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!
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