Updates

So after five months of waiting for results from KeKoa's genetic doctors, I called Monday and finally got some answers that I still have so many mixed emotions! I have been calling the genetic department  every week for the last month and have had no calls in return. I began to give up, thinking maybe they were just blowing me off like everyone else had seem to be doing! So I got the call and to be quite honest I was just expecting them to tell me everything came back normal so they dont know what to do from here because I have had other people tell me oh its just autism or my kid had the same issues and its just autism. Now I can not speak for them but I know that in my heart I knew this was not the case with him and I have always felt like in my heart that  there was more going on with Koa than just autism. So leading up to this, I was at this autism retreat a couple of weeks ago and I kept getting this feeling that the lord was using Koa to prepare us for a harder special needs child which I thought to myself no your just scared and then I had a dream two nights in a row of me talking for our little boy who is in a wheel chair, which who is to say that is not Koa! All I know is that  I felt peace after I had this dream the second night in a row and I read my blessing which states the lord will prepare you for the special spirits he will send to your home, what a beautiful promise and I know that the lord has a plan for my beautiful family! When I spoke to the genetics Doctor  my heart was pounding and she began to tell me that she was shocked they found what they found because normally with genetic testing everything is black or white not grey! They found that he was missing parts of the X chromosome on the long side, well yes that was a foreign language to me! She went on telling me that the Y chromosome comes from dad and there was nothing wrong there but the X comes from me and so they have to test me to see if it comes from me and if it does how will it affect my other children! If it does not come from me, then we have a long road ahead of us with Koa, she began to explain to me that this is very very rare and that they have not seen anything like this before, they are in an unknown area. Some of the chromosomes he is missing do not affect the brain which clearly his brain has been effected and that there are mutated genes  and BLAH she kept explaining things to me and honestly all I could think about was do I carry this! My heart hurt thinking did I do this to him and what about having other kids, Ive always seen us having a big family but maybe its not in the cards and how am I suppose to feel what am I suppose to do and I became numb! They told me about Duchenne Muscular Dystrophy which he may have it has to do with missing part of his x chromosome. So what I have read about it, its very rare 1 out 3,600 males get it and it has to do with there muscles in there whole body, it affects  their stomachs  and everything and most of them are in a wheel chair before the age of 10! We will know more after muscle biopsy and she told me that  they may have to document things as he grows just cause they dont know what there dealing with or what is going to happen. I feel like I have handled it pretty well, when I told Josh he was so so sweet asking me if I was ok and making me  know that nothing is my fault and that we know Koa knew what he was going to go through before he came to this earth. I honestly dont know where I would be with out him, I find my self randomly crying because of emotions that I dont even know what Im feeling. We went to the temple last night and I have never felt so much peace, I know the lord knows my heart and he is here holding my hand through all of this! Today we found out that Koa has to get glasses and I am nervous cause he hates when people touch his face, he wont wear hat or clothes for that matter! They told me his vision is pretty bad which that's why he sits close to the tv, or why he rubs his eyes all the time and could cause some of his melt downs and cause him not be able to hold his head up but she also suggested getting his equilibrium tested. I thought great so much more to add to my list and then I felt the holy ghost whisper to me Car be grateful you  have him and he has so much to teach you and your family! Im grateful for tender mercies from my savior on a daily basis. I decided today that instead of always getting frustrated and thinking of ahh one more thing to add to my list that it was time to live in the now and enjoy it! Im letting the lord control my life from now and if he wants me to have more children regardless if I'm the carrier or not I will! Josh and I are privileged to have children and we thank the lord for them every day special needs or not they are all gods children; they have more to teach us I think then sometimes we do them! If I have another special needs child we will be the ones who will be so lucky to have them and so will our children yes Im crazy but even knowing how hard they are to raise I feel the spirit in our home all the time, I can not put into words  how my heart feels about this matter but I would love as many children as the lord has to bless my family with. Im grateful the lord knows what he is doing! My heart is so full and I feel the lord strengthening my faith each and everyday! I do not know KeKoa's outcome or what is instore but I do know with the help of my savior and my wonderful husband that we will enjoy the journey we have ahead of us. I failed to mention how amazing my other two children are I know that my little Jayla and Kai were prepared in heaven to help Koa, they amaze me each and every day! Jayla is so loving and kind and always trying to help him, she always says its ok mom Koa has autism! He adores JeJa thats what he calls Jayla! Kai is always making us laugh and always has a smile on his face and is full of energy, him and Koa love to laugh togather! I am so grateful for all the wonderful people in my life!

insight on trials!

Jayla has been so excited to go to Las Vegas soon to see her cousin's and grandparents, its always hard to compete with grandparents right! Jayla loves to sing and act out movies! Kekoa has just had the sweetest spirit about him lately and he just loves his family so much it is so wonderful to see him like this! Kai is going to be walking soon and if we do not pay attention to him, he will make sure we know he is there by screaming or grunting! Josh just finished finals last week and then his big 29th birthday is coming up cant believe how time flies!So our trip to salt lake  went okay we found out Kekoa has asthma and are still waiting for chromosome test results! Genetics is waiting to decide where to go from here and the new neurologist feels the need to talk to all the other neurologist at primary children's to decide what needs to be done. Sometimes these appointments can be very depressing because you are hoping for advice and answers, which I have come to learn that they dont always have answers. Its funny how when we go to a doctor we expect so much from them right! We want answers, reassurance, and most of all a cure to fix what ever is going on, if only life was that easy and not as complicated. I feel as though we forgot they are human just like us, they do not have all the answers to every symptom or problem our bodies face. They have to go with the information they have, their training and sometimes personal instinct. We as patients put a lot of faith and trust in their hands and sometimes the out comes are not as great and we feel as though these doctor gods have let us down. I am learning that it is human nature to want things to be a quick easy fix, so that we dont have to suffer pain and heartache. I have chosen to try and remember when I feel this way of Christ when he is suffering in Gethsemane, he cries out to Heavenly father  to take the pain away and Im sure he felt like why are you not answering me have you forgotten me and then he digs down deep within his spirit an realizes but it not be my will but thine will be done!! We chose to come down to earth to take upon pain, heartache, happiness, triumph, disappointment and all the challenges that comes with this mortal journey. We were confident and had faith that this was a small price to pay to have eternal life right?! Then we go through these challenges or awful trials that have some purpose behind them whether it be for us to grow and learn from, or accepting the lords will! How quick are we to forget these things, yes its natural  and its ok to feel sorry for ourselves at times but its also important for us to remember we can not dwell on the things we can not change! I have struggled with why hasn't the lord answered my prayers; for example Kekoa's life I have prayed for answers and had faith that things would be answered an it has not happened! I have felt as though why should I keep praying for him to help kekoa or help the doctors to find things cause obviously he is not listening or doesn't want to answer my prayers!  Then I read my scriptures and I just realized this!!  I am not ready for him to answer my prayers! I think I am and I think I know whats best and I am wanting a quick fix because I dont want to see my boy suffer any more and guess what that is not my call to make! The lord will answer my prayers on his time table and he is giving me piece by piece  according to my faith and what he knows I can handle at this time! I know I am not ready for all of those answers and I know the lord has so very much to teach me and yes it hurts and yes its painful at times but I am so so very glade he is in control and not me! Patience is a hard thing to learn especially when you have a little one suffering and the family is suffering with him but kekoa is a warrior he is strong and that is why he has been given the challenges he has it is not my place to take them away but to help him get through them the best I can. I look at it like this say your child cheats on his math test and the teacher catches him and they call you  explain what happened and give you the choice of what to do, well you choose not to do anything at all but what do we as parents take away from our children by doing this. We do not give them the opportunity to learn from those choices that they make and that those choices have consequences. May not be the greatest example my point is that we can not take our kids trials away even though we would like to we have to help them learn and grow from them, I know the savior has taught me with each trial I look back and he knew I needed that trial to help my faith and testimony grow, to help me be a better person. I will never understand why my family is going through the trails we are and I do not need to know, but I do know through faith, prayer, and scripture we are closer than we ever have been. We have so many things to work on like balance, Family Home evening, relationships with our father and heaven and our families  but its all about baby steps! My father in heaven has never given up on me, even with all the doubts that I have faced and will continue you to face but I know and am committed to saying I will never ever give up on him, he knows whats best he see's the bigger picture! I can say that its amazing how little kids live so close to the spirit and how the littlest things make them happy and how excited they are to go to church and learn! We as parents should strive to be the same way and never forget its the little things in life that make it worth living!

Who am I

Have you ever asked the question who am I or what am I doing with my life? I remember in high school asking my self that question and always remembering the Young women theme I am daughter of god who loves me and I love him. I found a purpose in life and that was to make others Happy, I loved saying hi to everyone and trying to get to know everyone, and being involved in sports an dance and student council. I worked very hard to be the best athlete I could and loved the push to be better. After graduating from high school I felt some what lost and wasn't quite sure of who I was; I remember being scared to leave my parents and not being able to control things I think was one of the hard things I dealt with. I remember my eating disorder like it was yesterday the feelings and emotions, I can still feel now! I felt trapped, alone, empty, and powerless! I had no control of what was going on in my life and that scared me, plus I did not like the way I looked or felt in my own body. I hated admitting to the fact that I needed help! I didn't let me self feel emotions and when things happened to me that triggered emotions often times they were blown out of portion. The other thing with addiction is you feel like everyone around you is judging you and making comments about you, so you keep your self away from everyone trying to not let them in. I remember throwing up every time I ate or drank anything and there were nights were I felt so lonely I would hide in the pantry and stuff my face and then spend two hours in the bathroom throwing up and crying. I would put a picture of jesus in the bathroom above the toilet thinking that it would help me to stop what I was doing and well after I threw up it felt so so much worse knowing that I failed again! I had lost my whole identity because I let my addiction consume who I was! I was know longer smiley, happy go lucky, loud carlie, I was carlie who had an eating disorder and who was emotionally unstable! I thought to my self no one will ever want to marry someone like this and why would the lord ever want to give someone like me kids. I had people make comments like why dont you ever eat, or dont date her cause she throws up to make people feel sorry for her, or why would you want to be with someone who is emotionally unstable think of all the things your children would have to go through, and not only were these people I didnt know but some of them were people I loved and cared for! Imagine the pain and heartache I felt! I never thought I would see the day where I would be with out this horrible addiction! Baby steps they always say which is so much easier said then done! I started running cause I realized it helped relieve so much of the anger and pain I felt. Then I started the 12 step program by the church which I firmly believe helped give me a new life! Each week there was a step to work on and scriptures to read an study. and a place to write down all those terrible feelings! Also they met every Saturday, a group of women gathered to gather to share their addictions or triumphs and sometimes their faults and their failures! Growing up in the church I had always felt like you had to portray to everyone that you were perfect and if you showed your faults or weaknesses, or did not dress or talk a certain way that you were frowned upon! Now I see it differently, I remember my first time going to this and just feeling like wow everyone isn't perfect and we all have addictions, an every addiction is serious for the person that is going through it whether it be gossiping, watching bad television shows, alcohol, eating sugar and well you name it! The point is the only way to over come addiction is to first want to over come it and realize the only person that can help you do that is you and God! I finally learned the meaning of the atonement and the importance of it! Now I look back and see how far the lord has helped me come and now to this day I am still fighting to get my self back and become the person the lord wants me to become!  I was told this week by a doctor that a good thing to relieve stress is to write about it, all of it the good bad and the ugly! Since I have had Koa I have struggled with finding balance in life and figuring out who I am! I know I have lost my self in all of the medical,worrying and anxiety! People say oh take time for your self but they don't realize how hard it truly is! The voice saying in your head that is selfish of you, or is that fair to your kids and you have a child with special needs! Then they say let people watch him but then here comes the control of well I dont want to cause I dont know whats going to happen or if they are going to get mad at him, or talk to him in a way he dose not like and the list goes on and on! You may think Im over protective, worry wort, or control freak but have you ever had a child with special needs but wait wait if you say that then people say you cant use that as an excuse for everything or stop feeling sorry for your self and toughen up! An every where you go you get looks for the way hes acting and you get parenting advice from everyone or I have people say hes not autistic cause autistic kids dont act like that and hes just a sensitive kid! The list goes on and on! How do you not want to feel like crawling up in a hole and crying! There are days I wish I was bold and didn't care what other people would say back and I could just stand up to them and didn't have to feel like a little ant!I am learning to not want to always take about Koa and the struggles we go through on a daily basis! Im learning how to not dwell on things and how to be happy and positive again! I am learning that there is balance in all things and finding that will be hard but doesn't mean I have to give up! I am learning that I am and always will be a daughter of god! I know I was meant to be a mother and there are days were I think about how I miss being single and not having responsibility but then I am reminded when I hear the word mom how I would not change that for the world! I see my self in my children's eyes as fearless, loving, kind, funny, and beautiful no matter what the scale says. My kids love me for me, the good, bad and the ugly! That is why I will never give up on fighting my eating disorder, or the depression, or the negative thoughts and emotions that feel my head because I would never ever want them to give up! I want my kids to love them selves and with that being said I want to start loving my self so that I can teach them how important it is to love them selves. I know the lord saved my husband for me! When we were first married and I would puke after big meals I will never forget my husband coming in and holding my hair back and rubbing my back! He has always loved me through it all and dont ask me how but he has and he always is trying to help me stay positive and lift me up and to him I am eternally grateful! I make this promise to him and my kids I will never give up no matter how hard it gets and I will always try to strive to see the light at the end of the tunnel!

Pain and Tender Mercies!

So we have had quite the events! First off Ikaika has been having breathing issues since the beginning of January and every time we take him in they admit him and of course tell us he has croup. The last time they found a lump in his trachea and so they sent us to an ENT. who ordered a CT with contrast. It just so happens to be that we get those results on Wednesday and they told us everything was fine and they did not see the lump anymore. I had some concerns cause he has not been eating lately which is not like him at all and then he will not sleep at night cries most of the night and is not napping during the day. So they said they wouldn't worry to much about it and then I asked well what about all the heavy breathing from crawling and of course no answers. So last night we put him down for bed and an hour later we hear him in his room grasping for air and his face turns bright red his eyes are watering and he cant breathe! Back to the ER I go and well what do you know they tell me its croup at this point I think I was just fed up so I went off on them, because you cant tell me my child is getting croup every two weeks for the last two months!! So they admit him and tell me he has a very narrow air way so he has a hard time breathing but he dose have croup and they will scope him in the next four weeks but at this point he basically just gets croup alot! So so so frustrating and its so scary to watch your child struggle for air, so if it happens again I will just take him straight to primary children's hospital! I'm grateful for my amazing friend Salena who always comes to my rescue I don't know what Id do with out her. plus Koa loves her so she is like one of the only people he will some what let me leave him with. Also grateful for such amazing Neighbors, my sweet neighbor Mandy is always offering to help and bringing over pizza which I am entirely grateful for its so so hard not having family here at my beckon call! Then on Monday we had more depressing news with KeKoa!! So its so hard when clearly he has so so many things going on and they are finding random different issues every time but no concrete answers! We hear from the genetics doctor and alot of things have come back normal but alot of that can be his age but they found elevated Ketons in his urine and a bunch of random different elevated things in his blood and urine, which they could not tell me what that means and they want to re run the test. They also found out that Kekoa's bones are size of a 12-18 month old baby so his bones are very much so delayed in growth since he is almost three! The main thing with that is it doesn't matter if your skinny or big your bones for the most part always match your age, so with knowing this they dont really know what that could mean for him but there is a good chance he may grow more but at this rate and his age they dont know because of how delayed the bone growth is! They also are waiting on some chromosome tests which depending on those tests and what they find they may have to wait until he is three to do further testing so they can get more accurate information. Hearing this was very upsetting to me, because I know that my little boy is struggling and how do you expect him to learn mentally when he is in so much pain all of the time and I felt defeated and hopeless! It was like what the heck I know people look at him and think he looks fine but you dont see what I see or the daily struggles he goes through mentally and physically! I felt like a failure and I could not understand why dose this keep happening! I began to cry and I got down on my knees and pleaded with the lord! I asked him what I am not learning, what am I doing wrong, where do you want me to go am I suppose to let go and maybe I was fighting for something that isn't there and why is it I see all these things but they are not finding it! Please heavenly father I need you and I need you now, let me hear your voice and give me guidance. I could not stop crying and I remember reading the scripture in Jacob that talks about enduring to the end and basically not giving up! Its amazing how the lord can speak to us through the scriptures and I remembered a talk titled "the atonement covers all pain" by elder Kent F. Richards that my uncle Doug told me to read,  if you have not read it please take the time to do so! So first off we all at some point in our lives have experienced pain whether physical or emotional pain. Elder Richards says
Pain is a gauge of the healing process. It often teaches us patience. Perhaps that is why we use the term patient in referring to the sick.
I thought that was such an interesting comment because no matter what type of pain we experience we do learn patience in the healing process. I knew the lord was telling me be patient, things will be revealed piece by piece and I think back to what we knew when Koa was born to what we know which is so much more! So there again line upon line and I know that this is how it is going to be through Koa's life and I have to remind my self when I feel the pain of disappoint and defeat, that the lord reveals things on his time table and its for our benefit! To learn this and grow from it each time and I know it is a trial of my faith! I want to have unwavering faith and I know I can get there by baby steps and constant effort!
Elder Orson F. Whitney wrote: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”¹

As Nephi saw in vision, much of Christ’s mortal ministry was devoted to blessing and healing the sick with all kinds of maladies—physical, emotional, and spiritual. “And I beheld multitudes of people who were sick, and who were afflicted with all manner of diseases. … And they were healed by the power of the Lamb of God.”¹¹

Alma also prophesied that “he shall go forth, suffering pains and afflictions and temptations of every kind; and … he will take upon him the pains and the sicknesses of his people. …“That his bowels may be filled with mercy, … that he may know according to the flesh how to succor his people according to their infirmities.”

President Henry B. Eyring taught: “It will comfort us when we must wait in distress for the Savior’s promised relief that He knows, from experience, how to heal and help us. … And faith in that power will give us patience as we pray and work and wait for help. He could have known how to succor us simply by revelation, but He  to learn by His own personal experience.”This really speaks to my heart to know that my savior has truly felt all the pain that I have felt and will feel and that he knows exactly what I am going through, he is the person who understands, who will bare my burdens, who will lift me up and give me the encouragement I need to press forward! I realize through each trial how much I truly rely on my savior and know that it's ok to tell him I can't do it anymore and I know he will always be there for me. I know that every doctor's appointment or procedure I have gone through with Koa he was in that room holding my hand! I know that I need to make that constant effort to seek his guidance on everything, asking him is this procedure right for him at this time, is this doctor the right doctor for Koa. My savior knows all and he knows what is best for my child so he is the one I need to be asking for advice and guidance, This quote can explain how I feel in my heart!

As Elder Dallin H. Oaks has taught: “Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a healing’ cures our illness or lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us.”¹⁷ All that will come may be “clasped in the arms of Jesus.”¹⁸ All souls can be healed by His power. All pain can be soothed. In Him, we can “find rest unto [our] souls.”¹⁹ Our mortal circumstances may not immediately change, but our pain, worry, suffering, and fear can be swallowed up in His peace and healing balm.

I know if I live close to the spirit and place my life in his hands he will guide me to what I need to know and what I need to do! This is the hardest thing I have ever done but I have never been so grateful for a trial! I know that Koa is very special every doctor has told me and I know through time and faith things will happen and I do believe in miracle! Yes those miracles may not be my Koa being healed but I know they come in many forms of tender mercies sent to me from my heavenly father! Talking with Koa's pediatrician today I felt hope knowing that I just need to never give up and keep pushing and realize I am doing all I can and thats all I can do, give to my savior and always seek his guidance! We will be going to a new neurologist at primary Childrens hoping for more light and information and then seeing the immunologist as well!  I will press forward with faith and a steadfastness in my savior for through him I can do all things!

Primary children's visit a journey!

Where to begin! Josh's mom came to visit last week before we left for primary children's and it was so nice to have her here, we got to attend the adult session of stake conference and it was much needed. I felt like it was the lords way of trying to prepare me for my week spiritually and physically! So I left Jayla and Ikaika at home with Josh and my sweet friend Salena was kind enough to watch them all day until my mom got there. I am so grateful for wonderful family and friends! So when we got to primary children's KeKoa had his sweat test first thing which was so hard  to watch, they put these metal things of course with gauze on both of his arms to stimulate the sweat glands and then after 5 minutes they place foil and hot pads around his arms for thirty minutes and then they are suppose to wrap him in this heating blanket but he was fighting so bad they did not want him to throw up or have a seizure so they did not use the blanket. Well after doing this same thing twice they could not get him to sweat, so they have to repeat the test another time I come back or wait until he is three! Then we were off to genetic's can I just say that was the longest most overwhelming appoint I have ever been too! Well first off four doctors come into the room and they wanted full details of my pregnancy with Kekoa and his whole life story and medical history! Then they wanted to know my parents and Josh's parents and their siblings medical history. Also my cousins and Josh's cousins childrens medical history as well! So that took about two hours and then they go and talk with another doctor and he comes in and give me alot alot of information. He started measuring Koa's hands, feet, how far apart his eyes , his spine and so forth. He talked about me going to see a Neurologist at primary Children's because he believes Kekoa has a lot of brain issues and so forth. So because Koa has so much medical to deal with, they start in certain areas and get pieces of information and go from there! So he order lab work,bone density exam (just because Koa is very small for his age and his body structure is a little different they said that will tell them how his bones are growing and if they will continue to grow) and Spinal x rays! Im sure he said so so much more its seriously just so hard to remember it all and take it all in, after we left I just remember feeling so lost, my brain hurt and I was feeling discouraged! It was great to have my dad there and to hear his point of view on what they were saying because he has never been to doctor appoints with me and so I felt like it helped me alot to hear someone else take on what they were saying! After you go to doctor after doctor it sometimes is really hard to interupt what they are saying from what you are feeling! That night we had scripture study with my Aunt Claudia and Uncle Dirk which let me tell you the scriptures we read I knew were an answer to my prayers. Some people may never understand this but when you have a special needs child and you see them go through so much and you start fighting doctors for so long to help your child or be on your side for that matter its very hard to not get offended when people try and point out positive things your child is doing I know so weird right. Sometimes I just would feel as though people were trying to prove me wrong or tell me they had no idea what I was talking about because he seems great to me hes doing this and this just like a normal two year old AND i WOULD FEEL AS THOUGH I JUST WANTED TO PUNCH THEM IN FACE!!! As his mother I see him struggle daily and its hard and sometimes you just want people to say I see exactly what your talking about and Im sorry but he is a very cute boy, but my husband pointed out to me they see the worry on my face and the concern I have for my son so they think they are just trying to make me feel bad or feel of some hope , which I am learning and growing for this that people just want to help and give encouragement and I need to realize that and be better at letting things and comments roll off my back! SO anyways back to our scripture reading I was just feeling down in the dumps like nothing was going to improve and I think part of that was just feeling so overwhelmed at getting so so so much information! We read this scripture in 2Nephi 28:30 "For behold, thus saith the Lord God: I will give unto the children of men line upon line, precept upon precept, here a little and there a little: and blessed are those who hearken unto my precepts, and lend an ear unto my counsel, for they shall learn wisdom: for unto him that receiveth I will give more and from them that shall say we have enough from them shall be taken away even that which they have!
It was answer straight from heavenly father to my heart! Kekoa's whole life the lord has always given me a little bit of information that I needed to know at that time, for example before Kekoa was born the spirit bore witness to me that something would be wrong with my child but that I needed to have faith and trust in the lord! Now I did not know what is was at that time but I knew there was something wrong the week after he was born and when they were not finding things I remember crying out on my knees asking for guidance and I remember the words that were spoken to me by the spirit " he said this will be a life long process of medical problems for KeKoa and its ok it will help you grow and your family grow closer and KeKoa new before he choose to come down to earth that he would have these problems and he said I can do it heavenly father because of my parents and I know Koa choose Josh and I and the lord knew we needed him and our family needed him! Then a little more info came when he was diagnosed with autism and this is how it will be his whole life and I need to always remember the counsel the lord so eagerly waits to give me and especially that everything is line upon line and he will always give me the information he knows I need at that time. So as we went in for his endoscopy I prayed that my heart would be open to the information the lord awaited for me to hear!  Everything went well and we found out that KeKoa is having trouble with his bowels due to the functioning of his brain and there fore his body dose not know how to poop! So amazing to me how much the brain and muscles can control just like you can not fly a plane without a pilot! They found a lot of bad bacteria in his stomach so the doctor is going to have him take this medicine for a week every month to help kill the bad bacteria and the key is give Koa lots of miralax and if we have to an enema once a week! The abdominal distention comes from KeKoa swallowing to much air he knew you could swallow are but I guess we do but thats how and why people burp but koa does not understand that concept, so hopefully speech therapy can help with some of that but it just depends! Some of the blood work came back and it shows high levels of Lactic acid and Ammonia and it was accurate they know for sure because Koa was asleep when they took it. It can mean a number of things like a metabolic genetic disorder which is hard cause they cant do much for those I am told. So lactic acid is mainly produced in muscle cells and red blood cells. It forms when the body breaks down carbohydrates to use energy during times of low oxygen levels, and during intense exercise. Now with that being said it can mean that the body tissues are not getting enough oxygen which cause heart issues,liver and lung problems and can cause lactic acidosis and mitochondrial disease and we will know more about Kekoa's condition once we talk with the genetics doctor. Also I didnt know anything about Ammonia in the blood! So Ammonia is a compound produced by the intestinal bacteria and by cells in the body during the digestion of protein. It is a waste product that is normally transported to the liver,where it is converted into urea and gluetamine. So an elevated blood ammonia level occurs when the kidneys or liver are not working properly, allowing waste to remain in the bloodstream, which can be poisonous to your cells and it can effect your whole body! I feel like knowledge is power and Im learning so much and realizing how much pain Koa is truly in and how he is such a little fighter and I dont know about all of this its basically what Ive read and learned and I know the doctors are suppose to call with more info next week!! I am so grateful for this wonderful, hard, long journey and what a trial of faith it truly is. I have learned that I can not let doubt creep in because that is how satan gets a hold of me and plays tricks on my mind the key is to enjoy the journey and treasure the moments! I love my family with my whole heart and I am grateful beyond words for the love and support I get from all of my family, in laws, cousins, aunts, uncles, and grand parents and friends thank you all!

emotions and the superbowl

So I find it funny how a super bowl can bring so much emotions out! First off let me say I have always been a competitive person and I have always loved watching football especially watching my brothers play! I have never ever really had a favorite NFL team or really watched  a ton of NFL football but always went to all my brothers games, felt like I was with them every play! When I married my husband Josh I became a fan of the Seattle SeaHawks I grew a love and passion for watching them play! It's kind of silly in the grand skeem of things how serious I take the games, how a loss can be so devastating and a win can make you feel like you are on top of the world; or how when people talk bad about a player on your team how defensive you can become and lets be honest everyone defends there team you cant tell me other wise! Sometimes I feel like I can some what relate to Richard Sherman just because I feel like he probably says things he doesn't mean because he is acting out of passion and emotion which some people seem to forget that professional athletes and anyone Famous for that matter are just everyday people who yes should account for the actions but they are not perfect just like you and me! I feel like he is a great guy and yes he may appear cocky to some and confident to other. It just seems that people are always judging others when they do not even know the real person, they just know what the media makes them out to be which makes me realize how much I truly need to take a break from social media because most the time I feel like Satan uses this to get us discouraged, depressed, and even angry or at least I know I have felt all of these things from social media. I realized tonight why I love sports, when your watching your team play you forget about everything that's going on in your life like trials and you get immersed in the game! When your team scores you triumph, you feel that amazing feeling of accomplishment and hope! When your team is loosing you rally with them, give encouragement and sit on the edge of your seat anxiously waiting for there results! When they are defeated you feel the pain of discouragement, defeat and failure! Well lets just say I felt all of those feelings tonight! I realized which this sounds silly the Seahawks gave me an outlet to not think about all of the doctors appointments that I had to go to this week, or the non stop crying , messes to be cleaned, all of the expectations I have for my self that Im not meeting, the fact that Im not at the weight I want to be, or the mother I think I should be, wishing I could help my little Koa not hurt any more or get sick, or the fact that I wish I could take my kids to the park and had more time to spend one on one time with my Jayla and wishing for things to be normal! They gave me hope that things would be better and brighter tomorrow! So as I was pouting for better word because they lost and talking over and over about the would if's that could of happened I began to feel so depressed thinking of all the things that are going wrong and all the trials that seem to be never ending and keep coming our way, I got on my knees! I pored my heart out to the lord I realized that I have bottled so so many emotions and feelings up in the past year that it just took the seahawks loosing the super bowl for them to all come out! I know that the lord was just waiting for me to come clean with him about everything I have been feeling and continue to feel on a daily basis or how the fear of the unknown is always there. The lord can give me more hope than any sports game can through reading my scriptures and me taking the time to let him in! Sports are a great thing and I will always love them but at the end of the day its just a game! Thank you to my husband for helping me work through my thoughts and emotions, its really hard I feel like to work through those emotions and truly determine what we are feeling or why we are feeling that way! There is hope and I know if I just believe and stay positive through these hard times the lord will help me move mountains! Its been really hard to keep my head above water and not get depressed but Im so grateful for my husband for loving me through the good and the bad times, he is my rock and I am grateful for him everyday! I dont know how to explain everything I am feeling and I know this may all make no sense but I pray that I can keep getting better at working through my emotions! I hope that I can be the best mom and person that I can be! I hope I can find a love for my self and an enjoyment of all the little things in life! There is hope in all things and even though the seahawks lost I will never give up on them just like I know heavenly father will never give up on me no matter how many mistakes I make at the end of the day he will always love me and thats what is going to get me through this week!

The good and the bad!

So our sweet little Ikaika give us quite the scare on Sunday, he has been crawling more and we have noticed he uses a lot of energy and starts panting! He was in the hospital two weeks ago because of croup but he has not had any symptoms of croup since we went home from the hospital! So in the middle of the night Sunday we hear him struggling to breathe , he was flapping his arms and kicking his legs and really really struggling to breathe!! So I rushed him to the ER  where they gave him breathing treatments and steroids, they told me it was croup again which I did not believe them! So they took some x rays and they still saw the lump in his lungs and well I suggested maybe he has asthma so now we will be seeing an ENT this week and going from there, they are saying most likely need to scope him! We sure do love him and know that everything will be fine!

Well KeKoa has had quite the week lots of doctor apts, lots of melt downs, and also some good smiles! We met with Dr. Hancock who is a Hematologist/ oncologist and it was a long appt and a lot to take in. First off he explained that most children with cancer usually appear very sick and they do not get better but with that being said there are those cases where they dont see the cancer until its very strong and there are cases of Chronic Leukemia and they have only seen one child have that. He explained that he did not think KeKoa had cancer but he can not say that for sure until they go in do blood work and maybe take some bone marrow. He then discussed with  me about genetic disorder and metabolic genetic disorders. He pulled out his phone and called primary childrens Hospital which Koa has been on a waiting list for genetic testing they told us there were 300 kids in front of him, so dr, Hancock called and spoke the genetic's doctor and said I have being working for 30 years and I have only had two times in my career where I feel very strongly about a patient, and I have this two year old boy in my office whom I feel very strongly that he needs genetic testing done now because his little body is just withering away. To hear that was hard as a mother because lets be honest you know things are hard when your kids have health problems and sometimes you feel like you can be over exaggerating things or worrying to much but that made my heart ache to know that the fears I  have had are some what true! On the positive note I am so grateful we will be seeing the genetic's doctor on February 10th and start hopefully getting some more answer's. Next Thursday they will start more blood work and then he has a sweat test on February 10th to see if he may have cystic Fibrosis, which to be honest I am nervous about this test because they put things on him to make him sweat for two hours and with his little weak body I just hope he can handle that. I asked the doctors why they think he has it because I thought it had to do with his lungs which he doesnt seem to have problems with that but he gets infections all the time, gets croup and infections very very easily and lots of sinus issues. Cystic Fibrosis has to do with the cells and sometimes they get sticky and create thick mucus not just in the lungs but in your sinuses which is similar to one of Koa's symptoms! Today we went to the neurologist to find out the results from Koa's sleep study because he wakes up all night and randomly falls asleep through out the day! So we found out that his brain arouses 24 times in one hour because of muscles spasms and his body flinching or maybe possible seizures as well but that broke my heart that he is not getting sleep and that he is in a lot of pain and that his body is getting weaker and they need to take muscle biopsies. They are putting him on medicine to hopefully help his body relax while he sleeps! They found that all he acid levels in his body are way way way high and that he may carry an extra x chromosome but we will not know for sure until they start doing all the genetic testing. Most people that have an extra x chromosome have down syndrome handicap which KeKoa does not appear to be handicap but we will see what the lord has in store for our Koa and we pray for more answers. I guess as a mother I just hope they find away to help him, sometimes you think oh I would rather him have this certain thing so that they can treat it and help him besides something that they cant do much for. It is such a roller coaster of emotions and I pray that I am strong enough for Koa to help him through this life and what ever the lord has in store for him. I know its okay to cry and feel sorry for him and my self and the situation but then I have to pick my self up and be positive and live and enjoy the now and not worry about the future and all the things that could go wrong or happen! I know I have to rely on my family and the lord, have faith, surround my self with good positive things and reading my scriptures and anything spiritual and uplifting! Its learning to enjoy the little things for me and letting other things go like lets be honest my house will not always be clean but its important I love and enjoy children with the good and the bad!

He loves the fish tanks as the doctors office and it brings a huge smile to my face!

My beautiful Jayla is growing up so fast and it makes me want to cry, I wish I could slow down time! I finally got sometime to work on preschool with her when the boys both took a nap! It was so so so much fun and she loved it, her favorite part was getting to glue things! She is so so smart and always asking me if she can go to school or if I have her lunch packed for school! She also is quite the negotiator, every time its bed time she will ask for a drink, or kisses, or stories or prayers for the 3rd. And the other night when I asked her to fold her arms for prayers she said I will fold my arms when you give me back my toys ha ha what is she 16!  She loves to watch movies like her mom! She has been wanting to cook with me lately and I sure do love it today we made banana bread and it was so fun, whenever she spills something she says oh I got it and cleans it up!She always makes me smile and has the cutest little Voice! Im so grateful for my kids!

The Life of a Mom!

So I am actually excited to have started this blog not only for KeKoa but for my Family! I am going to be using this as a journal as I feel it will be easier for me to update and it just seems to help lift a weight off my shoulders! I hope I am not the only one that feels this way but last night my boys seem to be tag teaming on who will care next through the night! After waking up a total of 8 times through out the night I felt like hiding under my pillow and not moving ha ha terrible I know! Well Kekoa is like clock work and always wakes up at 6 a.m. sharp no matter how many times he woke up during the middle of the night or regardless of the bed time, so at 6 a.m. lets just say I wanted to run away and hide!! The morning starts with Koa sopping wet, which he has twisted kidneys and he has just been having a rough go, I mean he is constantly wetting through the diaper with in the hour he has gotten a new diaper,so we have to change his diaper at least four times through the night and if he wakes up which is often the only way to get him to stop screaming and go back to sleep is give him his sippy cup with propel or he wont go to sleep and SO BATH TIME IT IS!! Koa loves his baths he would stay in them all day if he could, he gets very upset if that water is not a certain temperature and he has to have all of his air planes and fishes in the bathtub with him! He loves to line them up on the tub and then push them onto the floor, so my floor is completely drenched with water and he gets very upset when we interrupt. Well because Koa was in the bathtub Jayla of course had to join him right! Also I was told it would be beneficial for Koa to have a set morning routine, and I am not good with set routines I just like to go with the flow and I get distracted very easily, so this will be good for me and a great challenge! So I guess bath time will be apart of this morning routine but its just the process of getting him out of the bathtub that will be a complete challenge! I am trying to have Jayla start picking out her own outfits which are hard when they dont always match but I want her to be able to make her own choices, which she is very persistent about making her own choices. The challenge I am having with Jayla is getting her to be able to go the bathroom with out me always helping her but I feel like its hard cause she likes the attention of me having to stop what I am doing to take her to the bathroom. So I decided I would reward her a coin every time she goes the bathroom by her self, she has this piggy bank that is a Disneyland piggy bank so she thinks every time she puts a coin in there its helping her save money so she can go to Disneyland which I do like that because it teaches her how to save money. So it was working for a while but now she waits until the last second to run to the bathroom so then she cant pull her pants down fast enough so yes accidents and more laundry for me hooray!! So now I am trying to figure out how to help her want to go potty by her self but make it on time and its so hard to get up set with her cause she looks at me bat's her eyes and says oh mom it was an accident ugh why are kids so cute sometimes when you just want to get mad at them! Breakfast was nice this morning though for once though, I decided to play the Mormon messages for the kids to watch on the iPad while we ate which they loved, although gets complicated at times because Koa only wants to watch the same two over and over again and has an emotional breakdown when its Jayla's turn to pick, so when things happen like this Koa gets violent he hits me alot and it use to be really hard not to want to hit him back but now it just makes me sad cause I know he just is frustrated and its sad to see him get that way, he will literally start biting me and not let go its pretty bad and hard to explain, I was bite about 8 to 9 times today! Kai is crawling every where which means more fun crazy chaos! Honestly though I love that he is moving he always makes me laugh cause he always has a smile on his face! He started this little evil laugh today that is to die for ha ha! He loves to be around his brother and sister, and he tries really hard to play with there toys which makes me laugh cause Jayla and Koa do not like at all! Jayla dose have a baby doll though that she named baby Kai which is so adorable to me, she made me fill a little bottle with milk so she could feed it and we gave it a binky and she loves to put him her baby doll to sleep I had to make her a bed! To be honest I never ever thought Jayla would do this with a baby doll because she has just never been interested in all the girly things and to say that I love that she is now showing interest would be an understatement! She asks me everyday if she can go to dance class and I love it, it makes my heart melt! So my phone calls with doctor's also took place today as well, I was a little frustrated with my pediatrician because he told me Kekoa has to be seen by the hematologist in rexburg which yes you would think that would be a good thing but the thing is its easier to have all of his specialists at Primary Childrens cause they can all work together instead of me having to repeat my self to a million doctors what the hematologist is doing or thinking and then getting them to communicate with each other is even ten times hard but right now I dont have much of an option, the only way for Koa to see a Hematologist at PCH is if the dr in rexburg believes he needs more advanced care and testing! Then trying to schedule his sweat test for cystic fibrosis is a Joke and don't ask me how they are even going to make that work on a two year old but somedays this stuff is just so frustrating on top of Koa not taking a nap because his blanket is in the washer and yes people he will not sleep with out this blanket and I cant find the same blanket any where! Then he starts limping today and cant walk an want stop crying and his legs are red every where and now hes vomiting and is screaming in pain cause his bum and legs are red and so hot I have never seen anything like it and if he toots he screams bloody murder. He gets to the point where I cant even comfort him and he will not poop sitting down  and now we are back to square one with no help but him having a panic attack but wish me luck he is screaming again so looks like my five minutes are up ha ha, but I am grateful to blog to reflect on my day and be grateful for the little things is what matters most!

Kekoa Noa

So I decided it would be a great thing to start a blog not only to let people know in detail Kekoa's struggles and his medical history but I feel as though it will be good for me as well to get things out! So we all know Kekoa's long life struggle with medical issues and he was just recently diagnosed with Sever autism and encephalopathy. To be quite honest it was some what of a relief to me that he finally got diagnosed by a professional at times I thought am I just crazy cause I can see all these  signs for autism but then everyone would say to me no why would you think that and he's probably just delayed which was so frustrating for me to hear. Yes of course I did not want my kid to be autistic but there were so many signs like he would never  react to his name being called, or him having trouble making eye contact, or the horrible melt downs which all I would ever hear is oh carlie thats a normal two year old thing and as a mom you know when something is wrong with your child, I mean he never understood anything I would say to him and wow its just been such a hard process and how do you describe this to others when most people think oh shes just over reacting. Through this whole processes I am learning so much about spiritual intuition and how our Heavenly father gives every mother and father intuition about their children. When Koa was born I had this gut feeling that something was wrong and know I wasn't sure what it was, I remember looking at koa and him never looking back and feeling like maybe he isn't all there but then I thought your crazy and just overly worried because he would not eat and when he would he would throw up so much my clothes would be drenched, he would never sleep no matter what I did, he had to be held facing out and never really wanted to cuddle unless he was really sick which was often, he never went poop and I remember just feeling so helpless and still do know! After being home in the hospital for two weeks I remember just sobbing and asking heavenly father for help cause I felt so crazy they were only finding little things wrong with koa nothing major and I wanted a quick easy fix! I got down on my knees and poured my heart out asking the lord what to do, was I crazy and was I looking for answers that were not there!! I got this strong feeling that said Carlie you have to be strong for him and never stop fighting, this will be a long hard hard journey and answers will come slowly but surely do not give up and trust in me! So I did just that and going to the doctors office four times a week was not easy especially having a beautiful little two year old girl whom I always felt like I was abandoning  by having to pon her off on others while I say for hours in a doctors office. Its amazing to see where I was then and where I am now! I have to constantly remind my self there is hope and I have to live for the now and enjoy today!  Let me just say I never knew anything about autism and still am learning and what a hard thing it is to explain to family and friends, No matter how hard I try sometimes I just feel like they don't get it or they feel as though I am making an excuse for my sons behavior, and though there are days I just want to curl up in a ball and cry cause I cant make people understand, I realize that they are human too and no one is perfect and I have to choose to not be offended!  I was not prepared for all of the stuff Dr. Lawson ( neuro psychologist)  had to say but I do know that she was inspired to say the things she said! Before I went to her office that day I prayed so hard for my heart and mind to be open to the things she had to say and that she would be inspired to guide me as to what we can do for KeKoa! I had never even heard the word encephalopathy which means brain dis function or brain damage. She told me she believed that Koa was mentally slower than most autistic children she had seen and explained to me they way he responded when being asked things which people have said to me oh but a normal two year old would not have know that which assuming they were just trying to make me feel better but I knew exactly what she was talking about, like the other day I was so frustrated with him not listening  and I screamed at the top of my lungs at him and my two other children started to cry and koa smiled and had no no idea what was even going on! May have not been the greatest example but it made sense to me, I know he is not all there I have seen it so many times as much as I hate to admit that! She told me the metabolic's in his body are off and could be causing some brain build up which they have to run tests on that and hopefully can help his body regulate through diet and medicine.She then began telling me that they were not sure the condition of his brain and that there was a very good chance that Koa's brain would not develop past a certain stage, which was very emotional for me but I knew what she was saying was that feeling the spirit told me when he was first born, now we never know the outcome Koa may surprise us but I am willing to accept whatever is in store for him and it will not make us love him any less. She also suggested he be tested for leukemia and wow did that blow my mind!! I kept thinking why would she ever suggest that she is a neuro Psychologist. So I went home and read everything I could on Leukemia and well most of the symptoms Koa has, I cried and then thought your just scaring your self stop it! And then the next day I got this gut feeling Carlie fight for him and fight for them to test him for Leukemia, I dont know  I feel strongly about it and I pray he dose not have it but I know I am his advocate and I have to fight for him. Most days are hard cause I feel like I work at a doctors office between the eight doctors he sees, I am always on the phone scheduling appointments, voicing my concerns, arguing with the nurses, or asking for paper work to be sent some where and then I feel like a terrible mom cause Im neglecting my other kids ontop of the pressure we as mom's already put on our selves, like I need to exercise, I need to cook dinner and make treats and clean my house on top of having fun things for my kids to do. I feel guilty all the time especially with my daughter jayla I feel like I can never give her enough time or attention, and I get aggravated with her cause Im on the phone and cant pay attention to her when she needs me to and all she wants to do is watch tv cause thats the only way I can get koa to stop his melt down which lasts forever and how do I explain that to her she is three! Its not fair! Somedays I wish things were normal where I could have that one on one time with her and that I didnt have to worry about koa falling or breaking things or having melt downs jayla dosesnt understand his melt downs! But I know she knows I love her and I want to be the mommy she deserves and I pray that I will learn how to handle things better and that I will be that mom that all my kids love and need! Im grateful for the lord for his loving hand in my life, for the unconditional strength he gives me each and every day to never give up! Somedays are easier than others but I know I can do hard things with the help of my husband and my family and my savior! Im grateful for the things my children teach me everyday and that they never give up on me and that they forgive me so easily! Im grateful for Koa's trials I know he gladly accepted his mission in heaven and he chose our family, its amazing how hard trials are but how they can be blessings as well, he is an example to me of faith and never ending hope!