be easier at times! Hahaha! Honestly,  if you are reading this and have any insight or wise words of encouragement, please, please feel free to comment! I would greatly appreciate any advice one might have in regards to this matter.

On a better note, 2014 seems to be shaping up to be a good year thus far. Things seem to be falling nicely into place for Payten and our trip to Utah. And after that trip, I am venturing out of my comfort zone again and relinquishing control and allowing Payten to go to Preschool. Oh goodness! I am so nervous and scared, yet excited. I truly believe this will be a good step for Payten and I am happy that she is getting this opportunity, even if it scares the crap out of me! So, on January 27th, I will have another child attending school! I just hope that are kind to her. Gosh, why is this year determined to see me grow?! It is good, it is good! If I keep repeating that, I might just believe it! Hahaha! Honestly, it could be worse, therefore I really have no complaints, for I am blessed beyond belief!  Thanks for listening and as always, much love to you all and happy adventures!

Sunday, January 5, 2014

Winter break has finally come to an end! (Insert sad face here)

Winter break has come to an end and I am sad to see it go, for it has been fun seeing the kids enjoy each other and play so well together. I believe that Emmett and Payten are going to be sadder than I am, for they have truly enjoyed the extra playmates and attention. Here is a video from Friday, that I was able to capture between Zachary and Payten. Make sure you watch Payten's facial expressions, for they truly show the love she feels towards and from her brother. This video melts my heart each time I watch it!

video

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!

Friday, January 3, 2014

Christmas and New Years!

Okay, I am going to try this again! I say again, because last night I started a blog post for the New Year and I got half way through only to be interrupted so many times that I had to stop and just go to bed. For by the time the interruptions were settled, I could not keep my eyes opened to finish the post, so rather than struggling to finish, I went to bed instead. Now, here I am starting again, for I am not one who really can come back and finish a post half way through, I tend to always start all over again; I guess it is just one of my many quirks that I have. Wow! Seriously, I can not believe it is already 2014, it is insane to think about! I literally am still trying to wrap my head around the fact that a couple of days ago we rang in a New Year, which means we closed one of our chapters to our book of life and opened a new one. How crazy is that?! I truly believe that as you get older, time goes quicker, for I feel that time keeps slipping by, faster and faster, especially the harder I try to hold on to it.

However, with that being said, I am very excited for the New Year, as am I always, for with a New Year, comes a hope of brighter things and the excitement of a new adventure filled with endless possibilities and the new found ambition we all seem to find in regards to setting new goals and striving to keep those goals and so because of that, I am truly excited to see what 2014 has in store for me and my family. But, before I get into our plans/aspirations of 2014, I would like to say, Happy Belated Christmas! I sincerely hope that you all had a lovely Christmas, surrounded with the people that you love and I would like to share our Christmas and all the fun things that happened in the Merrill home. Especially since I have not been on here to blog lately, which I am sorry about, my life got a little out of control and I needed to take some time off. Our home was hit with a plague of illness that prevented me from doing much of anything, for I was so sick and exhausted from it all, that I had to put blogging on the back burner and focus on getting myself and my family better. Thankfully, I can honestly say that I am back and ready to take to blogging again, for we are all feeling better! Hallelujah!

Now that I explained the reason for my absence, let me share a little bit about our Christmas. Here it goes, our Christmas this year was a little strange, first of all because of the plague that hit and second of all because it did not go exactly as planned. Let me explain, Christmas Eve was not as enjoyable as it has been in the past, due to sickness and Payten feeling miserable. At one point in the night, she spiked a fever of,


104.1, which left us worried and wondering if we were going to end up spending Christmas in the hospital. Thankfully we were able to get the fever down and keep it down, which meant that we did not have to go to the hospital. Yay for blessings! But you can now imagine from this knowledge, just how fun our night went, for anyone running a temperature this high, is going to be completely and totally miserable and therefore, is going to make sure everyone around them knows just how miserable they are, especially a child, which is exactly what happened. Luckily for us, it did not take long to get Payten comfortable again, that is once we figured out what the problem was exactly. Once we resolved that problem, our night went a little better and we were able to accomplish everything that we needed to accomplish for the next day.

Unfortunately, due to the lack of sleep from all of the pervious nights events, we completely over slept our Christmas morning and therefore had to postpone it until the afternoon, considering we had to be to Grandma and Grandpa Greene's house by 10am for brunch and we did not wake up until 8am! Thankfully, the news of postponing our gift opening until the afternoon went better than expected, for the kids did not complain one bit about having to wait, rather they seemed pretty content with waiting till after we got home from Grandma and Grandpa's house to open their presents, which was very surprising to me. However, we did take time out before leaving to Grandma and Grandpa's house,  to see what "Santa" brought everyone and open all of the stockings, which I believe helped in the "waiting to open all our other presents" news. Here is a picture of the kids, right before we allowed them to go down the hallway to see what Santa had brought them,



Aren't they cute?! Unfortunately, Payten was still not feeling so hot and therefore slept through all the morning festivities. Which made me realize that by us sleeping in and causing "our" Christmas to be postponed till the afternoon, was in actuality, great blessing in the disguise, for it gave Payten time to feel a little better and to wake up, so that we all could enjoy our Christmas together as a family. So, you could say that our Christmas started off a little rocky, but it ended beautifully and I could not have asked for a better day. Here are some pictures from the day,





















As you can see from all of the pictures, our children were beyond spoiled and we truly did have a beautiful day surrounded by love and laughter and what more could you ask for on Christmas?! This truly is a Christmas we will remember in our hearts for years to come. That night, I retired to my bed feeling overwhelmed for all the many blessings in which I was thankful for.

Okay, now that Christmas was reported on, I will move onto New Years Eve, etc. I am happy to report that by the time New Years rolled around, the plague that had hit our family was gone and we were all feeling better, which meant we could ring in the New Year with a bang and that is exactly what we did! The kids wanted to have a New Years party with their best friends and that is exactly what they did! We invited their good friends, The Schad's over for a sleepover/New Years party and while the kids played outside, etc. Joseph, I and my sister and her husband, as well as one of our friends, played a mean game of Monopoly, of which Joseph came out on top. After the games, etc., we went out back and set off fireworks. Once our fireworks show was over, we came in and got our cups ready for our traditional News Years Eve toast and we counted down the New Year! After we clinked our cups together, the boys, meaning Zachary and his friends, Jaxton and Ryker, formed a Conga line and went out front, going up and down the street, screaming Happy New Year! To say the kids had a great time would be an understatement! Here is a picture of all the kids, right before we clinked cups and rang in the New Year,

Isn't this such a cute picture?! What a fun memory it will be for all of them to look back upon and remember the time they rang in 2014 together. I am so happy that I was able to capture this moment and I am even more happy that Payten was apart of it, for this will be a picture that we will cherish forever, especially during the years after she is gone. Such a tender mercy this will be.

As I sit here and ponder what this New Year will bring to my family and I, I can not help but reminisce what 2013 brought us, which was many ups and downs, which I believe is what makes for a really great year, for not only do you have moments filled with blessings, but you also are given opportunities of growth, which end up being some of your greatest blessings, that end up being some of the most joyful, if that makes any sense. So here goes, below you will find a highlight of 2013,

 First off, Payten had her trach removed!
 
 Zachary won first place in his Pinewood Derby!
 
 Zachary turned 10!
 
 Payten started making great strides towards walking!
 
 Payten received a new Orthotic garment called the DMO, which helped enable her to use her muscles better.
 
 Joseph and I celebrated 11 yrs. of marriage!
 
 Zachary started and successfully graduated from OT!
 
 Payten received a pair of AFO's, hence the great strides towards walking!
 
 First time ever that Payten was able to experience the beach and deep her feet in the water!
This picture makes me cry every time I see it.
 
 First time the kids got to go to the San Diego Zoo!
 
 Makenna's first time at the beach!
 
 Our First family Vacation in about 7 yrs. and we went to Disneyland!
 
 Zachary being silly!
 
 Zachary after his spinal tap, which affirmed that he does not suffer from GTP Cyclohydrolase, like Payten does, phew!
 
 One of Payten's many hospitalizations!
 
 Emmett turned 2!
 
 Emmett with his birthday money!
 
Payten's sleep study, that came back normal!
 
Payten turned 5!
 
Payten had her trach reinserted.
 
 
And last, but certainly not least, Makenna turned 8 and chose to be baptized!
 
 
Now, in all honesty, after looking through the events of 2013, how could I not feel extremely blessed and grateful?! It seriously was an amazing year, that had moments of heart break and as well as joy and it will be a year that will be remembered forever! So now you can understand little as to why I am sad to close that chapter of my life, yet excited to open a new chapter filled with many possibilities! 2014, should be a good year, at least I hope. First of all, we will be starting off the year seeing the specialist for Payten, who is in Utah, Dr. Swabooda, on the 23rd of January and we are hopeful that she will have some answers/suggestions on how to help better Payten's quality of life. Also, nursing has FINALLY been set up and with a new company too, which should be nice! Finally we will get some much needed help, which will help to relieve some of the stress Joseph and I are both under. Now after these two things, who knows what 2014 will have in store; all I can say is we are super excited! Typically I am not one who sets New Years resolutions, but this year I am going to try it and here are some of my resolutions,
 
1) Slow down and enjoy life more
 
2) Find myself again! For the past 5 years, I have lost myself to the service of my daughter Payten and I need try and take time to figure out who I am, again, and learn what I like etc.
 
3) Drink more water!!!!
 
4) Eat more whole foods and less processed!
 
5) Live happily and do something each day that will bring me closer to my God!
 
I think these are realistic goals, that are simple enough to succeed at and therefore I am excited to see what I accomplish through mastering these goals! Here are some goals that the kids have set,
 
Zachary, he wants to write a book this year!
 
Makenna, she wants be become better at dance and focus on gaining a better relationship with her Heavenly Father!
 
Seriously, these are the goals they set, not me, them!!!! And I think they are pretty awesome goals if I do say so myself.
 
As for Emmett and Payten, I hope to have Emmett fully potty trained this year and I hope to see Payten back to making great strides towards walking. So, here's to a good year, filled with great and many possibilities! I pray we all may see the beauty in what this year has in store for us and that we all have a healthy and prosperous 2014! Much love to you all and God bless!



  

Friday, December 20, 2013

A Christmas Angel visited our home last night and left a gift that will never be forgotten!

Last night our family was the recipient of a very kind, genuine, act of service, that left us feeling, honored and loved, as well as feeling gratitude and humility for the bountiful gifts that were bestowed upon our family that night. But before I fully get into what we received last night and exactly what it meant to us, I wanted, no rather I needed to share this video with you all, for I felt strongly impressed/inspired to do so. It is a very touching video, that puts the True meaning of Christmas in a very simple, yet beautiful way. Here is that video:

 
Is this not one of the sweetest video's put out there to remind all of us what Christmas should really be about? After watching this sweet video yesterday morning, it got me thinking about where my heart truly falls during this season and I realized that like many others, I tend to fall victim to the commercialization of Christmas and trying to make it prefect and buy/find the prefect presents, etc. However, this video reminded me that, that is not what Christmas is about, rather Christmas is a feeling, Christmas is an action of love, kindness, charity, etc. Christmas is welcoming the Spirit of Christ into your life/heart and celebrating that welcoming. It reminded me of a quote from one of my most favorite Christmas stories, which states:
 
As I reflected upon these thoughts that this video conjured up inside me, as well as the thoughts that this quote brought into my mind, I remembered something that Joseph and I started shortly after Makenna was born, a tradition that did not last long, but one that should have. That tradition was taking a Christmas stocking, writing the Savior's name on it and then on Christmas Eve, we would each write a letter/birthday card to the Savior, stating what "gift" we wanted to give him, not a gift that could be bought, but a gift from the heart and once we finished our letter, we would place it in the stocking and Christmas morning, we would take out those letters we wrote and we would read them aloud and make a verbal agreement to our family and to our Savior Jesus Christ, that in the coming year we would fulfill that gift. Unfortunately, life got the better of us and things became busy after Payten was born and traditions and the Christmas spirit of some of those traditions, got shuffled to the side, as we tried to juggle everything that we needed to do/accomplish. And these thoughts made me want to bring these traditions back, so that our family would realize just what the Grinch realized, that Christmas doesn't come from a store, but rather it is a little bit more!

Then, last night, we received a knock on our door and when we opened it, we found these two gift bags sitting on our porch,


Filled with beautiful treasures and attached to one of the gift bags was this note,


 Which stated,
 
Dear Merrill's, We hope you enjoy this "Fancy Christmas Eve" gift. We have put together several things, including a new tradition to help make the night extra special! Of all the people we know, your family inspires us to live and love better and we wanted to give you a little something in return! We wish you a very Merry Christmas and much deserved peace in the coming year! 
 
 
At this point, tears were following down my face, for what sat in front of me was a sweet note and gesture that was written and given to our family out of love, not need. Now, here are the treasures that we found in the bags,
 

As we unwrapped each individual piece, yes, each candle was wrapped separately and the other things were in the bags, just covered with tissue paper, waiting to be found. As we unwrapped and found each piece, we quickly realized that they had given us the setting for a Fancy Christmas Eve dinner, which made me cry even harder and made Makenna squeal with joy, even louder, for in her words, She would feel as though she was a princess when we sat down for Christmas dinner! But it does not end there, we also found these wrapped up in the bags as well,


Zachary and Emmett received a $30 gift card to Khol's and Makenna and Payten, received a $30 gift card to Justice and Joseph and I received a gift card to Outback steakhouse for $25 and then a $10 gift card to Cold stone for dessert. To some, this may seem very little, but to us, it meant the world! Our kids were so excited to get these gift cards, they could not believe that there was someone kind enough to share their Christmas with them. And it reminded Joseph and I, that though we may feel like we only have each other, there are a lot more friends and people out there in the world, who love us than we realize and it truly humbled my heart to receive that much needed reminder that people do care and do love my family and I. The last treasure that we found amongst the bags, was a box with a note attached to it. Now, here is where I truly realized that this family was inspired to choose us to rendered this kind act of theirs. Here is a picture of the box and then a picture of the note:


Here is what the note said,
 
Dear Merrill's, In keeping with the true meaning of Christmas, we thought you might like to add this special new tradition to your Christmas celebration.
Every Christmas Eve, each member of the family writes down what their personal gift to Jesus Christ will be for that coming year. They then slip it into this special gift box and put it under the tree. On Christmas morning, the first gift to be opened is the gift box full of the family's special gifts for Jesus. As each person reads their gift aloud to the family it truly will help to bring the real reason of why we celebrate this special day into focus.
Our Christmas wish it that as you carry out this tradition year after year, it will help your family become closer to each other and most importantly, closer to your Savior Jesus Christ.
 
 
Now, honestly, how ironic is that?! Inspired?! I say so, for only that morning had I received the strong impression that we needed to restart a tradition that we had forgotten/shoved to the side and here comes this sweet, generous, kind and loving family, who gives us everything we need to restart this once implemented tradition and more. To say that my heart was not bursting at the seams, would be an understatement. I truly at that moment, knew that the Lord was there, watching over me and my family, letting us know that he did indeed love us and all he wanted was for us to love him. Humbled and Grateful is how I went to bed. I can not express enough thanks to this family, for reminding my family and I what Christmas is truly about. I pray that soon we will be able to pay it forward and return this sweet gesture to a family that we feel inspired to serve. There is good in this world and last night my family and I witness some of that good and it will be a gift that is never forgotten, this will be a Christmas that we will always remember and cherish in our hearts.
 
I sincerely pray that we may all take the time in our own lives, to reflect over the year and decipher what we did that was good and where we can make improvements, so that we may in the coming year, be that much better, that much more kinder, that much more charitable, etc. which will then help us to carry in our hearts the Spirit of Christ, which truly is the true spirit of Christmas. Wouldn't it be nice to feel Christmas all year round?! I think it would be! I am so humbled to know that I have so many people who love me and I appreciate all of your love and support towards my family. Thank you, all of you! You inspire me to be better. May we all go forth spreading the love in our hearts and the joy in our laughter. Good night my dear friends and God bless!