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!