Summer of 2013

Wow! You are probably thinking four blog posts within days of each other!? Yep, I think that is a new record for me, oh well I try! Today I am taking advantage of the fact that it is a peaceful Sunday afternoon and I am at home with Payten while the others are at Church and since Payten is sleeping, I thought that it was as good a time as any to sit down and blog, so here goes....

School has now been back in session for a couple of weeks and with that comes the end of summer, which brings bitter sweet feelings. I think my daughter Makenna said it best, "Ugh! Why can't it still be summer! I never see you or Dad anymore, cause this School thing gets in the way!" Yes Makenna, yes it does! Unfortunately, school does get in the way of family time and therefore we have to be more creative with our time, so that we still are able to have quality family time, despite school and other obligations. Though Makenna is right about Summer being awesome and fun with all the time we get to spend together, she forgets that school is a necessary part of life and it brings good things with it too, such as structure, routine, and learning! Now, two of these three things I mentioned are what makes the end of Summer, beginning of School so appealing to me, routine and structure! My OCD side of me screams for routine and structure, and that, my friends, is why I say with the end of Summer and  the start of School brings mixed emotions, for I do miss all the time as a family, but I love the routine and structure that comes with the School year!

But with that said, I am truly sad for this particular Summer to be over. The Summer of 2013 will always be a special summer I believe for our entire family. This was the summer we were able to take a family vacation. Now some of you may think, really?! Isn't that what everyone does during the summer, family vacations?! Though, you are right, a lot of families do spend their summers vacationing, but for our family it was the first vacation in seven years and so that is why it is such a big deal and will be a Summer to remember!

This was a much needed trip for everyone, especially Payten. Don't get me wrong, I think everyone deserved this vacation, for it was long over due, but I say especially Payten, because her life is an hour glass of time, that is ticking away, with no real idea of when the sand will run out and the clock will stop. So we felt an urgent need to take this time to go on vacation, because the hour is close at hand and we did not want to say goodbye, feeling as though we had a "bucket list" of things that we never accomplished with our sweet Payter Tater. Though, that was one of the major factors behind this vacation, it was not the only factor. We also wanted to show our other children our appreciation for them by taking them on a fun filled adventure/vacation.

I don't think anyone can fully comprehend the sacrifice that is involved on everyone when there is a special needs child in the family. Our children have had to sacrifice so much, in order to allow Joseph and I the time that is needed in caring for our sweet Payten. Zachary and Makenna have had to sacrifice so much in their short lives. Such as, having to let go of the idea of having their Mom volunteer in their classrooms or go on field trips with them, etc. They have had to sacrifice extra-curricular activities, so that Payten could have the necessary therapies and other appointments that she needs to help better her life. They have had to sacrifice play dates and birthday parties, etc. in order to accommodate Payten and her needs and with all this sacrifice has come very little, if any, complaints on their end. They have been such troopers through all of this. They are so caring and understanding towards it all. I remember when Zachary was in kindergarten and they were having a field and he said to me, "Mom, I really wish that you could go with me, but I know Payten needs you more and therefore I understand and know that no matter what, you love me and that if things were different you would be there, but right now Payten needs you more than I do." This coming from a 5 yr. old's mouth, is incomprehensible, but it is true. These words have had to come out of my children's mouths more often than you think and though it is heart breaking at times to hear, it is also heartwarming to know deep down that your children are so understanding and forgiving and confident in the knowledge that  you love them. Joseph and I have been truly blessed with some awesome kids and therefore we wanted to give back to them some of the sacrifices they have given to us. This trip was truly a blessing for all involved.

It took a lot of effort on Joseph and Mines part and a lot of prayer. I worried up until the day we left, that somehow we would have to cancel the trip and break hearts, due to something going wrong, such as Payten being sick or car troubles, etc. I remember trying to get the kids excited for the trip and Zachary saying, "Makenna, don't get your hopes too high, it may not happen, we don't know that it is a sure thing until we get there." Now that statement is the story of our lives, we mean well in planning fun things to do, but many a times they are sacrificed due to the needs of Payten, whether it be illness or hospitalizations, many a times have we had to cancel a fun outing because of these things. And though I am accustom to this, it was still heart wrenching to hear these words leave my ten year old's mouth. So, after hearing him say that, it made this trip that much more of a priority then ever before and my prayers became that much more demanding in my pleads that everything would fall into place and that Payten would be well. And let me just say, my prayers were heard, everything fell into place perfectly and Payten was the healthiest she has been in awhile. This vacation was truly a gift from God.

We had such a great time! First we went to San Diego and stayed with Joseph's sister, Rebecca, in her lovely guest house. It was luxury living at it's best! It felt like our home away from home. We are truly grateful for their hospitality in letting us stay there. It was so fun for the kids to see their cousin's and play with them. The highlight of San Diego, was Coronado Island and it beach! The kid's loved the beach there! They had so much fun running and playing in the water, as well as building sandcastles in the sand. Payten loved the breezed and sunshine, she also loved the feel of the sand between her toes and the cool ocean water, that she was able to stand in. It truly was a dream come true. I remember as kid, loving the beach! I remember going with friends and family and playing in the water and building sandcastles, while around a bonn fire. I remember the joy it brought me, as well as the serenity and peace it brought my soul and I wanted to give those same memories and feelings to my kids, especially my Payten. Why Payten, because, Payten can not live on her own, Payten needs everything done for her and part of that is living. I don't mean just eating and breathing, I mean truly living and living life to the fullest! When I think of Payten, I think of the song, I hope you dance, by Lee Ann Womack, which goes like this,

I hope you never lose your sense of wonder, You get your fill to eat, but always keep that hunger, May you never take one single breath for granted, God forbid love ever leave you empty handed, I hope you still feel small when you stand beside the ocean, Whenever one door closes I hope one more opens, Promise me that you'll give faith a fighting chance, And when you get the choice to sit it out or dance,
I hope you Dance....I hope you Dance. I hope you never fear those mountains in the distance, Never settle for the path of least resistance, Livin' might mean takin' chances but they're worth takin',  Lovin' might be a mistake but it's worth makin', Don't let some hell bent heart leave you bitter, When you come close to sellin' out reconsider, Give the heavens above more than just a passing glance, And when you get the choice to sit it out or dance. I hope you dance.....I hope you dance.

Now this song is not necessarily for Payten, but rather it is for me! It helps me to remember that I am Payten's voice, her hands, her feet, her everything and I will dance for her! I will never have her sit out, I will always help her dance! And that is why it was especially important for me to have her experience the beach and all of it's wonders, because it will not be her fault if she does not see all that this life has to offer, but rather it will be my fault as her mother and I do not want to live with regrets after this sweet child leaves my arms, rather I want a heart filled with memories of the times she danced! And Payten dipping her feet in the Ocean, while her Daddy held her up will be a forever memory of a time when Payten danced!

Not only did we see the beach in San Diego, but we went to the Zoo while we were there too. That was an adventure in itself. Have you ever been to the San Diego Zoo? Well, if you have, then you know the hills throughout, which are not a big deal, until you are pushing a wheel chair that weighs 80lbs. and a child in it that adds another 40lbs and then another child hitching a ride on it that adds another 50lbs and a couple bags filled with diapers and food, etc. probably adding an additional 10lbs, up the massive hills, then it becomes HELL! LOL! Seriously, it was extremely difficult pushing Payten throughout the Zoo, but again it was worth every minute of memories made. We loved all the animals and shows that we were able to see there. It truly added to the experience of our vacation.

After we spent 5 days in San Diego, we set off for more fun filled adventures at the Happiest Place on Earth, Disneyland! Before I go any further in our experiences at Disneyland, I need to say thank you to my Mother and Father, for if it were not for their help, we would not have gone to Disneyland and been able to make the memories that we were able to make there, so to them we say thank you. Disneyland by far was the funniest part of the vacation, but why wouldn't it be, after all it is the Happiest Place on Earth?! We were able to receive the total Disney experience by staying at the California Grand Hotel and Resort which is a Disneyland Park Hotel and by ordering the Disneyland dining package, which included character breakfasts and lunches. Which in my opinion, was worth every penny! We loved the character dining, it was Emmett's favorite part of the whole trip! Food and cartoon character's, two of his favorite things! Payten loved it too, not the food, but she loved seeing and interacting with all the Characters, it was truly priceless to see.

Not only did we stay at a super nice hotel and get an awesome dining package, but because of Payten's health and physical needs, we were able to receive special accommodations and were given what is called the "Green Light" pass, which we were told is what they give to Make A Wish kids and with that pass we were able to go to the front of the line on every ride and we were given the chance to ride it again if we desired to do so. It was a Dream come true if I say so myself! My kids were in absolute heaven! We were able to ride every single ride at Disneyland and California Adventure at least once, if not more! Examples being, Zach road Star Tours 8 times and we rode Pirates 3 times and Winnie the Pooh 6 and the list goes on and on! Some of the favorites were, Star Tours, Space Mountain, Matterhorn (sp), Splash Mountain, Indiana Jones, Tea Cups, Pirates of the Caribbean, Soaring Over California, Cars Land, Grizzly Mountain and much more! Payten's favorites consisted of, Finding Nemo Submarine ride, Winnie the Pooh, Cars land racers, Monsters Inc., Ariel's under the sea adventure, Toy story Mania, It's a Small World, and so much more! It truly was a blast to watch my kids faces light up as they ran around with no care in the world, but what ride they would do next! It truly was a blessed 5 days of carefree wonder and if I could we would do it Monthly! But I'll take every seven years if that is all we can get! This trip helped put back a sense of joy and laughter that we had forgotten and rejuvenated our souls and I could not help but write it down so that if I ever do start to forget, I can come back and read about it.

This indeed will truly be a summer I will never forget! Time is a wheel, that is always in constant motion, moving along the way, and I do not want to be a person who looks back over theirs years with regret, wondering where their time was spent. Rather I want to fill my years with memories of things accomplished and life moments that were worth living, so that when the time comes and it will come all too soon, for Payten to leave my loving arms, that I will know without a shadow of a doubt, that I did  the best I could to fulfill a "buck list"of life's wonder-ments and helped my daughter dance! I hope that we all Dance throughout our life and have summers such as this to remember!

Just some thoughts, feelings and emotions, I have been having lately that I wanted to share.

For the past few weeks now, I have been having an internal struggle with myself on so many levels. I have been dealing with so much stress, that it has been hard to see the good in life and that is where the internal struggle has been. I have so many emotions going through my body, it is hard to not allow the negative ones to take over. My thoughts have been all over the place. Many of them keep going back to when Payten was a baby and the emotions I felt back then.  Those dark thoughts and fears keep creeping back in, but I need to remain strong and pray those demons away, for we have come so far.

I don't want to live in the past and I don't want to worry about the future, I want to be in the now, cherishing the moments of today. Though it is hard to not worry about tomorrow, the fear inside is so strong at times, that it is truly hard to not succumb to it. I remember sitting in the hospital, surrounded by strangers, crying my eyes out, while pouring my soul to my Heavenly Father, pleading to him to not take my daughter from me, because I was not ready or strong enough, not because I am fearful of death, for I do not fear death, I know this life is not the end all, I know there is life after death, rather my plea was  a selfish one, for I could not bare to stand saying goodbye to my child. No mother in this world wants to give up her child and at that moment I was just a Mom, pleading to her Father, asking for anything, but death. I told him that I would do anything, I would take any burden he threw at me, as long as he spared my daughter. I did not understand the impact of what I was asking for, nor did I care, but now I do and I think about that plead often and if I would have changed it, if I could have seen the future? I also I think about a question I was asked a while back by a friend, her question was, Do you regret that prayer? Do you regret that plead? My answer to both these thoughts/questions is simple, it is No.

As much as it pains me to watch my daughter at times suffer and struggle, I can honestly say, I do not regret her. I do not regret her life. For I would not be who I am today or be where I am today if it were not for my sweet Payten. She has done more teaching in her short life, than I have in my 30 plus years and for that I will be forever grateful.  Now with all these complications Payten is having, these emotions and thoughts, like I said previously, are all coming back to me and why wouldn't they? I am a Mother of four children, going about my daily life, doing the best I can, while watching one of my children go through undeniable, indescribable pain, still pleading with my Father in Heaven, while crying my eyes out. The difference is I am not pleading for him to spare my daughter's life, rather I am asking him to please remove this bitter cup from her,  I am begging him to end the suffering she is enduring, to relieve all pain she is feeling, and to ultimately allow these trials to be over. I am asking for the Father's will to be done.

What that will is, I do not know, but I will put my full trust in him that he will do what is best for my daughter and that is all I can do. If it means letting go and having to say goodbye to my daughter, then so be it, because all I desire is for my daughter to be freed from all this. But if he grants me days and years with my daughter, then he grants me days and years. And if those days and years are filled with pain and suffering, then I hope I gain an understanding that this is what the Lord deems fit for my child for the time being and that my family will learn and grow from all these experiences. For I ultimately know that eventually this Mother's plead will be heard and that the days and years will get better, I just don't know when those days and years will be. So for now, until those days and years come, I will pray, that the Father will  give me the strength to stand, the eyes to see the good, and the hope and faith  to endure through the darkest of hours back into the light.

Though I am not in as dark of a place as I was back then, when Payten was so small and frail, fighting to live,  I still have HUGE mountains to climb and huge mountains I will keep climbing! I will keep fighting and enduring for my Payten, until the day comes when I can no longer do so or until I no longer have to, whichever day comes first. I am bound and determined to live a life of quality with my Payten and enjoy the moments she gives me! Though my life is hard and though I cry often and feel lost and alone at times, I still love it and embrace it. It is through my faith and hope that I ultimately get by.

I share these thoughts we with you, not to boast of myself, or to receive your pity, rather I share them, so that you may have an understanding of who I am. I am a mother, but not only that, I am a mother of a special needs child, who places special needs on me and I am in need of special friends! I don't need friends who pity me or my family or my child. I need friends who will accept me and my life for what it is and be understanding,  compassionate and non judging. I need friends who are willing to listen and not talk, who allow me to cry on their shoulder and who serve me without being asked. I need true friends, who know I am the mother of a very special child, who places very special needs on me and I need special friends who can lend special help and care, who will know I am forever grateful to them, though I am not always there!

Thank you, all of you, who are there for me, whether it be by kind words, acts of service, thoughts or prayers, I feel your love and it helps me daily. You are a God send and I love you all. Thank you so very much, I wish there were better words to describe my gratitude. You are the best and Payten and I love you!

Emmett Joseph turned 2 yrs. old!

This little cutie patootie, handsome devil, whatever you want to call him, the list could go on and on, just turned 2 yrs old a few weeks ago. But since my life has been so crazy with Payten's health issues, I am just now finding the time to post about Emmett turning 2! Better late than never, right?! (The picture above is a picture of Emmett when he was still in the hospital. I believe he was 2 days old in it)

Here are a couple of pictures of when Emmett was four plus months, (sorry I really don't know how many months he was in either of these pictures, but they are so cute!)

Then here is he is at a year of age,

And now he just turned 2!!!!,

 

 

This boy has grown up to be one handsome little guy, but it has all happened so quickly, it makes my heart sad, for I want him to remain little forever. He is such a sweet, kind, love able kid, who is always happy and helping! I love him more than he will ever know. He may have been my oops baby, but boy was that the best oops ever! This kid is the best surprise that has ever happened to our family and I am so pleased to say he is mine!

 

For his Birthday, we had a small party with just my (Kim's) side of the family. Reason being, because my sister's birthday is two days before Emmett's and my brother's boys were going back for St. Lewis due to summer ending, so we did a combo birthday with Laura and Emmett and a good bye bash for Travis and Gideon. It was a lot of fun. Emmett enjoyed his own birthday cake and a few presents. Mainly he got clothes and his BIG gift was a potty! Now, you are probably thinking, Potty?! Really he got a potty for his birthday?! Yes he did! He is child number four and we already have tons of toys, etc. So we felt a potty would be a great gift and Emmett thought it was a great gift too! So score on our end! He did however get some toys, he got a few toy cars and he got a stuffed dinosaur named Roary and some little people toys, that are dressed as superheros! It may have been a small gathering and he may have only gotten a few things, but to him it was the BEST day ever and that is all that matters. Below are some pictures of Emmett enjoying himself at his party.

 

 

 

 

 

We bought Emmett a small, single size cake and he absolutely loved it! As you can tell from these pictures! He devoured the whole thing and then we took him outside and hosed him off, which he loved that too! Wish I would have gotten pictures of that part, oh well, maybe next time.

 

These next pictures are of Emmett enjoying some of his toys he got for his birthday,

 

 

Overall it was a great day of celebrating Emmett Joseph's Birthday! Here are my final words about this sweet little boy I call Emmett!,

 

 If I could describe Emmett in a few words they would be, Handsome, Rugged, Fierce, Determined, Stalwart, Robust, a little Timid at times, yet Super Outgoing, Strong Willed, Happy, Kind, Tender Hearted, Enthusiastic, Love able kid! Emmett loves to be outside, running and playing. He will climb just about anything. This kids is fearless at times. I am surprised he has not had a trip to the ER yet. Just wait, it will come and I will not be surprised when it does! His favorite things are Sips of Mom's Soda, (I know, I know, not good, but who can say no to that face?!), Reading books with Mom, Playing with Payten on the floor, Wrestling with the family, his stuffed animal Roary, Eating food, Cars, Trucks, Balls, Swinging, Running, Jumping, the list goes on and on! If it is fun, this kid loves it! He is a spit fire of energy, who keeps me on my toes, but I would not have it any other way! I love chasing this little boy, I could do it for the rest of my life and will! He is such a joy and our family is blessed to have him apart of it. I am thankful to my Father in Heaven daily for this little man. I am so grateful that I did not take permanent measures due to fear, before I conceived this little guy, for I do not know where I would be without him in my life. He has brought a sense of laughter and joy back to our home, that somehow faded over the years from dealing with so much stress. His smile is contagious and you can not help but be happy when you are with him. His energy is beyond belief! I seriously do not understand how his little body can hold so much energy, enthusiasm, and life in it! Thank you Emmett Joseph Merrill for choosing our family to join. We love you so very much! Happy 2nd Birthday!







Against all odds, against all logic, we still hope!

And sometimes against all odds, against all logic, we still HOPE! Even though at times I get discouraged and I think why bother with therapies, why bother with medications, they're not helping Payten. I try to remember that nothing is impossible and I search for that HOPE that burns inside me, that tells me that just maybe Payten will be the exception, just maybe she will defy all odds and she will walk, talk, eat by mouth, etc and that keeps me going. Hope! It is the Hope of not pretending troubles exist, but rather the Hope that they will not last forever, that hurts will be healed and difficulties overcome! It is hope that strengthens our faith and it is faith that will help us to see that there lies within us a source of strength and renewal that will lead us out of the darkness and into the light! Never, ever give up! There is always hope, and with that hope, nothing is impossible!

 

I wrote these words down last night as they came to my mind, not because I have mastered the concept of hope or that I no longer struggle with discouragement, but rather to help remind me that hope is still there and I have the strength within me to force the negativity out and allow the hope to shine through. These words saved me last night. I needed so desperately to have them impressed upon my mind. I needed this simple reminder, to never give up, because nothing is impossible with God. And I am so very thankful to my Father in Heaven for impressing upon me these words of encouragement and hope!

 

These past few months have been tedious and I have hit rock bottom a few times and that is hard when you have a family to care for and children who need you. Payten's health has not been the best lately. It seems as though her health is declining and it scares me as well as upsets me, for I feel like I am slowly losing my daughter and no Mother wants to think those thoughts. Though it has been hard to watch and hard to deal with, these above words are a reminder to me that, no matter what Payten is going through, she is still here, living life and therefore there is always hope for a better tomorrow, ultimately a brighter future. I can not give up, even though the odds are stacked against her and the Logic is telling us it is hopeless, it's not! I can't give in to the negativity, for Payten is still alive and that is a miracle in itself and therefore I will try (I say that liberally) to remain hopeful! Until her fight is over, I promise to not give up, rather I promise to be her anchor, to be her strength and her hope, because if I give up, then she will too and I can't allow that!

 

Let me back up a little bit, for those of you who do not follow me on facebook and therefore do not know fully what has been happening with Payten, I will explain. For about a month or maybe a little longer, Payten's seizure activity has worsened. It started out a few times a week and now it has increased to multiple times a day. The silver lining is that they are petite seizures and they only last a minute or less, but with that still comes the prolonged postictal state and that is where it becomes heart wrenching. That is what I struggle handling. I feel like she is asleep more than she is awake and that is hard, because I want my daughter. I want her up and playing and doing things, not sleeping! But because of her increased seizure activity, we are not getting our happy, playful Payten, rather we are getting a sleepy, in her own little world, Payten and that breaks my heart. We have increased her medications and we have been in contact with her Neurologist and the game plan is to stick out this last increased dosage of medication a little longer to see if it does or doesn't get better. He says that it sometimes gets worse before it gets better. Well isn't that the truth about most things?! You have to go through the refiners fire before you come out that beautiful diamond! So, I am learning patience and I am sticking it out, to see if it is just time that is needed and not another dosage increase in order to get seizures controlled. 

 

This is not the only thing that has changed in Payten's health, Payten's GTP Cyclohydrolase Deficiency has worsened according to her last Lumbar Puncture. Her Neurotransmitter levels are at an all time low and this tells us that for whatever reason, her medication is not working. The Neurologist is at a loss, because he is doing everything he knows how to do and he does not understand why it is not improving, so he referred us to see a Doctor in Salt Lake City, Utah, who is Nationally ranked as the number one Doctor in dealing with children and the medication Senimet. Senimet is an adult medication, but it is the only medication that will work in Payten's case, so it is an extremely delicate situation, for you can not get the dosage wrong, because you do not want to over dose, but you can not under dose or the disease/metabolic disorder will progress and worsen. The doctor feels that she would be the best person to tell us what our next step is in helping Payten. So not only have the increasing seizures been weighing on my mind, but the fact that my daughters diagnosis is worsening and we need to go see another doctor because our doctor does not know what else to do, extremely hard to swallow. Emotionally drained would be an understatement. Words can not express the pain I am feeling regarding all of this. But, I need to remain hopeful that this doctor in Salt Lake City, will be able to help and that there will be great things in store for our sweet Payter Tater! 

 

All of this though, is not what sent me over the edge, it is not the whole reason I hit rock bottom a few times. On top of all this, I have been dealing with my son Zachary too. The last time I was on here, I shared with all of you that Zachary has Sensory Processing Disorder and we have been further investigating this finding to fully make sure that this was what it was and not something else or something else on top of the SPD. Along with Payten's lumbar puncture, was a lumbar puncture for Zachary. We did them at the same time for scheduling purposes, as well as convenience. Zachary had the lumbar puncture so that we could rule out any question that Zachary could be suffering from the same thing as Payten, GTP Cyclohydrolase Deficiency and though the results were in our favor with that, they still were not the best results. The findings of the lumbar puncture showed that one of Zachary's neurotransmitters is low and therefore not functioning properly. When I look up the neurotransmitter that is low, the first thing that pops up is the diagnosis of GTP Cyclohydrolase Deficiency, but we know he does not have that, because in order to have that, all your neurotransmitters have to be low and malfunctioning, which his are not. So that is a plus, but it still comes with it's disadvantages and challenges and no parent wants their child to be faced with any difficulties, especially when it comes to behavior and learning and that is exactly what he will struggle with and it breaks my heart. 

 

There are things that we can do to help Zachary through this, there is a vitamin supplement called tryptophan that we can try with him and we will continue to take Zachary to Occupational Therapy and if needs be we will start Cognitive Therapy and maybe Vision Therapy. These things should help him to cope with this metabolic disorder, no it will not fully fix it, but it can help and that is all we want. So, like I said before, I have been dealing with this knowledge as well as Payten's knowledge and it has weighed heavily on my mind to the point of not being able to stand life and all that is entails, but I am coming through. I am starting to see the Hope and the blessings and I am getting stronger and more faithful in believing, that nothing is impossible as long as I have God. I can do this, my kids can do this and it will all be okay!

 

Not only have the beginning words to this post helped me to come through this with a better perspective, but remembering the accomplishments that Payten and Zachary are still achieving even though Logic says otherwise and odds are stacked against them, has helped tremendously too. Seeing them defy the odds sometimes, gives me the most hope of all and I believe that is a blessing from my Father in Heaven. It is my Heavenly Father's simple way of reminding me that even though it is a hard road they have ahead of them and even though it does not look promising at times, there is still hope of a better tomorrow, hope of a brighter future!  Some of these things they are achieving or for Payten working on are, 

 

Payten

Standing and taking steps on her own. Her steps may be few and far in between, but they are steps none the less and that gives me hope that one day she may walk to me on her own! (with the help of a walker of course!)

 

And though it may get tedious and feel like a waste of time, we still hold onto that hope that anything is possible and therefore we move forward and get things that will help her in obtaining these goals we have set for her. Things such as,

A DMO garment (Dynamic Movement Orthosis) which constricts her muscles and sends signals to them, that say, Hey we are here, use us! And since she has received this garment, her posture, her sitting, her standing, her arm and hand usage, etc. have all improved tremendously! Now, if I just gave up and said, Why bother, for it is hopeless?, we would not have moved forward and gotten this wonderful garment that has opened up worlds of possibility for my Payten.

Another piece of equipment we got, because we have hope is,

AFO's these little beauties are for Payten's feet and legs, to help her stand and eventually walk! Again we got these to improve Payten's overall function and believe me, if I have anything to say or do about it, my daughter WILL walk! That is my hope and therefore I am determined to do anything and everything I can do to get there! Screw the odds and logic! We will succeed if it is at all possible! And if it's not possible, that is okay, at least I know I did everything I could do!

We do all these therapies and we get all these pieces of equipment, etc. to ultimately empower our daughter and to help her live the fullest possible life she can, with little to no limitations! We push her, because we believe in her! We push her so she can enjoy life, enjoy her family, and live happy!

These are the pictures that keep me going! These are the pictures that keep the hope burning bright within me! These are what makes all the hard work and effort, that sometimes feels tedious and pointless, worth doing! I want quality for my Payten, not quantity!

Now for Zachary, here are some things he has been doing and some things he has accomplished by doing so,

Zachary has been in Occupational Therapy for a little over 6 months now and he has worked extremely hard and he has surpassed expectations in a short amount of time. His therapist said the other day, that he has gone the farthest in the program and so it has made her have to study up on it more. The farthest, that is awesomeness right there! If that doesn't give hope, then I don't know what would! And because of this therapy things have improved such as,

His writing! Zachary's writing has improved drastically, as well as his letter reversals. This picture is the first time since Zachary started OT, that he was able to write all his letter's without one single reversal. That is huge! Now does this mean that he will never have another letter reversal again? Does this mean that it is completely fixed? No, but what it does mean, is there is hope! There is hope that he can and will be able to over come this and that makes my heart happy.

Some other things that have gotten better are,

Zachary's strength, ability, coordination and confidence! All things that are important for a young boy such as Zachary to have! He can now do things he could not do before and he has the confidence to do them and the confidence try new things, which is also HUGE! Does this mean he will be the all star athlete at his school, no! But what it does mean, is he will have a chance to be and that helps me to remain hopeful!

One of my favorite sayings is, Where there is no struggle, there is no strength. I love this saying because it reminds me that there needs to be trials, tribulations, hardship, heartache, etc. in order to become strong, in order to learn and grow and so it makes it easier to bare and it makes it easier to see my children bare these things too, because ultimately I know that in the end, they will come out being one of the greatest diamonds this world has ever seen!

So, with all this being said, I am going to start anew and I am going to try to keep these inspiring, heartfelt, hopeful words in mind and I will try to stay strong and keep chugging along, in hopes of a better tomorrow. Thank you for your love and support for me and my family and for always helping wherever you can, this too has helped me to stay strong and hopeful! Always try to remember that nothing is impossible with God and that where there is no struggle, there is no strength! We all fight a tough battle, may we all endure it with faith and hope and the knowledge that all things are possible, especially if it is God's will!

Those of you who follow this blog and try to stay up on Payten and our family, I want to sincerely apologize for not being better about blogging. I want to write more often, but I find that I just do not have to time to always do so and so I blog when I have that overwhelming feel that I just can't keep it in any longer. So please bare with me! I promise that I will do better in keeping up on here. Stay tuned because soon I will be blogging about the positive, happy events that happened over the summer and I will be doing a post of back to school tributes to Zachary and Makenna, so keeping checking in because sometime in the near future I will have those up on the blog! Thank you again for all your love and support, it truly means to the world to our family!

 

In life there is always a storm before there is a rainbow!

Breathing, the definition of breathing is to inhale and exhale air naturally and freely, to be alive! What a beautiful thing breathing is! It is something that we don't really have to think about, it just happens. Therefore it is something that is taken for granted, because it comes so naturally for us. But what happens when it becomes unnatural for us? What happens when it doesn't flow freely? What then? Most people have never had to think about this, because most people have never struggled to get a breath. Most people have walked through life breathing naturally and freely whenever and however they feel it to be necessary. Unfortunately, our daughter Payten is one that has not been granted this luxury, rather she has struggled from the moment she took her first breath and so for her may always be a struggle.

Recently, Payten was decanulated, meaning she had her trach taken away. As much as it was a joyous moment in our lives, for it symbolized strength and growth and advancement in development, etc., it was also a scary moment because of what the trach was. Before Payten had her tracheotomy, she could hardly breathe. Every breath she took was a miracle because of how hard it was. She slept all the time because she exerted all of her energy towards breathing. Her heart rate was in the mid two hundreds because she was so labored in her breathing that it caused everything else to be labored. Therefore when she had her tracheotomy placed, it was a sense of relief because now we had assurance that our daughter could breathe, both freely and naturally (well naturally for her!). Even though it was scary at first to accept something so foreign as the trach was, it brought so much peace because our daughter could now LIVE and have energy for other things than just breathing. It opened doors of opportunity for her in ways nothing else could. Yes, it limited her in areas of life, but the pros out weighed the cons at this stage in her young life. So instead of us focusing on all the negatives, we focused on what it opened up for our child and the help it provided her. We focused on the blessings it gave.

There is so much involved when dealing with a trach. There is suctioning, oxygen requirements, trach changes, etc. and there is a lot of equipment that comes with it too. It can make it difficult to travel, but you get use to all of the extra things and details that come with it. You get into a groove and it becomes part of you. It becomes your normal and you start living as though this is how everyone else lives. Then your child starts to become bigger and stronger, able to breathe a little easier and you begin to question if the trach is necessary. Your child starts pulling it out all the time and fights you on putting it back in. You start developing a HATE for this little device, that use to be such a blessing, because now you are having to use all your time and energy into keeping it in! So you start hounding the Doctors and questioning them on if it is necessary or not? Until they finally decide, yeah, she should be fine with out it. And you are ecstatic because now your child can breathe on their own, your child can be like everyone else when it comes to breathing! You think about how easy it is going to be not having to suction all the time, not having to wake up during the night and put oxygen back on or hook the vent back up, not having so much to pack up just to go pick the other kids up from school, etc. You think about how awesome it is going to be to hear her voice and her cry and you think, ya! she is going to be able to go swimming and take baths, etc., but you forget one thing, you forget what it was like for her before the trach. You forget, that breathing was NEVER a natural thing. You forget how much help the trach actually gave.

I didn't fully understand what Payten's ENT Doctor meant when he said, You soon will miss the trach. I thought he was just giving me a hard time. But now I understand his words. At first, Payten did really well, no real struggle, she kept her O2 up and she seemed to be able to cough things up okay. It seemed to be easy peasy for her and I thought, WOW! this is awesome! My daughter is doing it! She can breathe! Yessss! But what I didn't realize was that she still had an open stoma, meaning her hole where her trach resided was still open, she could still breathe through it. Yes, it was harder to do, but she still had it there to use, which made breathing for her a little easier. Now a week has gone by, it has become a little harder and why wouldn't?! Breathing has never been easy, why would it be easy now? As the stoma/hole closes, Payten is having to work a little harder, she is having to learn to breathe on her own and for her that is still hard to do. Even though she is strong enough to do so, it is hard.

Let's think of it this way, let's think of bike riding and learning how to ride a bike. At first you can't just ride a bike, you have to grow, you have to development other abilities such crawling, walking, talking etc. before you can jump on a bike and go. Once you are big enough and strong enough, you still can't just hop on a bike and go! There is a process, you first have to have training wheels and even with training wheels it is scary and there are times you will fall. Then you become confident and strong with those training wheels on, to the point that you ride as well as someone without training wheels and you get to a point where you no longer need those training wheels or want those training wheels on! So you remove the training wheels and as bad as you want to just hop on that bike and go,  you can't!  Why? Why can't you? You are strong enough, you have been riding a bike for sometime now, why can't you just go and be great at it from the start? Why, because now you are having to do it on your own, now you have nothing helping you, now there is nothing but you keeping yourself up. You are having to learn how to balance and turn and keep the bike straight while peddling and that is hard! That takes time and practice, it doesn't just happen over night. That is where Payten is. We have taken her training wheels away and though she is strong enough and ready, it is still hard. It will be sometime before she is good at breathing on her own. It is going to take a lot of practice and support, but eventually she will get there.

Last night, was a night where I missed her trach! I missed everything it gave her! I missed being able to hook oxygen up to it, I missed being able to suction it, etc. Payten was struggling to keep her saturation's up and she needed oxygen, but Payten would not let us put oxygen on her. Payten is not use to having anything on her face, therefore she hates the oxygen mask and nose cannula's, but what other choice do we have when she is struggling like she this? None. We have no other choice but an oxygen mask or nasal cannula's and when she needs it, she needs it! So it was a HUGE struggle to keep her from tugging on these different things that we were trying to place on her face. A struggle Joseph and I were losing, but couldn't give in or up on! So we had to hold the oxygen mask there until she was asleep enough for us to place by it her and that still was not enough, we kept having to get up and adjust the mask according to where she had moved, etc. It was very tiring and hard, but we had no other choice, we had to do it for our daughter. I kept thinking to myself, oh gosh! She is not ready, she can not do this, we need the trach back in, but it was too late! The stoma has closed and it would now require surgery, which I am not willing to do, unless it is ABSOLUTELY necessary. All these thoughts and emotions sent this Momma into a huge break down/sobbing fest, thinking that I was a horrible mother, who had made a horrible mistake for her child and because of that mistake, that child was now suffering the consequences!

 I ultimately at that moment, forgot about the process. I forgot about how in life there is always a storm before there is a rainbow. I forgot that there is always struggle before there is strength. So even though she is struggling now, meaning she is needing oxygen at night and having a hard time handling her secretions, the time will come where she will not need this support, the time will come when she will no longer struggle. For she will have had enough time and practice that she will be able to breathe on her own! I just need to be patient and strong and helpful and supportive, while she is learning/going through this difficult process of breathing. I need to remember that it is okay that the trach is gone, I need to remember that she is strong enough to this, I need to remember that she just needs time to learn and that I am the one who has to help her through this learning process. I need to stand by her and hold oxygen up to her when she does not want it held up to her, etc. I have to be her rock right now while she still struggles to breathe without her training wheels, aka her trach!

Does it mean I may not sleep right now, yes. Does it mean I may lack energy, yes! Does it mean I may be an emotional wreck for a short time, yes! But in the end it will be worth it! In the end her breathing will be as natural as yours and mines breathing is! It is just going to take time and getting use to on her part and it is going to take a lot of faith and prayer on my part. Joseph and I might not like each for a little while, but in the end it will all be better. (I hope!!!!) The good things that I thought about at first, hearing her cries and her voice and being able to take her swimming and giving her bubble baths, etc. will come, but we have to go through the process. Step by step, line upon line, precept upon precept, it will come, I just have to be patient. I just have to have faith that my Father in Heaven knows what he is doing and that he is guiding us through this and watching over our sweet little Payten. I have to have faith that my decision to have the trach removed was right and that it will get better. I have to have faith in Payten and know that she is strong enough to do this!

Oh how hard that is! I am her Mom and I don't like to see her hurting or struggling. And it is even harder right now because I am tried and emotional and I want it to all be easy peasy and it's not, it soon will be, but right now, it's not and I hate that! I want my daughter to not have to struggle and she is. I want to take this burden from her and I can't. I want what most every other mother has, a child who can breathe easy and right now I don't! Eventually I will, but I want it now! I don't want to have to go through the process, but I have to and that is hard for me.  I have to have patience and that is hard as a Mom to have, but I am learning and growing and becoming more patient each day. Payten is helping me to learn this life lesson. She is teaching me to be strong, faithful and patient! Even though right now it is hard, I soon will see the rainbow! I am just having to go through the storm and as difficult as that may be, I have to keep in mind that it will all be worth it in the end! Please pray for me and my family that we can all make it through, happy, healthy, strong and a live!!!! (LOL!) I want to say, Thank you, all of you, for your love and support, it truly does help us during times like these! You are a blessing in our lives that we can not live without, thank you for that! Take care and God bless!                                          

Clarification regarding my last post!

After I posted my last post, I realized I didn't explain what has transpired, for those of you who do not follow me on facebook, instagram, etc. So here goes, Payten has been in the hospital since Tuesday, March 5, she went in due to high blood pressure and seizures, but she is leaving with a whole new look and less equipment. Usually hospital stays are no fun and we hate them, but this one has not been so bad! Yes, we have been worried about her having high blood pressure and more seizure and the fact that she has been super tired, but all in all it has been a very productive hospitalization. Since Wednesday, Payten has been off her ventilator and her blood gases have been perfect, yay! So, because we have found out that she no longer needs the vent, I have been pushing the issue of taking her trach out, because for so long I have been told that if it weren't for the vent, Payten would no longer have her trach. Well, today my nagging/wishing became a reality, at first they downsized her trach, then they talked about capping it off to see how she tolerated it, but when the ENT Dr. Mancuso came in to see her, he decided to skip all those steps and just jump to fully decanulation (complete removal of the trach)! Can we say ecstatic! Oh my gosh, I was crying and screaming yay all at once. I can not begin to tell you how this makes me feel and how excited I am for Payten's near future and the new possibilities it holds, because these events. I hope this clarifies any questions you might have had!