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!